Monday, July 25, 2011

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.


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. : )

Sunday, May 8, 2011

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!

Tuesday, January 18, 2011

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.
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.
She bought him a shirt the color of the team.
She gives him stars for his shirt just like the other players.

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!