Wheelchair For A Day!!

     You know when something is constantly on your mind, you have to get it out there, so to speak.  Getting it out there can be talking about it, writing about it...whatever, however.  As long as it is o-u-t!  I made another Facebook post about the fact that Kerstin is at school, in an already snugly fit wheelchair, yet there is no another way for her to sit that is supportive.  

Very similar to Kerstin's chair!

     The beanbag she used for years before moving on to middle school is now flattened.  We were told by the special ed coordinator that "if it was purchased with special education funds, it can be used by any student".  Kerstin being the only user of that beanbag was NOT a problem until I went to the newspaper on the horrible accessible issues at the school.  Never-mind the fact that Kerstin and one other child were the only ones in wheelchairs.  He wasn't in attendance much this past school year.  Nonetheless, I was able to borrow a Tumble Form chair from CRS.  Kerstin used that chair until she went home on medical leave, prior to her spinal fusion.   

    After surgery, Kerstin had extra inches and pounds on her and quickly outgrew the borrowed chair!!  We've been seeking funding and sources for a chair that is big enough for her now.  It's coming soon, like the newly ordered wheelchair, they take a little time.  

     The back-story came to say once again...if these school leaders were in or had to be in wheelchair all the time...how would they handle things?  No other seating option.  No way to get out of the chair unless she is being changed!  NO, Kerstin will NOT be in attendance for the entire school day without another way to sit!  You know once I said that, letters are needed!  I already saw that one coming!  

Therapy/changing table.  Can't sit here unsupported!

     Kerstin's ortho specialist said something that I will not forget.  At her appointment last month when we were talking about school and seating, he said "It seems like so many people in our schools have lost all common sense."  That was powerful!  I haven't been seeing much common sense lately.  The people within her school system that seem to have it are often treated badly, and please don't form a decorum with Kerstin's mom.  Some have questioned how one could be nice to me after my going to the media.  Makes me laugh!  

     "Wheelchair For A Day!"  I would be willing to do the leg work to find chairs for a day.  Would the superintendent, special education coordinator, all central office administrators, and every board member be willing participants in "Wheelchair For A Day?  Our friends in the media will also be invited!

Inclusion!  That means,  YOU try a Wheelchair For A Day.  Share your experiences!

If Kerstin could...

Yeah, I'm in another one of those slumps of "what if?" or "If Kerstin could..."  Sometimes I hate these moments, and at other times, I'm hopeful.  Hopeful, because there's always a possibility, faith is like that!  Faith gives you courage.  Faith lets you know, that your "what ifs" can be possible.

Lately, I've been thinking, if Kerstin could talk, I know this little girl would be as sassy as they come, she's that already.

If Kerstin could talk, walk, sit on her own, dress herself, do the things other children do, I would not have to go to school with her everyday.  I wouldn't have to worry so much because, if something went wrong, anywhere, she could tell me!  If she could dress herself, it would not take us so long to leave the house and we wouldn't have to start hours before its time for us to leave.

If Kerstin could feed herself, there would be no need for the g-tube, the Kangaroo pump for continuous overnight feedings, all the boxes of Mic-Key sets, the bolus syringes, the feeding bags or Pedisure that has taken over a corner of our kitchen.

If Kerstin could walk, I would not have to load and unload a 59 pound wheelchair everyday, then lift her in and out of our vehicle.

If Kerstin could sit on her own, there would be no need for a car seat, she could even ride in the front seat with me.  I still may do that, once I've consulted her therapist and see if the car seat can be installed in the front passenger seat!

I could go on and on...but, there's no need to.  We are living the life we were intended to.  We are in the postition that we need to be in for this time.

If all of these things were reversed and Kerstin was another child... I would not be the person I am today.  I would not have found this voice to speak up when things are not right for children and adults with disabilities.  I would not have found the voice to be the advocate that I am.

If Kerstin had been another child...I would be silent and things would not have taken place the way they have.

I like to sing (or try) along  to these lyrics to Kerstin, she knows it and I have to always remember these words myself...

"When I see your face

There's not a thing that I would change

'Cause you're amazing

Just the way you are

And when you smile

The whole world stops and stares for a while

'Cause girl, you're amazing

Just the way you are..."

~Bruno Mars

 She is...Kerstin is amazing, just the way she is!

*After the Super Bowl last night, I knew I had to add this song, if you could have seen her smile...*