The Chair

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

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!

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....

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!!!!

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

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

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!!