raising toby

The Chair

2011-07-25T18:34:00.000-07:00

Today was a big day!!

Toby got his first wheel chair a little before his second birthday.

Toby stopped using that chair at his third birthday.

Not because he needed a new one, but because he didnt need one at all.

It's been sitting in our garage collecting dust. (dont worry we will be donating it to a worthy cause)

But after over 2 years over no wheelchair. And after much discussion. We decided it was time for a chair again. Not because he's not still amazing us. Not because he doesnt prove doctors wrong all the time. Not because he isnt walking amazing well.

It was just time.

There comes a time when a 5 year old is just too big to be held. Too big to be put in a stroller. There comes a time when a 5 year old little boy wants desperately to keep up with all of his friends.
This is toby waiting for his chair.

This is toby trying desperately to get a glimpse of his chair when the door opened.

we've waited at least a couple months.

Toby slightly irritated because he was so excited then he wasnt allowed to wheel because adjustments needed to be handled first.

And then he got his chance. I couldnt get a picture of him not talking.

But then, if I ever doubted (which I did) If my stomach hurt on the way to the appointment wondering if we had made the right decision (which it did)

I think this picture tells it all....and doesnt make me doubt any more.

Pure and total satisfaction!!!

afterward we took a trip to walmart to grocery shop. I wanted him to have a chance to use it during an activity that would be appropriate. He was able to help in the store for the first time in years. He never tired and he loved every moment of it.

I have no doubt we made the right decision.

Kari

ps He will STILL be walking. We will STILL be pushing. The chair will be used only for certain circumstances with lots of rules surronding it. : )

mother's day for me

2011-05-08T18:49:00.000-07:00

wow it's been a while!!! since January!!! awww im a bad blogger!!
well, mother's day a good day to start back.

I'm sitting here at the end of the day, a long day. All the kids are in bed, hopefully sleeping and I just read a great post over at the SBkids blog and it just got me thinking.

You know something makes me proud, prouder than usual on mother's day. It's being a mom of a child with special needs. I'll be honest there have been times I want to hide those needs from the world. (not my best moments) but then there all times when I want to shout it. Mother's day makes me want to shout it.
I go through most days just living life, just doing what we do. Dealing with therapists galore, doctor's appointments, new medical junk, finding place for new medical junk, braces, splints, scolosis. and I just deal and keep going. There are few friends that have the ummmmm bad chance of answering their phone when I'm having a bad day. You know, those bad days when you feel sorry for yourself and all that you do. When you sit down adn realize that your normal is not actually normal. When you wish it was. When you get sick of a new diagnosis, new problem, question about why, stares from strangers. Those bad days. The ones that gut punch you and then you feel really really stinking and jerky for feeling them. Then you have to call that friend back and apologize for complaining. bummer. Then you go through your most days again, just doing what you do.
Well, lets see if I can explain this. Mother's day to me is like one of those bad days but with an awesome twist. I know weird, right? Well, kind of like I'm aware that my normal isnt normal. I'm aware of the craziness, the diagnosis, the questions, the stares, but instead of feeling down and complaining. I kind of wear it like a badge. I'm a mommy. I'm a mommy to 3 almost 4 amazing children. But more than that I am a mommy to a child who needs me soo much more. I'm a mommy to a child who might be tough at times, but in the end is so worth it. I'm a mommy to a child that helps me see strength. I'm a mommy to a child that lets me witness miracles. I'm a mommy a child who one day (like the post on the SBkids blog) might just realize parts of what I've done as his mommy. So instead of being frustrating, scary and something that on those bad days I want to hide from. It's a day I want to shout it from the roof tops. Look at me!! I'm his mommy!! I get to be his mommy!!! Toby proves to me everyday how worth it all of it is. And I am reminded of that on mother's day. So completely and totally worth it. So yea I'm a mommy to a special needs kid. and you know what. I think that's pretty awesome!

2011-01-18T19:19:00.001-08:00

There are heros out there. Real ones.

I'm not just talking firefighters, police officers and people in spandex. : )

I'm talking the average person being a hero. (which then of course makes them no longer average.)

I have a hero right now. She wouldnt know it if I didnt tell her. She might even wonder why. She might laugh and walk away quickly to avoid any blubbering long thank yous from me.

But she's competely and totally my hero. (which then of course would make her a heroine)

The fact that she doesnt walk around letting everyone know how amazing she is just makes her that much more amazing.

Now to the story:

My husband is the director of the Upwards Basketball Program at our church. I have a love/hate relationship with Upwards. Its a great program but it takes a lot of time.

This year Gracie wanted to play basketball. We decided to let her but a part of me worried to sick about it. Toby's favorite game is basketball. FAVORITE. Toby cant play upwards.
1. he's too young this year
2. his arm crutches

So I'm picturing Toby crying every week at practice, every game and at every mention of upwards because he cant be a part of it.
Bummer
Major Bummer

The first practice Toby was just kind of hanging out when Gracie's coach came over to Toby and said,
Hey I need my assistant Coach!!
(trying not to cry just typing this story)
Toby's face lit up like he was at disney world. He walked over, almost strutted, and tried not to smile, but I saw it. I saw him bite the inside of his mouth to keep a serious face, but I saw his smile. I wish I could describe his face better. It was perfect.
I turned around quickly to of course hide the tears.
But then it gets better.
It wasnt okay sweet little boy you can be my assitant coach. *wink* *wink*
She put his booty to work.
She had him out there in the middle of the team. Telling them where to stand. Having them run to him.
That was when it hit me.
She wasnt just a nice lady.
She had hit hero status.
The next week she has him blowing the wistle. (a possible mistake on her part)
During games she has him standing right with her.
Hero
She bought him a shirt the color of the team.
Hero
She gives him stars for his shirt just like the other players.
Hero

So, Cheers to Lori!! She will forever be a hero in my book. She will never understand the true impact her life has made on ours.It might seem simple to you, but for us. HEROIC!

Wow....

2010-12-28T17:43:00.001-08:00

Sometimes my husband wows me. I mean really wows me. Like when I made a comment that I would love to have the back patio screened in and next thing I know he's built it from scratch with no real plans. And now I have a beautiful back patio screened in.

Amazing!

But those moments, as shocking and WOW as they are dont come close to the times when he teaches me things.

And as much as I hate to admit it and yes I do, He really does teach me some incredible things.

It was his book that changed my view of spina bifida more than anything thing else. You would think i wouldnt be surprised by something else he taught me. But I was.

Sitting in Sunday School class with teens again.

Not expecting anything to really truly HIT ME! And then he starts. It was the Sunday before Christmas so of course it was appropriate to talk about Mary the mother of Jesus. And of course I have spent my whole life hearing about Mary the mother of Jesus. But what he said and the view he came from rocked my happy little picture of a oddly glowing mary bent over a baby Jesus.
He talked about the PRICE mary paid to be the mother of Jesus. The fact that being pregnant before marriage made her a social outcast. The fact that her son, her baby was born to DIE. And she knew that. She knew that He was the Son of God. To give birth to a baby who was born to take away the sin's of the whole world. (I'm doing a horrible job of relaying his message) But the part that hit me was when Nate talked about Mary watching her son suffer. Mary watched Jesus die on the cross. She watched her firstborn son be mocked, be beat, be nailed to the cross. She watched as Jesus asked John to take care of her while He hung on the cross. Now think of watching YOUR CHILD go through what Jesus went through. Think about watching your child suffer the way that Jesus suffered, the way that He was mocked.
Now rewind...
When the angel stood in front of Mary and told her she would be the mother of Jesus. The mother of the son of God. Do you think Mary really would have signed on to that had she understood the suffering she would feel. The unbearable hurt and heartache that would be hers. What if she had known? What if she had understood? Had I been hurt I would have gone running the other direction.!! But Oh the amazing parts she would have missed out on. The joy and miracles she was able to witness. The incredible miracle of being Jesus' mother. She would have missed it.
Honestly, I had never thought about Mary that way. I never thought about Mary has a mother who paid a high price to be the mother of Jesus.
Then Nate talked about Toby. How maybe if we had understood what heartache we would feel to see our child suffer......If we had understood the fears, the pain and the sorrow...We probably would have run the other direction. But Oh again the amazing parts we would have missed out on. The joys we see. The miracles we witness as he walks through the house. The incredible miracle of being Toby's parents. We would have missed it.
So yes, Mary paid a high price being the mother of Jesus. It wasn't all glowing happiness in a manger. There was heartache, there was sorrow, but there was also amazing wonderful incredible experience.
I sat there with tears..trying not to break into the ugly cry. I heard a friend nearby crying also.
What a reminder for me.
What a wonderful amazing reminder. Yes, there is heartache, yes there is sorrow...But Oh....the Amazing parts. I wouldnt trade them for anything!

GIVEAWAY TIME!!!!

2010-11-21T19:55:00.001-08:00

Beautiful isnt it???

Don't you want one!!

So make sure you pop on over to http://www.spinabifidakids.blogspot.com/ and scroll down till you find the giveaway post . (only one or two down)

anyone can enter!! its not just for mommies of sb kids. its for ANYONE who likes pretty things.

amazement

2010-11-02T19:49:00.000-07:00

So. Life never ceases to amaze me.

Never.

I am almost having a hard time searching for words to even begin this post. I'm actually going to write half of it over at The Journey website and half here. The personal half here and the other there.

So now I have to figure out what to write here and what to write there.

HA!

Okay, well yesturday afternoon I was surfing the web during "nap time" (i use that term very lightly now) And I came across a sort of graph of children's Spina Bifida Levels and what there physical outcome usually is. It went something similiar to this...Not exactly this as I'm going from memory and this is just an example.
L1- walk with arm crutches. full time wheelchair user later on in life
So I scroll through to find Toby's level and BOOOM!! Full time wheelchair user later in life.
This is what happened in my little heart and mind.
My happy picture I have had in my mind of Toby. My picture of him walking around with arm crutches as a teenager through the mall, opening doors for people, laughing and hanging out came crumbling down around me and getting smashed by a picture of Toby as a teenager in a wheelchair. More thoughts and past advice crowded in of Doctor's and therapist saying he would walk for a while and then use a chair. We heard that when we were pregnant, We heard that with our first therapist, We've heard that in our clinic. But it was like the past few months of how amazing he is doing as made me forget those things.
The past few months I've pictured Toby walking. that's it. Just walking. Ive picture steps in my house. Ive picture normal doorways. I've pictured Toby walking.
That afternoon I cried. I cried again that night as I tried to explain it to Nate. And I cried again today trying to explain to my friend Larie.
No way can my mind wrap around Toby back tracking. No way can my mind take my Toby who has worked so hard and seemingly go backwards.
So today I'm sitting in my car after dropping Toby off at the door for therapy talking to Larie on the phone and trying to make sure my mascara doesnt run all over the place and poor Selina (toby's pt) think I have lost my mind.
I watch her work and work and work with him and about 40 minutes into the session I can hardly take it any more. ( I know it sounds overdramatic but imagine how amazingly overwhelmed im feeling) I start to ask her about levels. I start to ask her about how he's functioning. And then I ask her.....What are we looking at long term? She kind of looks confused at me. So then with a ridiculously shaky voice I explain what I read and what I've heard. She looks at me right in the eyes and says this..

"Kari, Toby should walk till he's 60. No really. Maybe till he's 80. He might need a cane. He might need some ankle braces. But Toby's going to walk. Unless he decides and you decide that he shouldnt. Toby will walk."

And there goes my picture of him in his chair. Of my widened doorways, of my house with no steps. And here comes Toby. Walking up to the door step maybe with a hobble. maybe with some arm crutches. But there's my teenage boy picture STANDING there.

So does life amaze me. Yes life amazes me. Does life feel like a rollercoaster?? You better believe it.

But the best part of all this is. I can see God working. I see God moving and I see God directing. If we had never lost Todd (our old therapist that was amazing) we would have never gotten Selina. If we would have never gotten Selina we wouldnt be where we were today. If I had never seen that chart I would have never asked her about it. If I had never asked her about it I wouldnt know the amazing hope that I know tonight.
Pretty awesome rollercoaster, huh?
Make sure you check out my other post over at the Journey to finish up this story. : )

i always set out tobys stuff to get him ready in the moring. I was shocked when I walked in and realized there was no back brace, no twister cables and just these tiny little afos. pretty amazing, i had to take a picture.

Today I prayed, and I will pray again tomorrow

2010-10-20T12:34:00.000-07:00

Today I prayed.

And today it shocked me how little I pray for the babies who have Spina Bifida. The mommy's who believe they have the right to decide if their child lives or not.

Sometimes its easy to stay in my happy little bubble, assuming that no one would ever think that these children should not have a chance at life. An amazing life might I add.

Today helped me realize how much I should be praying, not just once a year or once when someone really shakes me out of my little bubble. But continually and constantly. Knowing that God listens.

There are so many reminders in my life of how amazing these children are. How completely 100% worth it they are!

Ive gotten over 70 orders for necklaces and bracelets from my other blog and I've loved it. Its so amazing to sit there and look at all these little circles with children's name on them. Children's whose parents chose life. Its been amazing to look at all the words. Brave, perspective, fearless, and can. Realize how much meaning those words have!

100% worth it!

This week if your friends with me on facebook You know that ive been working on a painting for the Kinetic Kids (sports programed for handicapped children) silent auction. A picture that really does mean so much to me because if though some might look at Tobys arm crutches as a sign of being DISabled. I see them as a sign of being ABLE! I sign of how far weve come and how hard weve worked.

100% worth it!!

And so I will keep praying even after today is done. I will keep praying that these mommies, daddies, doctors, grandmas, brothers and sisters will realize how 100% worth it these children are!!

A little idea to a really big deal

2010-10-08T14:12:00.001-07:00

So as we all know from facebook, blogs, babycenter. The Spina Bifida Awareness Shirts are a hit. A much bigger hit than I ever even imagined. As of right now we are already over 200 shirts!! I stay awake at night now imagining angry customers who got the wrong sizes, boxes surronding me and none of the shirts fitting in them!! Its great! I had no idea how out of hand this was going to get. Not to mention people seeing the necklaces and bracelets and ordering them. Its fantastic, but slightly overwhelming!

I love what Karen over at Carson's Corner said about spina bifida awareness

I also wanted to mention that October is spina bifida awareness month. Spina Bifida is something that we have learned about through experience. However, I feel that people need to know what it is through influence as well. I think about all the precious babies who are not given the chance to life because there is a lack of proper information or a lack of proper counsel. How sad it is that spina bifida is considered a severe disabling birth defect that effects the child's quality of life. Even worse is that many women are counseled by doctors that the very best thing they can do is choose abortion. We must do our part to spread awareness, and change the opinion of what spina bifida is. Look how cute and happy and amazing a child with spina bifida can be. Look at the quality of life they themselves have and the blessing that they are to those around them. They are so strong, and teach us so many things about life and love.A small way that you can help is by purchasing a Spina Bifida awareness t-shirt. The cost is only $13 and you can "wear your awareness". Perhaps you will meet someone and be able to share the testimony and blessing of the one who you love with spina bifida.Please go to http://urbanupcycling.blogspot.com/2010/10/redefine-spina-bifidia.html and place your order today. They will only be available till October 12.

What a great reason!! I love it!

Anyway, I've never been so excited about a shirt in all my life. But I really am. Leigh Gibbs husband, Andy did such a fanstic job of capturing how we all feel about Spina Bifida. It's such an amazingly honest design.

So anyway, this has been my life since this past wednesday and will probably continue to be until this next wednesday.

a moment of triumph

2010-09-27T12:22:00.000-07:00

Im having a rough day. One of those nothing goes quite according to plan cause ive been at appointments with Toby. Trying to homeschool, now juggle 6 therapy sessions a week and any other extra appointments are taking a toll on my emotional and mental stability.!!
So instead of sharing all my woes with you and sitting and feeling very very sorry for myself. I'm going to share a happy moment.
I hope that people from my church family will especially enjoy this.

Since our Pastor has been doing the "kids choir" every Sunday morning Ive enjoyed and not enjoyed it. Of course I love seeing all the kids up there and I love watching Gracie so proudly march up there to sing and all of my friends kids. But there was always someone missing. And that someone sat right next to me, (well sometimes, sometimes he prefered the smyer family) : ) Toby would never go up. The first time he tried he started making it that way and I honestly saw the shock of stairs and kids running hit him. It made my heart hurt so bad for him. He just broke down crying right there and turned his little walker around and sat down with me. That was it for him. He wasnt going to try it again. Every Sunday Pastor would announce the kids to come up, I would lean over and ask, "Toby do you want to sing?" He would say, "NO" and I wouldnt push it. I just left it alone even though I wanted to be the pushy, you will get over this fear right now, type of mommy. So every Sunday even though I loved it, I hated it because it always made it so obvious how hard things were for him. Things that werer so simple for the other kids and how he saw the difference.
Well about 3 or 4 weeks ago. I leaned over and asked. and He said, "Okay. I'll try it." I about died right there in my seat. I about had a panic attack. Luckily Jessica (toby's best teenager as he calls her) has always said that when he's ready she would take him. She was sitting 2 rows ahead. I got her attention and off she went with him. I love that she knew just what to do. She didnt hold him the whole time. She held him till he got comfortable and then put him down and held his hands so he could stand right with all the other kids. It was a moment of triumph. Such a small thing but it was amazing.Only a few people knew how much that moment meant. And every week since he's gone up without question. The last 2 weeks he's gone with his walker with different people helping every week.

There are so many aspects of this story I love. And even though its kind of a bummer day. I cant really help but have a sense of happiness when I think about it.
hopefully I'll post a picture soon

survived the week

2010-09-07T20:44:00.000-07:00

We survived our week!!!

We ended up having appointments Monday thru Friday for Toby. Poor guy, but nothing that a trip to mcdonalds couldnt cure.

We will have more coming soon.

Thats life though.

Some results. We got molded for a back brace for Toby's new diagnosis of scoliosis. (bummer) He is going to start receiving speech therapy (they put him at the level of speech for half his age..crazy bummer) And Ocupational therapy.. (wasnt near as bad as speech but is still needed) which puts us at a grand total of 6 therapiest a week. Honestly im hoping it takes insurance a while to approve this one. : )

On a positive note I had the nicest therapist stop me today during PT and take the time to tell me about all these programs. (most I had heard of) But not only tell me, print out paper work, write down phone numbers, print off webpages. EVERYTHING!! I was so thankful.

Toby and I were out in the most horrible rain ever for therapy today. We have to walk over a block to our car from therapy. It didnt hit me till we got outside that I would be carrying a 4 year old, papers from therapist, arm crutches and trying to balance an umbrella. Well of course our umbrella blew inside out 4 times. a car drove by and splashed me. the umbrella got blown out of my hand back into the street we had just crossed (which then we had to recross to save the umbrella) in all the hussle I put Toby into Milo's baby car seat (which he immediately got upset about, had to get back out in the rain and switch him) 2 cars pulled over and asked if I needed help. But the best part was. Toby and I just laughed. We were drenched from top to bottom, but it was so funny. Because if it COULD go wrong it DID go wrong!! I'm making sure it goes in my memory bank. Hoping it goes in his too.

On a totally different note. I wanted to give a shout out over to the SBkids blog. We are trying to do a giveaway and help raise awareness for SB and raise support for a program a mommy is trying to start. so click here to find out more and enter.

Hope you all have a wonderful day!! Goodnight!

Kari

I can feel it....

2010-08-30T19:49:00.000-07:00

There are days. More days than not. That I cant feel it. There are weeks when there are only brief moments of it.
This is not one of those weeks.
I'm talking the feeling of having a child WITH special NEEDS.
Do we do things every single day that most parents dont do? absolutely. But its just our life.
Do we deal with issues that most dont think aout? Probably. But it really becomes normal.
So sometimes when I have a week like this one it kind of punches me right in the gut.
We've been trying to get certain medical equipment for Toby for 2 weeks now. With zero results. well finally some today. Which meant numerous phone calls and lots of stress.
We have an appointment every day this week but Friday.
We found out today that Toby's speech level is at the age of a two year old. We found out Toby needs speech therapy 2 xs a week. That puts us at 4xs a week now. We also are signed up for an ocupational therapy evaluation which if needed will put us at 6 times a week every week for therapy!! My heart started pounding at the thought of it.
Toby just got glasses last week after a 3 hour appointment. And now are dealing with the glasses battle.
We are dealing with questions and concerns for his braces and belt (appointment on wednesday)
Pushing tons of Goals for therapy (appointments Tuesday and Thursday)
And waiting for the phone call to schedule the ocupational evaluation.
So needless to say. I am feeling it!! I think our whole family is. This on top of homeschooling for the first time in my whole entire life. It's been crazy. My stomach has hurt worst than it probably ever has.
I know that God's grace is all I need to get through this week. I know that I will get through it. That next week I will either look back and say, "How in the world did I survive?" Or Ill say "Not too bad."
But it's the way it goes with a child like Toby. We have most days where its just life. Day in and Day out things we deal with but its our normal.
I'm so thankful that this is not our normal!! But I sure am feeling the stress this week.
Please keep us ALL in your prayers. I fuss about me, but Toby is the one really dealing with all of it full force.
Just wanted to add a funny picture that says it all for me this week. I tried to switch things up and do our math lesson outside...

Toby with those arm crutches

2010-08-21T13:29:00.000-07:00

Wednesday night we had our first teen meeting of the school year at church. We started off with praying for each other. THe girls and the guys split off. I ask all the girls to pray for Toby as he keep working on his arm crutches. (he hates them) So we sat there I heard all those girls pray specifcally for Toby. AMAZING!! The next day I sure had some fire under my tail to get him working even harder. And thats's the day it happened. I left his walker in the car (which I used to do when he first go it because I hated using it so much) we finally had a break though. We even took them to a store today and outside!! He's doing really well... And dont even try to tell me it wasnt because of having that prayer time!!

ps I told Toby about all the ten girls praying for his arm crutches. All day he said, "really?" "For real?" and then he woudl say " tell me the story again how they prayed for me."

Social Security...Oh How We Love You!

2010-07-24T19:11:00.000-07:00

So, I know it's either tons of posts or nothing at all for a while.
Well, this one is totally worth posting.
It couldn't have waiting for a better time.

We got our letter from SSI today.

And...

Drum Roll....

Based on the facts they have received We will not being paying them back the 5,000.00 due to the fact that it was their fault!!

Love it!!

Love it!!

Love it!!

We had planned on getting a lawyer and fighting even more if we been rejected yet again, But hooray!!! We don't have to go down that road!

I know many of you have been praying and asking about it. So that's it. Such a long drawn out process to end with such a simple letter, but we are so thankful for our little letter.

Nate even joked we should laminate it and frame it!! :)

Holding Hands

2010-07-23T19:59:00.000-07:00

This past week was our first double duty therapy. Tuesdays and Thursday Physical Therapy session for Toby. Between that and getting ready for VBS my poor house has suffered. For that reason this will be a short but sweet post.

If you read my last post over at SpinabifidaKids you would have read that Toby stood on his own for the first time.

Selina (our new PT for Toby) has really sparked some strong desires for us and really set the standard quite high. But oh it's so worth it.

Toby has walked with his arm crutches on his own!! Now this isnt the I'm standing at the kitchen and he takes steps across the living room all by himself. This is a painstaking process of me making promise after promise to not let him fall just to get that first step with my hands just inches from his arms.

It goes something like this.

Mommy: Toby do you trust mommy?

Toby: Yes..but but but...*tears*

Mommy: Toby I promise I'm not gonna let you fall. I promise.

Toby: *sobbing*

Mommy: What's scary Toby? Tell me why your scared?

Toby: I'm gonna fall

Mommy: I promise Toby. I promise promise promise. I will catch you. I promise to catch you

Then finally we get that first step. Of course then we get like 5 or 6 more right after that. And of course he's all smiles and super proud of himself. (which makes the tears and frustration totally worth it)

Tonight was an awesome night for me. Tonight I had Toby use one arm crutch and I held his hand while we walked to the couch in the living room. I have never been able to hold Toby's hand while he took a step. Its one of those things Ive cried over and I've just missed. He used to try to hold my hand in his wheelchair all the time and it just never worked. But tonight we got to hold hands!

It was big!

I didnt get a picture of it because of course I was busy, but I thought I would at least post a picture of our bedtime reading. Toby picked out 'Fancy Nancy' Oh that boy. No matter how much he loves Star Wars, Army men and all kinds of stuff. He'll still pick out something like Fancy Nancy!!

Belief

2010-07-14T14:29:00.000-07:00

I wrote a post today for the spinabfidakids blog, but I really thought it belonged over here too, being that it was mainly about Toby. and since this blog is called raisingtoby! : )

Click Here to read my post over at the SpinaBifidaKids blog.

It's been a while

2010-07-10T13:57:00.000-07:00

just felt like i needed to add a picture.

Well let me give you the general news...its been a while.

Lovely medicaid has decided to take forever to approve ANYTHING. But low and behold everything has finally been put through the system.

Toby now has AFOs!!!! The short braces we have been praying for! With these braces came twister cables that attach all the way up to a belt on his waist. This has not come without some problems. We ended up with some serious sores and such for a little while, but got the belt readjusted and now we are good to go. God has really protected us from potentially serious issues.

We have yet to start therapy with Selina. However, we did get to go meet her and do an evaluation. Therapy will start this following week. You wont believe what she said at our evaluation. Okay, yes you will, because we have a pretty incredible God. She said that she believes Toby is..and I quote, "An excellent canidate for independant walking." Did you catch that? Let me rephrase. She believes that there is a good posibility that Toby could one day walk without the use his walker and without the use of crutches. She seems to be my type of therapist. She is going to push Toby to his fullest potential. We will be starting therapy 2xs a week instead of just once to try and give him a little bit of a boost in the direction she wants him. We are so thankful to get started on this road regardless of where it takes us.

God has been so good to us and has taken care of so many of our needs and even our wants.

We have yet to hear back from SSI on the 5,000 they are pretty sure we owe them and will begin the process of dealing with royalty checks for Nate's books.

Toby seems to be in a new stage of life right now. He's hit the age where kids directly ask him what is wrong with his legs. It is frustrating and heartbreaking, but we are getting through it and figuring out what the best way to handle this is. One mom actually sent her daughter over to our table at a restraunt to ask us What happened to him? (and yes in those words) I looked at her and said, nothing and turned arond. I really wanted to say, nothing sweety. what happened to your mom that she would think it is appropriate for you to come over and ask us that? Luckily I didnt say that because I'm pretty sure I recognized her from our summer VBS program after the fact. What a great testimony that would have been. At camp this past week someone asked Toby what was wrong with his legs. Toby just shrugged his shoulders and got really quiet. Just typing that makes my heart hurt all over again. I know that most children mean well, and either have never been exposed to a child with special needs so upclose and personal, however it is still hurtful and trying.
Toby is adorable with his walker and we do attract attention wherever we go. Sometimes it is welcome attention like when Elmo comes up and gives him a hug at a show, but sometimes it is unwelcome thats for sure. So we take it as it comes and pray for Gods grace and wisdom. I wonder where I will be with all of this in 6 months. If we will have a specific plan when asked questions, if Toby will begin to ask more specific questions. Or if this is just the way it will be for a while. Looking back on previous posts it seems like nothing ever really stays quite the same.

Well its been a while and I had a lot to catch up on. Have a great weekend

Hello Selina

2010-06-04T21:03:00.000-07:00

So my last post...

kind of a bummer...

But isnt it funny the way God works. We were recommended to two therapists for PT for Toby. One was recommended by two seperate individuals. We were also told that we would wait, plan on waiting, waiting a long time. Maybe not even plan on getting in ever.

But isnt it funny that God knows things that we didnt even know or understand at the time.

I called the first one. The one highly recommended. The one recommended by two different people. The receptionist let me know there was a 30 person waiting list for this therapist and I might as well look else where. Well, I asked to be number 31 and then asked for Selina (thats her name) to call me.

After many many more calls. And wanting to bang my head up against a wall from all these touchy feeling, love yourself and dont ever push the child therapists I got a phone call.

It was Selina.
Funny I thought.. Courtesy call. That's nice. Then she shocked me.

"I have permission from my boss to move you to the top of the list"

Fantastic I thought..now maybe only 1 or two months.

NOPE!! Try next Thursday. Isnt that crazy???!!!

So, here I go again worry worry worry about things that God had totally planned out and totally in control.

I wish I could just learn that little lesson...but chances are I'll be back on here...worry worry worry.

On a totally different note...

Toby had a VCUG and ultrasound done this past Thursday. They didnt find good things. His Kidney refulx is back and with the number 3 (not good) Now they are talking surgery, tethered cord and all kinds of stuff id rather not think about. They moved up our july appointment to next week. They want to do a full exam see nuero and everyone. This stuff is just plain scary. I HATE kidney stuff.

But,...okay...not going to worry worry worry

LOok how quick I forgot my lesson!! : )

Seriously though please be in prayer for us this next week. We have a hearing with SSI over a few thousand dollars they are pretty sure we owe them and these doctor's appointments.

Sorry to be lengthy. I could have written about 4 more paragraphs!!

Losing Todd

2010-05-17T12:24:00.000-07:00

It was a sad day at therapy for us today.

We walked in to start our regular Physical Therapy when our PT dropped the bomb on us.

He's changing offices.

Me: Oh? Well, we can follow you, right?

Todd: You CAN, but the new office doesn't take medicaid.

Me: Oh...then we cant.

silence........

tears start welling up.... more tears start welling up.....and some more....

feeling like a total ninny. but cant seem to get the tears pooling up under control.

Todd went on to explain that its not one of those happy moves. Its because there are problems going on at the office he is at right now. It almost made it worse to know that this move isnt just something that is better for him personally...It's because of well....most likely...stupid people.

I somehow made it through the rest of therapy without boo hooing like a child.

Luckily all of this went over Toby's head because he was too excited to see Todd and play.

The water works did start big time after getting on the phone with Nate. There's something about hearing my husbands voice that makes my tough mommy just melt away into a puddle full of tears and emotions. (unfortuantly for Nate)

As I wrote before, so much has been accomplished this past year. We started with Toby shortly after his 3rd birthday and we will be finishing our last session shortly after his 4th birthday. Todd has been the core of all of the changes we have experienced. He has been the push, the drive and the knowhow this past year.

I am thankful for the time that we have been able to pick his brain, but am just plain sad for the time we will miss out with him.

I know that when we sit down with Toby to let him know it will be a sad day in our house.

Please pray for us as we look for someone to replace Todd....even though he isnt actually replaceable.

Three to Four in Six days

2010-05-13T07:03:00.000-07:00

It has taken me some time to decide to blog this or not. There are just certain parts of our lives that dont belong on blogs dont really need to be opened up for everyone to see, read or feel. But there are those parts that are still good to share whether or not they be hard.

Toby's birthday is in 6 days. Pretty big deal. It's the big 4!!!

Now I'm sure you are thinking that the last statement doesnt seem to go along with the first paragraph, but for me it does.

There is one problem with this birthday for me. 4 seems so much bigger than 3! This birthday is a big deal for me because I feel like the difference between Toby and other children will become more apparent. Yes, its only 6 days older than he is today, but now when someone asks I 'll have to say, "He's 4." And then you get the surprised look. The surprised look is always a bummer.

So even though his birthday in and of itself is incredible. I can remember being in the hospital with him like it was yesturday (and if you ask Larie that's pretty remarkable for my memory) The thought of his disability seeming .....stronger....that's not the right word, but I think you get it. Is a bummer.

As I write this out, I realize how incredibly flawed my thinking is. Isnt it funny when you see something written down that you realize how you arent focusing on the right thing. The last few days I've been focusing on the things Toby cant do. (I guess this proves I am not super mom) I've been focusing on the learning issues, the struggles, the hard parts. When in fact as it gets closer to his birthday I should be focused on all the things he CAN do.

So everyone, you are being a witness to a change in heart as I write. Funny how God works. Yes, this birthday will still be hard, yes it will still be a bummer to say that he's four and someone react shocked,but that's okay, because now im going to write a few of the things we have accomplished this year.... just a few.

Walking ALL THE TIME!!
Climbing in and out of his car seat
Going down a small step with his walker
Singing in the car
Wanting his braces on
Going Potty
Working on arm crutches
Putting the wheelchair in storage

So, looking at that list makes me realize.,,maybe three to four isnt so bad after all. we've had a pretty eventful year three!! Maybe four will be even better!!

The end results of Galleria Mall incident

2010-05-08T06:29:00.000-07:00

so what's happened since the big Galleria thing in Dallas, you ask? Well, if you are a facebook friend with me you've heard bits and pieces.. (if not ask to be my friend I can never figure out how to look anyone up on that thing)

So here's what went down. After repeated messages from lots of friends from all of the country to the Galleria. One finally got a little more than a form letter back from someone, stating that they hadnt even heard from me. NOT TRUE!! I hadnt written to them and as I said before Nate had called them the very day it happened.

Well, I wrote AGAIN. Explaining who I was. Within a week I had an email in my inbox from a very nice lady by the name of Leslie who is the Vice President for Simon Malls in Texas. She asked that I call her or that I send her my number.

So of course I called. (during nap time so that I could hear everything HA!)

She was an incredibly kind lady who was extemely and I believe sincerely apologietic. She heard me out and heard about why I felt it was a big deal and never once tried ot rush me off the phone. (Huge in todays day and age) She then asked some questions in regards to the conversations Nate had. They still couldnt figure out who he talked to. I called her back later that day with some more details from Nate about whom he talked to.

She wrote me an email later on that day. They are pretty sure they have figured out who made the first phone call and have narrowed it down to 4 men who called Nate back that day and chewed him out.

Here's the exciting part.

Because of this all the security guards for Simon Malls in the state of Texas have now undergone training for situations like this one. To make sure that it is actually handled correctly!!! I think that is the GREATEST accomplishment out of all of this. What a wonderful way to end this situation!!

On another note...we are receiving a 100.00 visa gift card from Simon Malls. : )

So, I hope this is an encouragement to you, especially you SB mommys. We can make changes. We can do this without being vindictive or ugly or even overdramatic. We dont have to become bitter but we can take action in hopes to improve things for other children!!
And sometimes...just sometimes...it actually works! : )

A scary time, but a good time

2010-04-30T13:17:00.001-07:00

We are going through a somewhat scary time right now. It looks as though we will be losing Medicaid and SSI benefits for Toby in the very near future...say in a couple of days to a couple of weeks.

This all started with Colleens post about Medicaid waivers. (I appreciate the post by the way)

However, this started a chain reaction.

Nate and I knew we were close to the income level cut off for SSI and were already over the income level for reguarly medicaid. We knew that when Nate published his first book that it would be putting us even closer. However, with his second book coming out in the next month I knew that it was mostly likely going to put us totally over the income level. (and yes I said SECOND book, how neat is that?)

So after reading Colleen's post decided I should start to do a little research and come up with a plan. Now granted when I started making my phone calls I thought this was for FUTURE reference, not right now!! So I started with my list of contacts and my notebook and went through it all.

TWO HOURS LATER....

It became very apparent that as soon as we get Nate's next royalty check we will be pushed over the edge. This is HUGE for us. We have relied on these programs for all of Toby's medical care. And let me tell you, All you tax payers out there. We appreciate it. and have been extremely thankful for it. A small part of Toby's NICU bill was over 100,000 and that was just the first month of his life. So needless to say this is something that is necessary for us and for Toby.

There are other programs that we can go through and things that we can apply for, but it's just plain scary. I know that its going to work out and I think we have most of it figured out, but it's still scary. All of a sudden working with copays and referrals and things that I've never had to worry about before will be a whole new world to us. The timing of all of this to. Because of Toby's medical care being ongoing, with therapy and all kinds of things we abssolutely can not have a lapse in coverage. So obviously that is important.Also, we are fighting SSI on a supposed overpayment of a few thousand dollars at the time. If we lose SSI they will want that money back out of pocket!!

So, I write this for a couple of reasons, one to tell you Im scared. Im pretty nervous about working out the details and for this to put a new aspect of our lives. So I need prayer.
I also tell you this because I know that God is good and I know that He is soverign and I KNOW that He knows all of this and the end results.

God promises to take care of our needs. Toby needs medical care reguarly. I can rest in the promise that God promises to take care of that need and that God loves Toby more than I could ever dream of loving him. I believe that this is a good way for me to increase my faith.

The neat part of this too is it seems that God is reminding me reguarly that He takes care of us as a family. Little things like a stove, one that I specifically wanted down to the smooth top, completely given to us. A desk that I needed to get things ready for homeschooling delivered straight to our new family room. There is so much more, and they are all just little reminders right now of how God takes care of us. And if He can take care of something like a new stove with a smooth top. I'm pretty sure He can take care of Toby's medical insurance.

Please follow the link

2010-04-15T13:55:00.001-07:00

I'm sorry I keep doing links, but once I write it once I really dont even have the time to copy and paste...Nap time is fixing to end. Please take the time to read this, please forward this to people you know. Id really like people to be aware that things like this still happen so they can be prepared to help someone if they ever see something like this. We should all be prepared to take action when needed.
So click here for the story of what happened to us this monday. but you might want to take a blood pressure pill beforehand

crying

2010-03-31T08:21:00.000-07:00

I wanted to share this post from the other blog i work on that I wrote. I think its important for people to realize that sadness doesnt just end but that it is not continuous either. and that sadness is just sadness and it's okay.

so click here to read.

thanks for all you who take the time to read about us. Also, Toby just got casted for his new braces and we should be getting them this week or next. I'm sure Ill be putting pictures up soon

Bruises

2010-03-20T08:33:00.000-07:00

Can I just say sometimes I am not the perfect mom! I know it just shocks all of you to hear that! : ) But really sometimes I feel so far from it.

Yesterday Toby got to watch his mommy throw a bonafide temper tantrum. I write about this not because I'm proud or think its cute, but because I like to be super honest on all the aspects of my life with Toby.

We are really working on independence with Toby. Trying to get him to walk down hill on our driveway to go up to the van door, open it and then climb in, get in his seat, turn around and get buckled in (he can unbuckle just not quite buckle) Well, imagine trying to do this with a walker with four wheels and being three years old and trying to control yourself going down a slope. Doesnt really work out well. Well, for some reason lately Ive been getting hurt constantly by that walker. And as most of my friends know I have extremely low pain tolerance. To put it mildly. The other day he slammed his walker on the top of my foot and I ended up getting one nasty bruise on my foot. Well this day in particular he wasnt wanting to do ANYTHING himself. So he started being whiney about getting in the vain. Well, in all his complaining and worry he rammed his walker right into my shin. I immediately got super ticked off as I felt the large knot form and the almost instant bruise come into view. I totally lost my temper with him and got frustrated. In my head I was hating my life, hating his walker, and just hating the daily little struggles. I had a down right pitty party, bad attitude temper tantrum. Luckily most of what I was thinking wasnt coming out of my house. Nate, (My husband) who was sitting quietly in the front seat watching all this would have been shocked I'm sure. (or maybe not) Anyway, immediately I realized how wrong I was. It wasnt anyone's fault. Things happen. I should love that walker. I should kiss the people's feet of whoever invented that walker. That walker makes it where Toby CAN walk. A year ago Toby had a walker but never used it. I should be thankful that I have a son who is walking and using his walker at all. So much has changed this past year and if my biggest problem is having some big ugly bruises then hey I think (in hindsight) that's a pretty good trade off if you ask me!!

Quick Update

2010-03-04T13:50:00.000-08:00

Some of you know already...but some of you dont...

A while back I posted about our goal of AFO's. Never liking goals. I felt really funny about not only having a goal, but writing about it.

Well.....

Im sure you see where this is going.

Monday at therapy. Todd, said, "Let's go ahead and call about getting him some AFOs. There's no reason really for these any more."

I wanted to jump up and do a little jig. But I didnt. I nodded my head and "mmm hmmm." Politely.

So, Go Toby Go!! We did it!! Well, not officially yet. Now I have the long and frustrating job of being an obnixious mom by calling doctors, therapist and orthopedists over and over again until someone actually signs a piece a paper and faxes it in.

So, that's that. I am sure I will be posting pictures when we get them.

Kari

ps. for those of you who are confused. Toby has KAFOs right now. they go all the way his leg. AFOs go below his knees.

Oh yeah and ONE MORE THING. Milo took his first steps today!! Hooray!!!

It's Not all about you

2010-02-25T19:33:00.000-08:00

Weird Title, right?

Well, its been 3 weeks since Ive written. Quite possibly the longest I've gone. Well, the reason is my life is not all about Toby. I know it might seem that way, ive got one blog totally dedicated to HIM, another blog dedicated to spina bifida and I make necklaces to help raise spina bifida awareness. But really, its not all about him.

I have two other beautiful amazing just as talented, just as strong, just as brave children.

I want to blog about them for once. In fact I might just have to changed the title of my blog.... : )

Grace, her birthday was on February 18th. She has only had one birthday without Toby in her life. In fact she was 15 months old when Toby was born. She was truly God's grace in my life during my pregnancy with Toby and his month long NICU stay. I didnt have a choice to get up out of bed or stay and get depressed. I had Grace who was still depending on me to be mommy. (the best job in the world may I add) She is a handful. She's five years old now and I see so much of myself in her and so much of her own unique personality. She loves pink. She loves to swing. She loves climbing on things she shouldnt climb on. She loves to sing and absolutely loves church, especially her sunday school teachers. She loves veggies and I mean looves veggies. She gets in trouble for eating too much brocoli. She can be the most patient and loving child I have ever been around and then she can be the most selfish, rotten one too! She sits through therapies for Toby. She wants to go to Doctor's appointments with him. She helps him into the play place at chick fil a. And yells at any kid that might come close to stepping on Toby's fingers. She waits patiently hoping to get a sticker from a doctor or therapist as Toby gets his millionth sticker. She makes me proud. She helps and loves to help. She has an incredibly strong desire to learn. She designs buildings for missionaries with her blocks. I love her.

Then, There's Milo. Oh sweet Milo. His birthday was today, February 25th exactly a week after Gracie's. He's One now. His personality is coming out full force. He is truly the happiest baby in the world. He would smile at a gremlin if the gremlin smiled at him first. He has the best giggle Ive ever heard. You could seriously tape it and sell it. He crawls with his booty straight up in the air, flat footed and it makes everyone laugh. He has a mullet full of curls and I could cry at the though of cutting it, but could also cry at the thought that my kid has a mullet! He loves to squint his eyes at you, especially when you have the camera out. It took him what seemed like fourteen years to learn to clap his hands. He's not walking and we arent in any hurry. He loves mac and cheese. He loves brocolli. He loves stuffed animals. He loves his friend wesley. and all the babies at church. He loves his sister and brother. Every morning I hear him and Toby playing till I come get him out of his crib. He's a bad baby who likes to get into the potty, rip things up, unplug the night light, throw his food on the ground, and all kinds of stuff. He drives me crazy. He loves his blankets. He could be screaming and if you give him his blanket it's like a tranquelizer. : ) he loves it. I love him.

So, yes it's been three weeks without a post. But it's been three good weeks. Weeks of planning birthday celebrations, having birthday celebrations and just enjoying all that God has given me. My life is full.

Weird Title, right?

Wanting you to see both sides of the coin

2010-01-29T20:44:00.001-08:00

So the last couple posts have been pretty incredible. And I am thankful.

But I also want to be honest and want you to have a glimpse of both sides of the coin.

Tonight was a great night. We spent time with great friends and had some wonderful conversations. However, Tonight had its sadness also.

Tonight, Toby realized something or at least he voiced it for the first time. There was a baby at our house that had just turned one. He was walking around like a champ. Super cute. Toby realized the difference.

At first it was just a quick sentence. "The baby is standing." and then throughout the night it progressed. "The baby is walking." And then a little more. "The baby is walking without a walker."

My heart is genuinely heavy tonight. Its hard to say all around sad, because it was a good night. But just heavy.

After Toby thought these things through he said, "I am going to walk without my walker." And then he tried. Needless to say it didnt quite work out in his favor.

I saw him realize the difference tonight. I saw him see his dependence on his walker and the lack of dependence this little baby had.

It was hard to watch and I wanted to take it away and not let him figure this out. However, I also know that this is also the way God works sometimes. Someday in the near future Milo will be walking, (he'll be one next month) and this will be a transition for Toby and for us. Maybe tonight was God's way of easing Toby into the transition and into the thought process. It is hard to think that his baby brother will be doing something that Toby is physically unable to do. It is hard, but it is part of our life.

As I write this I am reminded of our dependence for God. I'm also reminded of the fact that sometimes its very hard to admit our dependence for God. So maybe, God wants to use this as a reminder for me, and for all of us, that yes, it's not fun to always admit we are nothing without God. We can do nothing without the strength and the very breath that He gives us. But that is the way He designed us. We need a Savior and we need to be dependent on His Strength, His Grace, His Sacrafice and His Love.

So, yes I go to bed tonight with a heavy heart. But also with a heart reminded of how much I truly need my Savior.

kari

Things are good

2010-01-21T19:46:00.000-08:00

Okay so the past week or so The Thomas household has experienced some changes. Well, I guess I should say Toby has experienced some changes. There has really been so much to write about that I don't even know where to begin.

First and foremost I believe I have seen miracles happen and when a miracle happens I have to give God the glory and the credit!!

A week ago Toby could not stand at all with his left Brace unlocked. (It's harder for him to stand or walk because it requires more strength to walk with his knees unlocked--more control.)His knees would just drop to the ground, and he just could hardly get back up. He has been walking for about a month with his right one unlocked. (It has always been his strongest.) Well, Todd (our incredibly wonderful amazing therapist that God uses to help Toby) wanted him to walk without the left brace locked also. Honestly, I have to stop and admit I had NO FAITH. I didn't even want to try to go down that road. Toby would cry and ask me to lock his brace. He knew the difference and like me he didn't think he could. So I blew Todd off a couple weeks ago. Well, then last week he let me know how important it was for us to push for it. So here I go, with no faith, but hey we will push for it. I like Todd and didn't want to lose the mother of the year award. : ) We had about two days of misery. Crying, not wanting to walk, not wanting to stand, I felt like we were going backwards, and I kind of wanted to curse Todd's name at this point. I wanted to be content with Toby walking. I mean isn't that enough of a miracle? Well, after 2 days of super rough times...I'm talking some really bad falls. Enough to make me feel like I was for sure having a heart attack or that we might be on the way to the ER...Toby is walking and he is walking ALL DAY without either brace locked. How is it that I thought this would take months, and we might not ever get there to just a few days and here we are???

It really is a miracle!!! So I don't like to set goals with Toby because there are absolutely physical limitations that it doesn't matter how hard we work, we just won't break through. But for some reason I really want to share one. I know that God is the one that will get us there IF and WHEN we are supposed to be there.

Toby is wearing KAFOs right now. You can check out a picture here. I'd really like to see him in AFOs by the time he is four. This would be huge. Right now we can barely put him in a swing because of his braces, barely hold him, have a hard time getting pants on and off, and his legs are just bulky and heavy. AFOs would be HUGE for us because they are soooo much smaller. I want to share this with you because I want you all to have a specific way to pray for us. So please pray for continued strength and for AFOs.

God has done miracles this week, but I also don't want it to go unnoticed that I have an incredibly strong little boy. I have never ever seen a child work so hard in my life. Now he doesn't always have the sweet spirit, (but, really, what kid does?) but he worked and worked and worked.

I have so much more I could write, but I will save it for another day.

Good night.

Toby's Clinic Appointment

2010-01-15T12:06:00.000-08:00

So yesterday was a wonderfully exhausting day. It's one of those days where you see God work, but you still walk away exhausted.

Toby had another clinic appointment. He underwent CT scan, VCUG test, Urodynamics Study, and an Ultrasound. What a day for my little guy!!

He was fine as long as everyone let him know that there were no "IV Pillows." He really hated it the last time we were in the hospital and they taped a board to his arm for his IV.

So, we left the house at 6:15 a.m., and I couldn't believe how much he talked on the way. The last thing I wanted to do was talk, but I had to smile at his spirit even early in the morning.

He has been excited about talking about medical stuff and his doctors and who they are and what they do. He's starting to put everything together more. So first we saw
Dr. Pepas who let us know that his bladder is great!! However, we then found out that his reflux is back!! Honestly, I didn't even know kidney reflux COULD come back. So that was kind of a shock. So now we are on antibiotics all the time. Bummer!! But we have to protect those kidneys.

We then saw Neurosurgery. Toby's ventricles were small, so they adjusted the pressure again. Tullous was planning on this the whole time, so no big deal. It's incredible that they can do this with a magnet!!

Then we saw ortho. Now I will have to admit that this was my shining moment. My moment of pride and even the joy of handing a doctor his shoes to eat!! If you can remember back to my last post, Toby saw Ortho and we were told that he was functioning at the highest level on his spine that I had ever heard any one say, L1!! (By the way, the lower on the spine the better because the lower the function the more muscles and things are functioning. For example, L1 is much worse than L5.) I was super upset and frustrated. He let me know not to plan on walking and that we should just help him learn enough to make it to a bathroom and stuff. Super depressing. Well, only about TWO MONTHS LATER, Toby is not only walking but is walking all the time. WITH ONE BRACE UNLOCKED!!! Super HUGE!! Luckily, Toby was in the mood to show off and walked all over the place for his doctor. Needless to say, the doctor was surprised and then said Toby was functioning at the lowest level I had hear--L4 OR even L5!!! So that was an incredibly great moment for me. Just another time in my life that I can see God working miracles. It was nice to see it in the face of a doctor who wasn't convinced a couple months ago.
My God is good. And my Toby is working hard!!!

So that was our appointments. We left in record time, about 3:30 p.m., came home, made dinner and out the door for upwards practice. It was a busy day, and I'll admit that I am fighting the grumpies today. But I am FIGHTING THEM! :)

Giveaway

2010-01-10T20:04:00.001-08:00

Im trying to get some more traffic over at the other blog. and so im starting a little giveaway for the necklaces that I am making to help raise awareness for Spina Bifida.
This actually raises awareness because 50% of the profts go to The Spina Bifida Association!! :) (unlike putting your bra color in your status on facebook for breast cancer)
so go over to www.spinabifidakids.blogspot.com to check it out and see how to enter. thanks

Popcorn Night

2010-01-08T13:58:00.000-08:00

So, I was sulking one day about the lack of Friday night fun that my family has. I was extremely jealous of a friend who had movie night with her family and let the kids stay up late on Friday nights. I thought how wonderful that would be, but my husband's not so wonderful schedule means that he works on Saturdays. (Its actually his earliest morning of the week)
So as I sat there engulfed in self-pity a thought hit me. Why not still have Friday night be Friday night? Yeah its a bummer that Nate works, but so what if the kids stay up late?
So that is when I initiated Popcorn night. Now I have to admit Popcorn night is not an original "Kari thought". It's something my parents did for a while when I was growing up. We would have Popcorn (of course) watch a movie, and then sleep WHEREVER we wanted to in the house. I can remember on occasion trying to sleep in my closet just because I could.
So now Popcorn night is in my household. Every Friday we rent a movie (we rent it on Tuesday because Blockbuster has a deal where you rent 2 kids or family rentals and you get 2 for free) and break out the popcorn and then let the kids sleep in each other's room, in a tent or something like that. (no closets quite yet) They love it and really look forward to it.
Well, lately, they are super loving Mario Brothers. Thanks to the Wii Nate purchased not so long ago. So tonight is Mario Brother's party night. We are watching some mario brother's 80s movies. I am going to make green cupcakes in honor of Yoshi. : ) SO be looking for pictures soon.
Just a side note. I am so thankful for Becki and really indebted to her for passing on her attitude to me. Her husband is a park police and used to have super crazy hours. (this past new years was there very FIRST one together since they had been married) Well, instead of feeling sorry for herself (like I like to do) she would just have fun with her kids and still make things special. She was the one who told me to just keep the kids up with me on New Years Eve instead of sulking in my bed waiting for my husband to come home. So instead of sulking this New Years Eve I had someone to kiss at midnight..Actually 2 people to kiss. Gracie and Toby!! : ) Anyway, I am so thankful that she just led by example instead of hitting me upside the head and telling me to get over it. Ever since we started this tradition of Popcorn night I have genuinely been a happier person. Instead of focusing on all the things that we can't do I am focusing on the things that we can do. We jut have to tweak them sometimes. What a much happier way to live life.

Necklaces

2010-01-07T09:13:00.000-08:00

I wanted to make sure everyone was able to check out the link to the spina bifida awareness necklaces Ive been working on. Sorry for those of you who have already seen this on www.spinabifidakids.blogspot.com

click here for the link to see pictures on www.spinabifidakids.blogspot.com
50 % of all profits go to the Spina Bifida Association!

My most recent project

2009-12-30T13:11:00.000-08:00

I know..its always something with me. But I've got a new project right now. I've been working on for about a week. give or take a few days.

www.spinabifidakids.blogspot.com there is a link on the right of my blog.

Im super excited about this because I think it is NEEDFUL! It is so hard to sit and google tons of information regarding spina bifida and all the MANY MANY areas of these kids lives.

I am hoping to have others contribute ideas and for it to slowly start growing into a site that is easy to search and easy to find ideas.

It is also a place for all the SB blogs out there. SO you can see how these kids are doing and how incredily strong they are.

It is also a place for people to donate used medical equipment like walkers and such.

Anyway, check it out when you can.

Toby's Bike

2009-12-26T20:05:00.000-08:00

So, thanks to some incredibly generous people we were able to give Toby his first bike for Christmas this year. It was soooo exciting. I will admit that at first he was more excited about his bike helmet. (for some reason he attributes helmets to being a big teenager.)
I love this video sooooo much. In the first 2 seconds you can hear Nate talking to Toby in the background, "Never give up." Then later on you hear Toby tell Gracie,
"I'm gonna beat you"
I just love that we went outside and the kids got to ride bikes together. HOW AWESOME!! Just wait till Milo gets bigger and gets his first bike.
I am just so incredible thankful. sooo increidbly thankful.
One day I hope that Toby can look back on this and truly understand how many people love him. For now, its just a totally awesome bike with a totally awesome helmet that makes him look like a teenager. : )

The Kindess of Strangers

2009-12-15T11:33:00.000-08:00

This entry is really supposed to be about the kindness of strangers. Hence the title, right?
Well, I have to preface it with what happened last night.
Toby walked around a store for over an hour with no breaks!!!
Nate had Upward Basketball practice and so I was left with three kids and Christmas shopping to finish up. I've been really wanting them to pick things out for each other this year so they can be focused more on the giving than the receiving. Well, we went out and I brought the sit and stand stroller and Toby's walker. I was feeling pretty stinkin' daring if you ask me! So of course in the process of going into the store, the walker slides down the bar that I have it hooked on and smashes right into Toby's wrist. He cries and I'm feeling quite bad about it. Well, I decide at that point I might as well say goodbye to him walking because his wrist was already looking rough. We got in the store, and I started walking and Toby yelled out, "Hey, you forgot about me walking?" So I got him out and helped him into his walker. He was getting frustrated about his speed, or lack thereof, when this lady walked up to him. He was totally in her way. Instead of scooting pass him or doing the opposite-getting up in his face and patting him, she just smiled and said, "Hey big man, how's it going?" For some reason this stranger totally helped Toby get out of his funk. He told her about his boo boo and told her about how he cried and how he can walk now. She just stood there and listened like she had all the time in the day. Pretty awesome around the Christmas season. Okay that was stranger 1. So after walking around for an hour, dropping things, Toby has fallen twice at this point, and Milo has gotten pretty fussy. I decided it was well past time to go. So we headed to the front of the store to pay for our items. As I was making my way to the door, this guy comes out of nowhere practically running to get to the door before me. (Now, some people will hold the door for me, but then you can see the look on their face when they realize how long it's going to be before Toby actually makes his way all the way through.) Seriously, this guy must have just been waiting for me to leave, because he just stood there smiling like it was no big thing. Then his wife came out and asked where I was parked so they could help me to the car. This makes stranger number 2 and 3. I told them that I was okay, but thank you anyway. Then of course, Toby, who has already accomplished incredible things that night decided he wanted to step off the curb for the first time. Stranger number 4 came flying out the door of the store and said, "Hold on, I'll move my car. That will make more room and be easier." (He was parked next to us.) So he threw his stuff in his car, waved at Toby and backed out quickly just so Toby could step off the curb safely. Then, back to strangers number 2 and 3. They proceed to stand there and wait for me to get safely in the car with all my kids, the walker, stroller and of course all of our goodies. They waved and left.
These people were just strangers. People that I will probably never see again. But wow, how they changed my night. I have noticed in the past week, (the closer it gets to Christmas) that people in general have been much less willing to wait patiently as we cross the street or move out of Toby's way as he tries to see a toy on a certain aisle. People have been consumed with their lives, their schedules and their happy holidays. It has made going out with Toby, Gracie and Milo a little harder this year. However, last night was different. Those four strangers would have done a backflip if I had said it would have made our lives easier. They went above and beyond any general kindness. I am so thankful for those people. Thankful for the people who forget about themselves and just plain pay attention to the needs of others.
So here's my small challenge from this post. (myself included) Pay attention to the needs of others as you are out and about. It's so easy to be caught up in the good we are doing for church members, family and friends that we can forget about the person on the same aisle as us in the store.

ER...

2009-12-08T13:17:00.000-08:00

So, it had been almost 3 years since our last Spina Bifida-related ER visit. Not bad!! After so many ER visits the first few months of Toby's life I just thought that it would be that way on a regular basis. But here we are almost three years later. Praise God!

Toby had been waking up at night crying randomly and complaining of his head/neck hurting. I didn't think too much of it because it wasn't incredibly consistent. I decided to call our Spina Bifida nurse, and of course it was the usual, "Take him in if he gets any worse." Well, nothing happened Friday, and then Saturday it seemed like all night long. I ended up putting him on some pillows in the living room and sleeping with him out there. I was hoping to keep the rest of the family sleeping.
Well, we went to church and afterward he started telling me he was crying because of his shunt, and that it was hurting during Sunday School. Well, that was enough for me. I nursed Milo, got everyone settled in and Toby and I were off to the ER.

I can not be more thankful to God for how the night went. We had our rough moments, but it could have been so much worse. Toby was truly a champ!! He didn't cry when they put the first IV in. The second one was his undoing.(the first one clotted) Then we went up to CT. About a month ago when we did one he cried his eyes out. This time he said, "Wheeeee." and asked to do it again. The CT guy was nice enough to give him a little ride on the table. Then off to X Rays for a shunt series and again he did awesome. He even told me to stop holding him. He wanted to do it on his own. It was incredible. Then the X ray lady let him play with the dials on the machine. He told her he was going to be a Doctor when he grows up.

After all this (And not eating or drinking because they wouldn't let him), Toby was still a pretty happy camper. Granted he got to cuddle up with Mommy and watch TV most of the afternoon. Then came the results and our neurosurgeon Dr. Tullous. It seems like the pressure that they had adjusted about a month ago was too high for Toby, which was causing the headaches. Once they realized this did not mean surgery for Toby, they brought in dinner. Yeeeeaaah! I am so thankful to whoever came up with the magnetic shunt. They were able to adjust the preasure in about 3 seconds with a simple magnet. INCREDIBLE!

We aren't incredibly sure where we are with all of this. Toby hasn't woken up crying anymore and hasn't complained about his head hurting. However, the doctor warned us that it doesn't mean we are done. We are going in later this week for another CT scan. Hopefully Toby will think it's fun again.

So that's where we stand today medically speaking.

On the flip side. I hate leaving my other two behind for things like this. I am usually exhausted after days like this, but then really just want to spend time with Gracie and Milo. I am so torn between cuddling Toby up because of everything he just went through or throwing Gracie and Milo in my lap and never letting them move again. I really struggle with this aspect of our life. It is a constant battle of balance for me. I am so exhausted that I just want to sleep it off, but I want to make sure my other kids feel loved and important. Monday afternoon, during what was supposed to be nap time, Gracie and I went to Sonic for a quick drink and some talk time. It was nice and much needed. I can't believe how much she is growing up. I wonder how much things like this affect her and how much of this just seems normal to her. I really wonder what to tell her and what to just leave alone. Of course Milo has been able to nurse pretty much whenever he wants and get cuddled. It's hard to balance everything. Really, Really hard. But I'm learning. Slowly....very slowly.

Just another aspect of having a child with special needs. It doesn't just affect the child with the disability. It really is the whole family.

WOW OH WOW OOOOOOH WOW!!

2009-11-27T20:44:00.000-08:00

Okay. So of course I tried to title this to be able to get your attention in some way, shape or form. I really wanted people to see this if you couldn't tell. This happened tonight, and I really couldn't wait another day to share it with everyone. The picture is not super impressive since it was done by my incredibly sick husband with his camera phone. Poor guy, he was barely functioning. I know you can barely tell what's going on, if at all. This is Toby and Mommy dancing together for the first time. Now, granted, we've done the crawling dance and the on your knees dance, but never ever ever the hand in hand standing up dance. This is one of those moments that I'm so thankful that I absolutely cannot take for granted. I was able to dance with my son tonight. WOW OH WOW OOOOOH WOW! And it gets even better. I gave him the chance to sit back down, and he asked for his walker. Then Gracie and Toby danced for the first time together. I know that Gracie doesn't understand this and probably doesn't even remember, but about a year ago she was really struggling because her brother couldn't dance with her and she didn't want to dance the way he wanted to. Well, there you go. Gracie and Toby danced. And then it got even better... Toby said, "I want to dance by myself" So he starts kicking his legs and just dancing all by himself. I say pretty impressive, if you ask me!! Here's the video.

I am so thankful for these little moments. I am thankful that Gracie, Milo, Daddy and Mommy all got to experience this together. There is nothing better than sharing the triumph with family. Well, I am very excited about this. So I better calm down now and get ready for bed and go check on my sick husband. Goodnight everyone. WOW OH WOW OOOOH WOW!! : ) God is sooooo good!

The women who write blogs

2009-11-27T13:19:00.000-08:00

Well, everyone is sick at my home, which means everyone is taking a nice long nap. It's cloudy outside and I'm avoiding the laundry. Nate is sitting opposite me writing on one of his books. (It's starting to get ridiculous! : ) But I'm proud of him.) So I feel inspired to write on my blog. I always tell him that writing a blog is so much better than writing a book. I don't have anyone telling me to change my grammar or that I am being too wordy. I just write, instant gratification. : )

Today I feel truly sad. The internet can be such a wonderful place of encouragement and insight, but it also opens the door to sadness.

I have so enjoyed being on the BabyCenter website support group for Spina Bifida Kids. It has been more encouraging than I could have even imagined, and for that I am thankful. Today I went on (hadn't been on in a while) and found out that a sweet lady on there has lost her baby girl. She was a baby with Spina Bifida who was going in for a shunt surgery. (These surgeries are usually not a big deal at all.) For some reason something went wrong, and she did not make it out of surgery. My heart just breaks for this mom. I don't truly know her personally, but you really start to get attached to these women as you read about their pregnancies and then their births and now this. I am just genuinely sad. Please pray for this mom.

That's the hard part of the support group. It could be incredible news like a child is walking for the first time or incredibly sad news.

From the site I've enjoyed going to other blogs and reading about their children with spina bifida. Especially a dear lady who is a youth pastor's wife!! (What are the chances??) However, I seem to always stumble over someone else's blog and their incredibly sad story of loss and heartbreak. I've read about a mom who lost her twin girls, a mom who has lost two boys, a mom whose child has multiple disabilities and undergoes multiple surgeries. There is just so much out there. However, I am amazed that a lot of these women still bring glory to God. It seems to be (at least the blogs I find) that the women who write and the women who want to share their stories are also the women who still praise God. Who still trust God. Who still love God. They show God's grace through their lives and through their testimonies. I find it interesting that these are the women who write. We have no better reason to share our stories. We have no better reason to write, but than to praise the God who loves us and who gives us the very breath we breathe.

So, I guess my point is. The internet is sad and there are so many sad stories out there, but in the midst of the sadness there are women who are praising God and for that I am truly thankful. I don't know how similiar are beliefs are, I don't know if we believe all the ins and outs of doctrine and the Bible. But I do see their love for God and their trust in God and again, for that I am thankful.
So if any of you women out there are reading this...Please keep writing...Please keep sharing. You are encouraging my heart. I believe we make a difference, whether or not it be a small difference. We are a living testimony of God's grace.

Full Circle...and reminded once again How great my God is.

2009-11-23T19:01:00.000-08:00

Well, it sure has been a while since I've been on here. Don't worry I'm still planning on keeping this up. You see, my problem is I have an incredibly rebellious nature. I know shocking, right? Well, it was recently told to me by an extremely close friend that I am a private person. (that is except for my blog) Well, being the rebellious person that I am, I just didn't feel like sharing all that much on here. If I was going to be a private person then I might as well be a private person all across the board. Why have one venue in which to share, right? Well, wrong and selfish, so therefore double wrong! (The comment by the way was not meant to be an insult in any way shape or form, and I completely understand that. I was being sensitive.) So here I am coming full circle realizing that I might be viewed certain ways even by close friends, but that doesnt mean that I need to stop doing something that has been an outlet for me. A truly wonderful way to open up without having to wait for someone to ask how I am or what's going on. (It's really hard to bring up all the things I've written about in a "How are you" type of answer. It just doesn't flow.)
So I'm back now. It's been an incredibly crazy week to say the least and I have gone through every emotion known to man. However, again God has brought me back full circle. It's wonderful to me how patient God is and how He reminds of who He is and how He is in control of every situation. This week at our church they showed a video from the How Great is our God tour. This was exactly what I needed. This is only a small tiny bit of what helped remind me of how great my God is.
I wanted to share this on here because I know there are moms on here who read who have children who have special needs. Well, this is just one example how God is in control. Hope you have the time to watch. You should Google it and see if you can find the whole thing on line. It was super interesting. Sometimes it is just wonderful to be reminded how Great our God truly is.

So...the appointment.

2009-11-14T12:45:00.000-08:00

Well, I'd just like to say how incredible it is that God takes care of things.

Since I didn't know about the appointment beforehand, I had to bring Milo along with me (he's still nursing) and then of course Gracie to help with Milo. So picture Milo in his stroller, Toby in his wheelchair with Gracie pushing, and Mommy pushing Milo while trying to balance a day's worth of stuff in a bag and a walker. It took forever to get through the parking lot. Luckily Nate (my husband) was able to meet us there just in time for Toby to get called back for his CT Scan.

The problem with the CT Scan was that most kids at Toby's age need to be sedated. Well, praise God, we never have. The problem with that was that we weren't prepared if Toby had needed to be sedated. He had already eaten that morning. So they warned us that we would be sent home if he didn't cooperate with them. Meaning we would do this all over again another day. So I went in there with him, and as soon as he saw the machine he started crying. They threatened, and so I did what any mommy would do--I went and got daddy. Long story short, we made it through. Toby calmed down and they actually let Nate lie on it with him. He went and got some x rays done after that, and we were done with the hard part.

So, the pressure with his VP shunt is messed up, and his ventricles are too small. They adjusted the pressure, and so far we've had no negative side effects. We will go back in three months to see if adjusting the pressure worked.

Nate was going back to work, and I was going to be at the hospital all day with three kids.

One of the incredible parts is that a girl in our youth group happened to be in the area on the same exact day as us and the same exact time. What are the chances except that God had His hand in that? So Nate went back to work, and I had help all day long. I honestly don't think I could have done it without her. Physically I don't know how I would have even made it, not to mention emotionally. I am so glad that God takes care of things. Even when we don't think we need His help. She was incredible. She rocked Milo, played with Toby and listened to Gracie's constant talking. I cannot even explain how thankful I am. God is so good.

Then we see our wonderful Orthopedic surgeon... (I'm being sarcastic.) He tells us that we should be happy with how Toby is walking (which is very, very little) and to plan on a wheelchair mainly. He said his knee is messed up, but not bad enough to fix, and then proceeded to list off every muscle Toby does not have. Sweet man. So here I am heartbroken. We've been working so hard on walking and standing. making him wear those stupid braces for what??!! It's horrible to think that you are forcing your child to do something he really physically cannot accomplish. Well, I get over it and just continue on. My friends on the Babycenter support group encouraged me to just let Toby do what he will do and not listen to doctors. (Great advice, by the way, if you guys are reading this.) So that was my plan.

Then, Toby decided to give me another great moment. A moment which gives me the courage to say, "Stupid doctors, we can do this, Toby. God can do this Toby."

This is Toby cooking pumpkin pancakes with me and Gracie.

This is my moment. Looking at this picture I am reminded of how much God has done, and how far He has brought us. A year ago if you told me that Toby would be standing on a chair (with his braces) and helping me cook I would not have believed you. But that's what he did. We took a risk. The risk of his falling or being scared and just set him up there and let him cook with us. What a great moment!! These are the moments that keep me going. That keep me from focusing on doctors who might not be the most sensitive. These moments help me scream, "YOU CAN DO IT!!"

So here I am writing this post about Friday night when already Today had another incredible moment.
Toby pulled himself up to stand today and stayed standing for the first time. His braces weren't locked, and he just stood there at the coffee table playing. Then he cruised over to the ottoman and even to the chair. He has never done anything like that before, especially not with his braces unlocked. So I stood there watching in amazement. (But tried to act like it was no big deal--Toby doesn't like to put on a show.) Inwardly I was cheering and jumping up and down; outwardly I walked around picking up toys.

Soooo....Dr. orthopedic surgeon man take that!! God and Toby will decide what Toby can do. Not you! : )

I'm thankful that God allowed me to see this firsthand so quickly after the appointment.

Tomorrow is well...tomorrow.

2009-11-11T20:41:00.001-08:00

So today I found out that tomorrow is clinic day for Toby. About every 6 months we end up having a long day of appointments...tests, doctors, x rays and ct scans. The thing about these appointments is that the night before can easily put me into a panic.

I never know what tomorrow is going to hold. I don't know if tomorrow will be uneventful. If They will check everything and we will leave on the same road that we came on. Or if tomorrow will change the next days, weeks, months or even years. Walking into these appointments I always have in the back of my mind that they could find something on the CT Scan or see something else wrong. I never know when a new surgery will be scheduled or a new type of therapy will be added. The whole process of these days is overwhelming for me. I don't know if this will be the year that they have to sedate Toby for the tests, or if there will be a cute nurse that he will flirt shamelessly with. I guess that's the scary part. I just don't know anything going into them. Since they are so far apart there doesn't seem to be a general norm that I can get used to or that Toby can get used to. Don't get me wrong; I don't want them any closer together!!

Tonight I decide to tell Toby about going to the hospital in the morning. I thought that he was old enough to not be shocked tomorrow when he woke up and found himself on the way to see doctors and getting put into a CT machine. Maybe a bad decision on my part. He started crying and started saying that he wasn't sick. It's hard to explain to a three year old that they aren't sick but still need to see a doctor. Daddy of course was Daddy and distracted the destruction that Mommy created by promising to play a video game when he got home.

So for now, tomorrow is well...tomorrow...

I hope that tomorrow will be just a normal day of checking up or even a day of finding out good news. But there is always the chance that we will leave with a new mountain to climb over with Toby.

Please pray for Toby. Pray that he won't be scared. Pray that nothing will hurt.

Please pray for me. Pray that God will give me wisdom as I help Toby and try to teach him how to be brave but to rely on God for his strength.

Please pray for Milo. Pray that he will be good and patient through tomorrow.

Please pray for Gracie. Pray for Gracie's understanding through these appointments, pray for her patience, and pray for her to be the strong big sister.

Toby's Bike.....

2009-11-10T12:19:00.000-08:00

This is Toby.

This is Toby's bike....Well the bike we want Toby to have.

Weve heard about these bikes for at least a year now and have really wanted to get him one. The problem is they are not the normal bike price...to say the least. We are working on raising money for this bike for Toby. It uses hands instead of feet to petal. It helps with balance and strength and honestly it just looks like fun.

One of the hard parts of Toby's life is just trying to keep up with the other kids. He does an incredible job when crawling, but since we are really trying to work past that he's been getting frustrated. I really believe this could help encourage him to keep working.

well, I got online looking for a used one...no luck. Then I found this website

www.adaptivemall.com

They have what they refer to as a Kiddiepool. You put in a request for a piece of equipment and people donate towards it. I am so excited about this. Nate and I have been working on a garage sale to help raise money towards this, but would really love any help.

If you know of any companies or individuals that would like to donate towards Toby's bike please let them know about us!!

The exact address for the donation is www.adaptivemall.com/tobyt.html

please be praying for this. I know it probably seems like such a little thing, but its super important to us.

The Miracles

2009-11-07T19:12:00.000-08:00

I've been wanting to write this for a while, but with three little kids keeping me busy it seemed like my time was cut very short. Poor Milo has a double ear infection, roseola and is teething on top of it all. Needless to say he didn't find it needful for me to have any extra time to sit down and write.

It's been a while since this story actually took place, but I thought it noteworthy enough to come back to.

There are aspects of our lives that are hard, and there are aspects of our lives that our wonderful, but then there are those aspects of our lives that are hard and yet so incredibly wonderful at the same time. Hope that makes sense!

My husband is the youth pastor at Leon Valley Baptist Church, so of course our children are regulars in Sunday School. (It always makes me smile when their attendance charts are completely full.) Well, for a while there they were studying different miracles that Jesus performed. If you are at all familiar with the Bible I am sure you are familiar with Jesus healing people who could not walk. For a couple of weeks Gracie would be bringing home pictures of a man on a stretcher and then walking. She would bring home papers with verses about how Jesus healed this man. I should have been putting two and two together. I should have known how Gracie's mind worked at this point, but I didn't. So here I was sitting in the van exhausted from a long Sunday morning waiting for Nate to finishing locking the doors, and this is what I heard.
"Toby, Jesus can make your legs better. Jesus can make you walk. We can pray. Jesus can do miracles." This said as she patted him on the shoulder as she was walking to the back of our minivan.
Of course my first thought was to hush her so she didn't confuse Toby. But then the second thought hit me. Her little heart had so much faith. It was not a question of if God would or if he could. It was a statement, HE CAN! Miracles might take place differently than they used to, but they still take place.
I look at the video that I just posted a couple days ago, and I think, wow, she was right. Jesus can make him walk. We can pray. And Jesus can do miracles.
I'm so thankful for Gracie and how she can show me what true faith looks like.

The sidenote of this whole story is that Toby sat there and said, "YEAH!!" very excitedly to her statements. Every statement was answered with a hearty, "yeah!" He might not have understood what Bible story she was referring to or how this would work, but he was totally with his sister on her plan.

So, this story came to my mind the other day as over the last week I have seen such a miracle take place in my son. I've seen God work.

I just want to write a list of the little miracles that have taken place this week, even if for my benefit only.

1. Toby asked to walk for the first time.
2. Toby asked to stay standing instead of sitting down when given the option.
3. Toby fell and didn't cry and asked to stand back up right after.
4. Toby walked through Chick-fil-A.
5. Toby stood on a stool and washed his hands.
6. Toby asked for his braces.
7. Toby became more confident.
8. Toby opened a door knob.

Thanks for letting me share this with all of you. I hope you enjoy reading this as much as I enjoyed writing it. I love sharing what God has done--especially when it is so clear that HE has done the work!

Our Story...Back to the Beginning III

2009-11-06T18:56:00.000-08:00

This is just a continuation of two previous "Our Story" entries, so don't read this until you've read the earlier ones.

As we walked out of that small room into the open the nurses all stopped what they were doing and tried to give encouraging smiles and sympathetic looks. How little I knew that day how much I would come to hate those sympathetic looks. Dr. Greig walked us to the front and we made an appointment for the next week to ask questions and get some answers. We opened the door and walked into the waiting room where all the happy pregnant women and their husbands sat awaiting their appointment. I felt like I was branded with the word "defect" and somehow everyone knew and could tell. My heart ached like I have never felt before. A guilt that is indescribable came over me. Flashes of mistakes that I had made ran through my mind. Missing prenatal vitamins here and there, eating junk food, drinking coffee. I had no idea at that point how often I would feel that exact way and think those exact thoughts. We walked to the car in silence.
“What are we going to do?”
There was no answer to my question, but there didn’t need to be.
As my husband drove I looked over at him. The football player in high school, the athlete, the track runner, the basketball player. He wanted a boy to play with and to teach all of those boy things to, and now those dreams were gone. I ached for him more than for me. The loss of the dreams a father has for a son. I believed that his losses were far greater than mine.
I cried on the way home. I told him I was sorry, and I cried. He didn’t say much. He held my hand. My cell phone was ringing, but I didn’t answer it. How in the world was I going to tell our friends and family that were waiting for the, “Everything’s fine.” call? Because that’s exactly what everyone was waiting for. No one was expecting this. One of my friends kept calling. Nate finally answered and just told her that I would call her later on. For me one of the hardest parts was telling others.
I dreaded walking next door to my neighbor’s house, Debbie, to pick up our daughter Gracie. I went to the door and just asked for Gracie and left. I don’t think I said anything at all. Obviously Debbie figured out on her own the appointment didn’t go well. Larie, the one who went to Barnes and Noble with me, knew that something was wrong since I hadn’t called her yet. The night before we had planned on her and her husband Phil to take Gracie our daughter with them for a couple hours in the evening. She called to make sure that was still the plan. They came over that night to pick up Grace, and I know I told her the appointment didn’t go well. Those were the words I used a lot that day. It seemed like a good opening sentence to bad news so I just kept it. Through the evening, somehow phone calls were made and people started finding out. Nate called our pastor at the time, Dr. Gary Reimers.
I vaguely remember Nate saying that we didn’t need anything, just prayer. I can’t even tell you how much I prayed that day. I didn’t pray deep thoughtful prayers, just the same words over and over again.
“Lord, what are we going to do.”

Toby Walking

2009-11-05T08:04:00.000-08:00

Toby's therapist unlocked one of the drop locks on Toby's KAFOs last visit. Well, I wish I had a "before" video. But there is a HUGE difference. Keep praying for Toby.
This video was done with my phone, but I think it's still incredible!!!

Thank you

2009-11-03T12:10:00.001-08:00

I just wanted to write this real quick because it was on my heart and I wanted to share.

I have been shocked to hear about so many of you who are reading this. There are people from our church, people from support groups, facebook, family and friends. There have been so many of you who have shared words of encouragment and understanding with me. Thank you. If it were not for the encouragment of others I don't believe I would take the time to continue sitting here to write. God has been so good to us and to me personally. Your words of encouragement have been such a huge help to me. I really wish I could explain it to you. Every time someone sends me a note or stops me at church to tell me that they read something, it means the world to me. (You all know who you are.) God is using you and your words to show me His grace daily.

Please keep on commenting, keep sending me notes, keep stopping me on the sidewalk. I am so thankful for each and every one of you.

If you'd like to receieve notifications for when I post something new, you can hit the follow button on the right of the screen. (You need a Google account.)

Thank you all so much for all the encouraging words you have been giving to me about this blog. (You know who you are.)

Our Story...Back to the Beginning II

2009-11-02T20:09:00.000-08:00

This is just a continuation of the previous entry.....
so don't read this until you've read the first part of the story.

Nate was working at a car dealership at the time and he got off work to make sure he could go to my appointment with me. I had no idea that walking through those office doors would change my life forever. The nurses were incredibly kind and were talking happily and telling me all the things they were seeing. Then they became quiet. They were still friendly, but they kept looking at the spine and taking pictures. Then the big giveaway happened. They moved me and my husband to another room. They wanted to get better pictures of the baby on a 3-D ultrasound machine. I kept telling Nate that something was wrong.
“It’s taking too long.” I said.
He just patted my hand and told me to wait to see what the doctor said.
Then another giveaway. The doctor came in and kept patting my leg and asking me if I was okay lying down while they were doing more pictures. I said I was fine. I was too afraid to ask any questions, but I knew.
Then the next step. The doctor left and a nurse came in and directed us to an office. It was a small room with a large recliner in the corner, two chairs in the other corner, a doctor's stool and a small desk with a small television. The nurse directed me to the recliner, which I sat in until she left the room. As soon as she left I moved to one of the two small chairs in the corner next to Nate. It was just a couple minutes when Dr. Greig came in the door. He pulled up the stool right in front of us and said, “Well, it’s not good news.” That’s when everything came spilling out. I don’t even remember everything that was said. I remember things like, “wheelchair, kidney function, walk for a while, good quality of life, defect” I cried. It seemed almost fake to me. I remember thinking I shouldn’t be crying; I should be in shock. Shock should be coming first, not tears. So after one loud sob and the doctor patting my knee and telling me that it was okay to cry--I dried up. For some reason having Dr. Greig give me permission to cry made me want to stop. We didn’t get a lot of information that day. Dr. Greig didn’t want to overwhelm us. I remember thinking, "I need to keep a good testimony." So I heard myself saying, “God won’t give us more than we can handle.” Of course I said that before I knew all of the ins and outs of Spina Bifida. At that point I had no idea what our life was going to entail.

Our Story...Back to the Beginning

2009-11-01T13:25:00.000-08:00

I wrote this a couple years ago. I wanted to start keeping track of everything I felt and everything that went on during the beginning of our new normal. I know that some of the women reading this blog are pregnant with babies who will have spina bifida. I wanted to share my story, especially for you.

“Don’t worry. This is just a precaution. We are sending you to a specialist. I really don’t think anything is wrong.” All of these words were said to us by our sweet Doctor Price after my eighteen week sonogram. He explained to us that something looked funny about the baby’s head, but everything else looked great. The doctor only thought the baby’s head looked flat on one side because of the way he was positioned in the womb. For safety’s sake only, we were sent to a specialist in fetal monitoring. We had the sonogramist write on a piece of paper the sex of our baby and seal it in an envelope. We wanted to find out by ourselves. My husband was hoping for a boy, and secretly I was too. We got in the car and looked at the envelope.
“Maybe we should wait.” I said.
My husband wanted to open it. The words of my doctor kept going through my mind. “Don’t worry.” Nate said.
I couldn’t help it; I was worried. He used the term Spina Bifida. It was the first time I had ever heard those words. I had no idea what that even meant, but was too embarrassed to ask.
“Let’s open it.”
I was excited, and so I said okay. He opened it from the front seat.
“It’s a boy.” he said.
“No way. No way. You’re kidding.” I thought he was just being mean. I didn’t believe it 'til I saw the simple yellow sticky note, with “It’s a boy! Congratulations!” written on it. I cried. I jumped up and down on my seat and cried. On the way home I made the traditional phone calls to parents, family and friends. The only thing different was that I added, “There might be something that’s not quite right, but probably nothing.” We picked up our daughter from the babysitter, and that’s when I started really worrying. What in the world is Spina Bifida? I need to be prepared. I need to know before this specialist appointment so I don’t look like an idiot! So I called my Best Friend Larie who had just moved into town, and we went to Barnes and Noble and looked up special needs children and tried to find something on Spina Bifida. I found very little. I kept getting confused with other terms and mental retardation. I honestly thought it was the same thing as Downs Syndrome. So I left with my mind spinning even more than before and more worried than before.

Graci Lou

2009-10-30T12:40:00.000-07:00

I was telling my friend the other day how excited I was about this blog that I'm doing. It has been so good for me and super encouraging to hear everyone's comments. Anyway, it hit me that she has an absolutely incredible Etsy store.

So I added a little button for her site on the right hand column and wanted everyone to know that if they purchase something from her etsy store to make sure they mention "raising toby" so that they can receive 10% off.

Her stuff really is beautiful.

Also, I was thinking about all you mom's out there with special needs kids. (Of course especially the ones with Spina Bifida) How perfect is this for our kids to know how incredibly strong they are?

A superhero cape!! Seriously, I love this! Especially with their name on it!

Anyway just wanted you to know. Thanks for checking her out.

When you get surprised

2009-10-30T12:08:00.000-07:00

So, today we had our appointment with Toby's Orthotics guy. (I can never remember what they are really called) I wanted him to check on the work the guy in Florida did and make sure he thought Toby's heel was getting better.

So out I march with three kids. Gracie, (who has a weird rash on her face) Toby,(who isnt happy about getting his braces worked on) and Milo (on his last diaper)

Oh and dont forget, Me. (whose coffee pot messed up and hadnt had a cup of coffee yet)

We were certainly a fun bunch.

So we get there and everything is going well. Jim gives us the go ahead to start wearing the braces again and works on one little piece. Before we leave we put Toby's braces back on.

At this point it had been over two weeks since the last time Toby wore the braces. It showed. He just broke down on my lap. He cried and cried. Part of it was just plain bad and part of it truly broke my heart. Life is so much easier for him without those braces. He can crawl around playing and do almost anything he wants, besides walking. He looks at those braces as something that is holding him back, not something that is helping him. He's three and just doesn't understand that he cant crawl around forever. Those braces weigh him down and make it so much harder for him, but the also give him the ability to stand, to walk and to experience things he would never be able to without those braces.

It has struck me plenty of times that there can be things God places in our lives for our good, but we just view them as getting in our way. I know that Toby's braces will make him stronger, but he doesnt. I believe it's the same way with us and God. God knows that our trials will make us stronger even if we view them as hurting us or keeping us from the life we want. I know that God has used trials in my life to allow me to experience a relationship with Him that I dont believe I would have ever experienced if not for those hard moments.

So, I'm sitting there holding my crying son while Jim is trying to talk to me about what is going on. One of Toby's knees is messing up, (he used a more medically correct term) He let me know that if we don't get him up and walking that its just going to be harder and harder to ever get him to that point. At this point now I'm feeling pretty overwhelmed by this thought, which is being magnified by Toby crying and now Milo has gotten in on the action.

This is where the surprise part comes in.

Jim stops and looks at me. He stops talking about how we need to push Toby to do more and says, "I think I'm getting a glimpse of what you are up against here." (refering to Toby's crying about the braces) "I know this must be hard and that as a mom you just want to take them off."

There was nothing poetic or incredibly deep in those two sentences, but they made big tears start filling my eyes. As I felt the tears I really thought, WHOA where is this coming from, but then I realized. Jim did something that not many people do in the medical community.

He took the time to validate how hard this was for me as a mom. He took the time to let it be not just about all the medical junk, but about the emotion behind it all. The fact that he recognized that, helped so much. In my life we havent been around many who are willing to take that step.

So for today, even with the rough morning, I am thankful. Thankful for a couple sentences that God used to help me be prepared for the next few days of getting Toby used to wearing his braces again.

Holding Hands in a Wheelchair

2009-10-28T21:11:00.001-07:00

As soon as I saw this picture I knew I wanted to put it on here.

Can you see it? Can you see them holding hands? This is Johnny and Toby. I love this picture so much because it's something Toby doesn't get to experience very often.
Holding hands with a friend seems like not a big deal, but to me it is.
Most friends don't consider holding Toby's hand because of the chair. Not in a mean way, it's just not something that is thought of.
I use to think that this was something important only to me, but honestly the more I think about it I think it's important to Toby also. I love watching him smile when someone reaches for his hand.

Of course Gracie had to get in on the fun!

I wanted to put these pictures up because it is such a small thing to overlook or view as unimportant. I believe that moments like these are some of the most important. They make your child feel loved, a part of everything and the same as any other kid. Don't overlook these little moments in life.

Seek out these moments. They really are the best!!

Milo didnt want to be left out of this post.

The Fingerprint

2009-10-24T20:11:00.000-07:00

Its funny to me how a small moment in your life can change it so completely.

The interesting part is that I cant even remember the day or month that it happened. But it happened and today I am a different person because of it.

It was a Sunday morning and I was sitting in Sunday School. Nate (my husband) was teaching the teenagers (he's the youth pastor at our church) and I was beginning to zone out. Sometimes it's really easy as a youth pastor's wife to think that the message doesn't apply to you because it's geared towards the teenagers. Not true.(and by the way I know that's horrible)

This particular morning Nate was talking about children with disabilities. This of course caught my attention a little bit.
I heard him read an incredibly familiar verse.

Psalm 139:13-14
For you formed my inward parts;
you knitted me together in my mother's womb
I praise you, for I am fearfully and wonderfully made
Wonderful are your works;
my soul knows it well.

Sometimes I think the problem with these verses is that they are so familiar that they can go in one ear and out the other. You can forget to sit there and really soak up the meaning.

Okay, lets step back about three years.

When I first found out about Toby's diagnosis I did not struggle as much with the usual, "Why God?" I struggled with guilt. I hate to even use the word guilt because it doesnt seem to really capture what I was feeling. When you think of the word guilt it's easy to picture a child doing something wrong and getting in trouble, and in turn feeling guilty about what they had done. This was so much more than that. I felt completely and utterly devastated by my guilt. Toby's diagnosis of Spina Bifida was my fault or so I thought. I was the only one responsible for taking care of him and carrying him for 9 months. I had failed. I never got truly angry with God I was too angry with myself. I struggled with guilt about every aspect of his disability. It was a sickness in my stomach that I could try and push away but would in the end overwhelm me. There was so much guilt that I couldnt even talk to anyone about it. It felt almost like a guilt I was trying so hard to hide, but in my hiding it I was actually sealing my guilt that much more.

For about three years I walked around with this guilt. It was always with me no matter where I was in my life. I'm not trying to be overdramatic, but I do want to get across how completely overwhelming it felt.

So jump ahead to the Sunday sitting in Sunday School class. Nate was discussing this verse with the teenagers. I had only read this verse in the King James Version and he was talking about the actual meaning of the words. He really focused in on the word, "knitted." This word really stuck out to me. Before Nate and I even got married Larie's now mother-in-law, Robin Buck was trying to teach me how to knit. I'm kind of a hard student to have so any time someone takes the time to teach me something I really appreciate it. I really enjoyed those lessons with her and while I was sitting there in Sunday School class I was picturing myself struggling with every little knit that I was trying to do. It took me FOREVER to get something big enough to be considered even a dish cloth. (kind of wishing I had kept it up) The reason that's important now is it started changing the way I viewed Toby. I am completely one of those people who learns through pictures or examples. Well, I'm picturing God knitting my son together for the first time. I've always pictured Toby's back as a horrible mistake, a defect as they call it in the medical community. Something that God wasnt responsible for, but something I was solely responsible for. That day in a teenagers' Sunday School class an incredible truth came into my heart. (It's incredible how God works) I looked at Toby as being knitted together completely the way God wanted him to be. Not a mistake that I had done to him. God knew every single part of Toby. What an incredible burden that was lifted off my heart that day. I don't understand why it took so long for me to come to understand that or why it was that particular Sunday School class that got my attention, but it did.

I want to put a little segment of Nate's book here because this was the other part in the Sunday School class that he went over that completely blew my mind.

"Did you realize that you are the work of the only true God? The One God who formed and created all heaven and earth and the same God who only has power to rule all creation is the same God who took the time and care to mold you as a potter molds the clay! This fact should make you jump out of your seat and praise God for your creation. You are the possession of the King of Kings and Lord of Lords. Perhaps some perspective will help you wrap your brain around your personal value. The price of a well-made quality guitar can range anywhere from $250.00 to $1,000.00. Now you take that same guitar and have a big name country music star sign the guitar all of a sudden, the value of that guitar skyrockets. The personal signature of an important person adds to the value of the object. You have the signature of God in your life. If the signature of a country music star can add to the value of a guitar, how much more would you say the signature of God adds to your value? You are priceless because God created your personally and left His fingerprint of expression."

If you know anything about Spina Bifida you know that Spina Bifida Mylomengicele is basically like a hole in the back where it didnt close at all. The damage done in the womb is there forever. Toby's spot on his back was not bubbled out at all but flat. He ended up having three different back surgeries to get it completely closed. The last one they had to really stretch the skin and he ended up with the shape of an oval towards the middle. I know it might seem a little cheesy but as I've said before I learn things by pictures. I look at that oval and really picture in my mind God putting His finger on Toby's back knowing exactly how He is knitting Toby together. Not only knowing, but making Toby even more important because Toby got the permanent signature of God on his life. Toby has God's fingerprint on his back.

That day God helped me to look at my son and myself in a different way. That day God wiped away my guilt and gave a peace that I am still holding on to.

I know that Toby's life is so important and that God is using His life to bring glory to Himself.

Vacation Fun

2009-10-22T11:37:00.000-07:00

We have had an awesome time this vacation. It's been crazy, but incredible. For part of the time we were able to go up to Greenville,SC to visit my parents, meet Nate's editors and see the college campus again.

My parents took us to the Japanese Steakhouse that was in town. Toby wasnt quite so sure about the fire, but after a while he eased up to the idea. Milo was never too sure about it.

Then of course the most fun thing was the free thing. My parents found some empty box lids and let them slide down their front yard. (I'm sure we looked very classy while we were doing it) The kids had a blast and thats what was important. I dont know why the things kids love the most are also embarrassing!

To me there is something incredible about seeing Toby play a game that doesnt have to be rethought or redone to make it possible for him to participate. I feel like a lot of our life is spent doing just that. This little game was perfect and just plain good for my heart because he played the same exact way Gracie did

Crying in IKEA

2009-10-20T19:55:00.001-07:00

So, tonight I took my first ever trip to IKEA.

So, tonight I cried in the middle of IKEA.

Let me explain.

In my head a feel like I have a running list of things that make me sad in regards to our life with Toby. For example, I might see a child do something that Toby will not be able to do. Knowing that it will not be a part of Toby's life and knowing that there is nothing to do at the time about it I just tuck it away for another moment. There might be things that will make me sad but wont be things that I can do anything about until Toby is much older. So I just tuck that tidbit of information and put it away for maybe another time to be sad. (since it wouldnt be appropriate to cry in a store...say...like IKEA! :)
I truly believe this is a survival mechanism God has given me to help control those moments of sadness that seem to come at inopportune times. I'm sure some of you other mom's must know what I'm talking about. The moments at playgroups or walking around the mall or of course even walmart. You cant just stop grocery shopping and sit down and cry. So you just add it on to the list and it seems the list gets longer and longer.

Well, there are certainly plenty of things on my ongoing list that I do not think on daily. (I would be crazy now if I did) And sometimes I can even forget about them until they resurface.

So, picture this with me. I'm walking around IKEA with my friends and Toby, Milo, and Gracie just enjoying the atmosphere and trying to figure out things I can fit in my suitcase. (Im still in Florida) When I come across this

Doesn't seem like too big of deal, right? WRONG!! In the store they had it set up with a mattress on the ground where the hole is. So it was like a bunk bed but with the one bed on the ground. That's when it hits me. I get to do something that I don't get to do very often.

I scratched something off my list.

You see one of the things that had made me sad when I realized I was having another boy was the fact that I couldn't picture them in bunk beds. I always pictured brothers in bunkbeds.. I know it's a little wierd, but just one of those things. Well, the problem was that I couldn't wrap my mind around how Toby was going to be able to have a bunkbed with Milo without having to make it look weird with steps and all kinds of things added to it.(I really like things to look as normal as possible) So when I saw the bed at IKEA I realized that here was an answer. I know longer needed to feel like this couldn't be a part of their lives when they got older. It very well could be and it could still look nice. I pictured the boys just sitting there on the beds hanging out just like any other brothers. So that's when the tears started. In my mind I took that thing off my list and something incredible happened in IKEA.

My list got shorter

P.K. Hallinan

2009-10-15T11:10:00.000-07:00

ONE of the many things I wish society would do differently in regards to handicapped children is adding pictures of them more frequently in books and on television. I'm not talking about a sweet little book about the little boy in the wheelchair and how he uses it. I'm just talking about having the little boy in the wheelchair be some part of the story, maybe even the hero of the story, without having to mention his wheelchair. I think there is a downsize to stories about wheelchairs for children because it draws attention to the chair instead of to the child that's in that chair. I know there are plenty on their who know someone who is just an incredible person who just so happens to be in a wheelchair.

One of the author's that I believe does a good job of this is P.K. Hallinan. 'When I grow up' is just one example. His stories just have a little boy in a wheelchair scattered throughout the book, without mentioning the wheelchair itself. Now I will have to say that not ALL of his books do this, but there are quite a few.

Now before you mom's who might not have a child in a wheelchair dismiss this post as not pertaining to you. WAIT
How much better for your child to see on a casually basis pictures of children in wheelchairs? How much more prepared would your child be when seeing a child in a wheelchair? Yes, it seems like a small insignificant thing, but I think it's big. I think it's really big. I want my son to go into McDonald's just like any other boy without children staring and whispering. (yes, granted that is incredible normal) but don't you believe that it would be a lot less striking of a sight if your child had books or shows that had children in wheelchairs on a regular basis. So here's what I'm asking of everyone reading this: (Whether you be a grandma, aunt, cousin, friend, or sunday school teacher) could you find a book for whatever children are in your life with pictures of a child in a wheelchair? Maybe we can really start someting. Not just for Toby but for all those children who truly want to be seen for you they are and not for what they are sitting in!

P.K. Hallinan is the only author I have found so far that does this. If you know of any other's please let me know!!

Normal to Crazy in 2.5 Seconds: KAFO's

2009-10-14T12:05:00.000-07:00

I'm sure any mom can undertand this.

You think your day is going well. There might be one small issue going on but nothing big. You're sitting around and decide to call up the ______________ (fill in the blank: doctor, therapist, orthopedic specialist) to mention what you seem to think is a small issue.
That's when everything changes. Your small issue turns into something much more serious then what you thought. You go from the mom who has it all together, to the mom who doesn't have a clue what's going on.
Not what I would consider a fun time.
As I've said before we are on vacation right now. It has been pretty uneventful concerning Toby. Especially for being at such a new point in his life with really pushing for walking and other things.
About four days ago Nate and I noticed a small red circle on the back of one of heels from his KAFO'S (leg braces). I thought, no big deal, leave them off for a day or two and it will be better and we will put the braces back on. The problem being three days later the red mark was still there.
Well, Im still in the 'no big deal' stage. Yesturday, I decided to put in a couple calls back to Texas to find out what we needed to do.
Within what seemed to be a couple seconds I found out that it was indeed a more complex problem. We needed to start putting heat on it, massaging it and work on finding an orthotics guy down in Tampa.
There is something about trying to find someone who is willing to work on something as imortant as a KAFO while out of town and trying to work out insurance and all that. Well, as I sat there stressing out and worrying, God was working everything out. God knew that this would happen and would also know how the outcome would be. I called the Spina Bifida clinic in Florida yesturday and really thinking I wouldnt here back from them. At 8am this morning they called back,(which is an incredible time frame) by 9am I had found an orthotics guy that would see Toby any time TODAY! By 2pm Toby had his braces fixed by a wonderful man and we left the orthotics office without ANY bill whatsoever. He worked on his braces completely for FREE!

Can there by any other reason of this afternoon going so well other than God working? NO WAY! I am so incredible thankful that God knows everything we will face before it happens and not only does He know, He takes care of it.

There were hard parts of the day for sure like when Toby started crying as soon as the man walked in because he had a white coat on. Or when I didn't have my cell phone on me to get the number for our office in Tampa. There will always be those hard parts of any of these types of situations. But I know that I can either sit here and think on how sad I was when Toby cried or how stressed I felt about not having my phone...OR I can focus on the incredible grace of God and how He completely and utterly took care of this for me.

The Incredible People

2009-10-08T19:01:00.001-07:00

Today we returned to Greenville, South Carolina for the first time since Toby was 2 months old.
Greenville holds some incredible memories for us. It was where we went to college, where we had our first apartment, first home, first child Gracie was born and where we found out about Toby's diagnosis, gave birth to Toby and spent four long weeks in the hospital with him after birth. This is where people rallied around us, prayed for us and supported us. This will always be considered my home to some degree.

I am reminded of all the incredible people we had in our lives while we were here, some that we still keep in contact with and some that we will most likely never see again. God used so many people in our lives through those months I could not imagine mentioning them all, but I do want to mention a few. I believe that looking back at times like this can truly help us see the goodness of God.

There was Dr. Greig who was the one who first broke the news of Toby's Spina Bifida. He was the "worst case scenerio Dr." The one who pats you on the leg while he tells you how bad it's going to get. He's also the one who lets you cry. He's the Doctor with the big box of tissues in his office. Dr. Greig acted like he had all day long to sit there with us while we cried and tried to soak up all this information. I never felt guilty for cying in his office.

Then there was Jean Brown. She was the head nurse of the Spina Bifida Clinic. She was the one with all the information. She gave you the facts and only the facts. She told you the worst case and the best and then let you know the chances would be you would be right in the middle. She didn't have time for your tears. (not in a bad way) She was there to equip you. To make you into the fighter that you needed to be for your child. She'd let you know everything you needed to know, but not one sentence more. She made me realize that I could take care of Toby and if I had any doubts, well, I just didn't have a choice. There were days when I needed that more than anything else.

Then there was The Blakes. They were the family that didn't beat around the bush. They didn't tiptoe around you at church because they were afraid to upset you. They asked the hard questions and sat their and listened while you gave them all the answers. They were the people that you got to rehearse everything to that the Doctor's had told you. It sunk in a little more to say it aloud. Then they would hug you like there was no tomorrow and pump you full of incredible food before you left their home. They were the listeners. Days when that was all I needed someone to listen.

Then there was Debbie Jones. She was the practical one. The one who gets no glory. Not the one who is holding your hand at church or sitting at the hospital with you. She's the one that sits at home watching your other child and making sure you don't worry about making it to any appointments. I don't know what we would have done with out Debbie. She never once asked for anything in return. She was just always there and always willing. After we got the diagnosis for Toby we went over to her house to pick up Gracie and she never asked a question. She just did her part and kept being willing to do more.

Then there was Larie and Phil. The friends that are once in a lifetime friends. Larie was the everything person. The shoulder to cry on, the practical one, the listener and the fighter. She matched whatever I needed on any and every day. When I was ready to fight, she put on her boxing gloves, when I was ready to cry and not go on, she was crying with me, when I needed someone to take Gracie or go with me an appointment, she was riding in the car or taking Gracie to McDonald's. When I needed to talk everything out, she listened without offering advice. I know that Phil sacraficed a lot of time with his wife through those months. I know he was there to let Larie cry when Larie was got home from crying with me. He was the supporter Larie needed so that she could be the supporter that I needed. I am so thankful that God moved them to Greenville when He did.

Looking back there was so much I needed through that time in my life and it is incredible to look back and see that God filled each and everyone of those needs. It gives me the hope to know that God is going to continue to fill those needs through the coming days, months and years.

I know that if you have a child with special needs there is a list of people you could think of. Maybe you can sit there and list them all out, but my challenge today is to look back and thank the Lord for providing those people for you and maybe even call them up and thank them. Chances are a lot of them had no idea!!

A trip with baggage

2009-10-05T12:50:00.000-07:00

Going on vacation is something that we always look forward to. We leave tomorrow with Nate, Gracie, Toby and Milo all together. Nate will come back home after a week to go back to work and Gracie, Toby, Milo and I will stay in Florida for another two weeks for my friend Mesha's wedding.
I'm excited about so many parts of this trip. The first week we are driving up to Greenville to do a book signing for my husband and we will be seeing the city that Toby and Gracie were born in. Greenville will bring back so many memories for me. Good ones and bad. So for the next few posts I'll probably be talking some of those memories.
There are parts of this trip that I know will be hard also. Hard for me as a mom and also hard for us as a family.
The hardest part for me is comparing. My best friend Larie lived in Greenville and was pregnant at the same time I was in Greenville and pregnant with Toby. We both ended up with little boys within 2 months of each other. The last time I saw her and Johnny together was two years ago at Susie's wedding. The boys were one and I remember being so thankful that Johnny wasn't an early walker. I guess what didnt come into my mind at that time of thankfulness was the fact that HE WOULD indeed be a walker. That there would come a day when we would take this trip (again for a wedding) and there would be Johnny walking and Toby not. I know that it will be hard to not compare. I know everyone mom has a problem with comparing their family situation or their kids with others. I want to enjoy this trip and not spend the time wishing for Johnny's legs on Toby's body. I don't want to be over dramatic and for you to picture me sitting in the corner in the fetal position crying and unable to enjoy myself. Trust me I will enjoy myself. This is my home and these are the people who understand more than anyone in the world. But there will be those times when the hurt will almost knock you over and the problem is that it can come on so suddenly. I know there are so many who understand this sudden pain I am talking about. It's the kind you cant just sit there and explain or cry because it's usually when no one is aware of it. I know Larie understands because of her desire for another child and her multiple miscarriages, I know Jamie understands because of her little girl's cancer and I know there are plenty more I am not mentioning. This pain usually happens when you aren't planning on it or thinking about it or discussing it. It just happens.
I remember leaving a park after what I thought would be a perfectly normal playdate. I knew Toby couldn't walk, I knew he wouldn't be able to play on the playground, but yet there I was leaving the playground crying my eyes out because all of a sudden the pain seemed unbearable at the moment. I think that's one of the hard things about the day to day life. You never know when the pain is going to hit and knock the air right out of you.

When Toby was in the NICU a mom whose son was grown, but who had Spina Bifida had come to talk to me. She told me, "You will cry." I thought she meant that I would cry during hospital stays, during therapy visits or doctor's appointments. I didnt understand then that she meant, You will cry and cry and cry and cry and not plan on crying but cry again. That you will cry after playgroups, you will cry after vacations and you will cry at any given moment when a new thought hits you or maybe the same old thought over and over again.

I think the only thing that I have come to realize this trip is that it's okay. It's okay to cry and it's okay to let people know I'm crying. It does not mean that I wish for another child. It does not mean that I love Toby less. It does not even mean that I would change things if I could. It doesn't even mean that I don't love Johnny or want to be around him.

This life with Toby, Gracie and Milo is certainly a journey. I know that this trip there will be trials, there will be heartache, but there will also be (and more importantly be) happiness, triumphs and of course a wedding!!

So instead of dreading this trip, like maybe I would have done. I go, with yes some fear, but with the realization that God is going to give me the grace to handle those sad moments and the tears that go along with them. I thank God so much that I can have a personal relationship with Him.

Try something new

2009-10-02T12:45:00.000-07:00

Let me challenge all you parents who have a child with special needs to do something in the next few days. Look for something your child cant experience that a "normal" child would be able too. I know it seems heartless, but find something that you might not realize your child isnt able to do. Then fix it. Even if just for a few moments make it where your child can experience it. Get creative and work around the disability. As you can probably tell from the picture I realized that my son Toby never got to look out windows like the rest of the children his age get to do. So we fixed it and I set him up with his braces to do just that. He loved it and it was one of those little triumphs in our lives to watch him experience something new. If we dont look for opportunities like that those opportunities will be lost. Even things that might not seem to matter. Like turning around and watching the toliet flush or watching a roll of toliet paper unwind. (I dont know why I have the bathroom on my mind) Maybe it's just sitting on a skate board or sitting on the countertop helping cook. I think it's easy to over look these things because we try to focus on what our child can do not on what our child cant do, but then we miss out on the opportunites to help them do something that they can do with a little creativity. I will look at this picture and always remember the day that he stood and looked out the window for the first time. I'd love to hear of any thing that you came up with for your child.

Spina Bifida Awareness Month

2009-10-02T12:12:00.000-07:00

October is Spina Bifida Awareness Month.
My son Toby has Spina Bifida, myelomeningocele L3 - L4. Toby is three years old, uses a wheelchair, crawls around the house, and is beginning to use a walker with the help of leg braces.

This article was taken from Kidshealth.com Sometimes the easiest way to understand things like this is when it's written to children. I think adults get too caught up in using big medical terms.

What Is Spina Bifida?
Someone born with spina bifida has an opening in the spine. A healthy spine is closed to protect the spinal cord, a bundle of nerves that sends messages back and forth between your brain and the rest of your body. The messages tell your muscles to move so you can kick a soccer ball or pick up a pencil. The messages also tell you about sensations on your skin, so you know to pull your hand away from a hot pot.

When a baby is growing inside its mother, the spine and spinal cord are developing. But sometimes part of the spinal cord and spine don't grow the way they should, leaving an opening where the spinal cord may protrude outside the body. When this happens, a baby is born with spina bifida, a term that means "split or open spine."

Because of the opening in the spine, the nerves of the spinal cord may be damaged. A spinal cord that's damaged may not be able to do the important job of getting messages to and from the brain. Usually when your brain says "kick the ball," the nerves of your spinal cord carry that message that tells your leg to kick.

These messages may not be able to get through if a person has spina bifida. The person may not be able to move their muscles the way other people do. This is called paralysis (say: puh-ra-luh-sis), which means a person can't move some muscles or to feel things on some parts of the body.

Noah

2009-09-30T19:51:00.000-07:00

Today I was reading about Noah. I have heard this story again and again. I have even told this story again and again, but today it struck a chord.
Today was a lonely day when it comes to coping with Toby's care. Today felt like one of those "in the boat by myself kind of days." Today was one of those days when I wanted to sit on top of my house and scream out a long list of things I deal with day in and day out. I wasnt wanting to scream in the angry sort of way, but in the please can someone understand this. I am not just talking about the trials and the hard times, but even the triumphs, sometimes especially the triumphs. There are aspects of Toby's care that I don't share with others because Toby will not always be three and I want him to one day choose what he wants to share with people. Even in writing this blog there will be parts of Toby's life that will be a closed book, parts of his life that will be left for him alone. There are those days that making the choice to not share it all can seem incredibly lonely. Not because people don't want to care or might not know what to say, but because people can not know what to say or how to care because they truly do not understand.
Well, back to Noah. I was struck today but the fact that the task God gave him must have been at times a lonely one. In 100 years he did not have one person say "hey, I understand what youre going through. I know youve got to be tired of building and working." He did not have one convert in those 100 years, but he kept going. He kept at the task. I would imagine in those 100 years he wanted to stand on his rooftop and scream at everyone that it wasnt the easiest job in the world to be building an ark and to have no one not just not understand but to not even believe you. Wow! Now that's lonely. Im sure he would have been happy to have someone come along side him and just understand his job. When I say, 'understand' I dont mean a pat on the back, I mean truly just understand how hard the task is sometimes. Or even understand when he got a lot accomplished and had a wonderful day. I know if I had been Noah I would have wanted to give up in the first year, not to mention the 50th or the 99th. I think sometimes we over look the incredible faith and stamina Noah must have had because we are so focused on what happened after he built the ark.
I was encouraged by Noah continuing on for a hundred years doing the task that God had set before him. It's a simple as that. Noah didnt need recognition and someone to understand his frustrations, trials or even the triumphs of his day to day life of building the ark. He needed the grace of God and the power of God.
I am praying today that I will be like Noah. I pray that people will not look at my life and say, Wow, look how great Kari's doing, but will instead say, look how powerful God is in Kari's life.
2 Corinthians 4:7

Bring the Rain

2009-09-29T12:15:00.000-07:00

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

Mercy Me

Hospital Gowns

2009-09-28T12:34:00.000-07:00

The first month of Toby's life was spent in the NICU of Greenville Memorial hospital. It was one of the scariest months of my life. We dealt with multiple surgeries and times when we thought we would get to go home only to be dissapointed again. It was also a very lonely time in my life. There were plenty of times I would drive to the hospital to nurse Toby only to be told that he had just been fed a bottle. Those moments were lonely and frustrating.
Moving to texas one month after getting out of the NICU we ended up with multiple trips to the pediatric ER at Christus Santa Rosa. Every time I would sit in those tiny ER rooms looking at my little baby boy with the ugliest purple hospital gown barely hanging on him. It was miserable.
When I picture kids in the hosptial it's hard for me not to picture my miserable little baby boy in a purple hospital gown with obnoxious teddy bears all over it.
Recently, Jamie (one of the women who truly helped me through all those ER visits with Toby)found out that her little baby Charli (6 months old) had a cancerous brain tumor. This beautiful little girl will undergo numerous trips to the hospital during which she will endure six months of chemo. Jamie is one those mom's whose children seem to always look perfect. When my children are going around with stained up shirts and clothes that don't match she had her children looking adorable in matching shirts and cute khaki shorts. Charli has been the same in the first 6 months of her life. The cutest clothes you could possibly imagine with a matching little ribbon stuck on her head! Not overboard like some mom's, but just always looking cute and put together. Well, all I could picture was Charli in an ugly hospital gown just like Toby. So that's when my ideas stared coming. She needed somthing cute, something pretty she could wear during her days of chemo, but also something practical. So I did what I do. I started sewing. I made her two cute little hospital gowns. One bright green and happy and one khaki with little flowers on it. I sent them off today and hope that they work out well.
Then I started thinking even more. How much I would have loved to take a cute hospital gown with me for Toby in the first few months. Then the wheels really started turning. Was there a way to get hospital gowns out to families who could really use the encouragement? Was there a way to include the gospel with these little packages? I dont know how to start something like this, but man would I love to. I know that in those lonely moments sitting next to Toby it would have been an ongoing reminder that someone was caring and wanting to help in some small way.

That's what I want to do. Help in some small way.

If any of you that read this have any ideas or suggestions. I'd love to hear them.

The things we say

2009-09-26T11:55:00.000-07:00

The weird things I say on a regular basis
If you don’t wheel yourself over here right now im gonna….

Don’t you stomp your hands at me…..

You take those brakes off right now young man

Watch out for their feet

Don’t run over your sister

Watch where your legs are

Big pushes, not little pushes

Don't run over your friend

The incredible things I get to say on a regular basis
You can do it

You’re so strong

Just two more steps

Keep on going, almost there

I’m so proud of you

You did awesome

I know you’re tired, but you can do it

Mommy’s right here

I’ll help you if you need it, but you don’t need it

I promise to catch you

Look, I’m right behind you

Look how fast you’re going

You did it, baby!!

From a Friend

2009-09-25T07:42:00.000-07:00

I have a child with special needs?

When my friend, Kari, asked me to write something for her blog, which was created to be a ministry for moms of children with special needs, I really had to pray about what to write because I do not really see my three year old Matthew as disabled.

Yes, he has been diagnosed with spastic diplegia cerebral palsy, wears braces all day, walks with a reverse Kaye walker, receives occupational, speech, and physical therapy twice a week, and gets botox injections every three months in his legs. He has seen more specialists than this article will allow space. He spent two months in the NICU before he could come home, and has had surgery (achilles tendon lengthening) on his legs. He still needs his wheelchair for any long distances like trips to the zoo and we have a handicap placard for the van. So, to the naked eye, at first glance, yes, we have a disabled son.

But look just a little longer, and you will see his smile. And then you will hear his laugh.

And that image of the disabled child melts away. At least it does for me, because when I hear him laughing five minutes after receiving painful botox injections, or playing tag with his six year old sister while in heavy casts after surgery, which he had to wear for a month, I am reminded that I am blessed to have a DAILY encounter with God's grace and love.

Matthew struggles with feeding himself with a spoon/fork. It is not easy for him to get into a chair by himself. By the time he sits down at the table with the other kids, they are ready to get up and move on to the next thing. When the kids are playing tag, Matthew can participate but may bump the other kids with his walker. Some kids understand, and others do not want to play anymore. Through all of these things, he has a remarkable spirit. When he prays at night, he thanks God for his walker and his wheelchair. He just keeps going....and so will I...

But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible. Matthew 19:26

Faith is to believe what you do not yet see, the reward for this faith is to see what you believe. Saint Augustine

By: Monica

2009-09-24T12:46:00.000-07:00

This is my husband and Toby.

Celebrity Status

2009-09-22T19:30:00.000-07:00

When the world first hears of your child's special needs you reach a new status in today's society. I have found that especially in today's churches you reach what my husband and I like to refer to as celebrity status. Everyone wants to talk to you, hug you, pray with you and for you. Your fridge is bursting at the seams with meals and you cant walk two steps in the church sanctuary without getting at least a half dozen hugs. Now don't get me wrong. I believe strongly that God shows us immeasurable grace through those moments. He gives us strength by allowing there to be no doubt of His love and our church familiy's love surronding us. You can conquer anything in those moments, during those constant reminders of support, love and encouragement.

Then it happens. Your status changes. You are no longer the celebrity.

The dust settles and people move on with their lives.

However...
God is still good. God is still soverign. God's grace is still sufficeint.

The thing I have recently come to realize is that it is not because people do not care. Your status may change. There may be more pressing prayer requests on people's hearts, but I believe the responsiblity lies with the parent of the child with special needs. Assuming no one thought of my day to day struggles I stopped talking about them. Assuming that no one wanted to know about the last time I cried or wanted to give up I stopped sharing those moments. It wasnt until I finally had enough nerve to tell my best friend that I had felt forgotten that the light was shed on what had truly happened.

I had stopped talking. I had stopped sharing. I had closed the windows, drawn the shades and nailed the blinds down.

I was missing out on the hugs, on the prayers and on the gentle questions of how I was doing because I had stopped talking. I was missing out on the grace that God intended me to have THROUGH my life as I raise Toby. I assumed when Toby was a baby and we weere past the monthly ER visits and ICU stays that the hard part was over.I believed that now I was at the part that I was going to handle on my own.

Looking back I understand that the dramatic moments, such as rushing to the hospital, isnt the hardest part of a child with special needs. The hardest part is the day to day living. The moments you don't want to drag the wheelchair out of the car one more time or strap on a brace to a little boy asking you to stop. I also understand now that God did not intend to just a help me through the first few months of Toby's life He intended to see me through to the very end.

God is still good. God is still soverign. God's grace is still suffiecient.

Even in those daily moments, if not especially in those moments. God's grace does not leave us after the hospital stays and hard therapy sessions. God's grace might be more evident in those moments, but He doesn't change.

We might not be celebrities any more. We might assume that no one is asking because no one is caring. But maybe, just maybe we've stopped talking, stopped sharing and nailed those blinds shut. Let me challenge you with being willing to open yourself up and share those moments of heartache and trials. Give your family and friends a chance to hug you, pray with you and even fill your fridge if need be.

The Reason

2009-09-22T14:03:00.000-07:00

We all have our stories. We all have our trials. This is not just about Toby. It's not about braces, wheelchairs, therapy and doctor's visits. This is about bringing God glory in our everyday life and in our children's lives. Yes, our lives can be filled with pain but also with a hope that other parents will never experience. Praise God for the hope in the midst of the pain. I started this blog after talking to a couple of friends about the honesty we need in our Christian lives, especially in regards to trials. We want our pain to be private. I especially would much rather "fake it" than to open the shades on the windows of my heart. Well, with this blog I hope to not only open the shades, but open the windows and the doors of my hear--all with the goal of sharing God's grace.

Psalm 73:26
My flesh and my heart faileth but God is the strength of my heart and my portion forever.