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...*

The week did not end on a good note...

So, we've decided to keep therapy days on Friday's, that will give the princess a chance to rest and regroup.  Not going back to school the next morning sleepy and groggy from the exhaustion of school and therapy the day before.

This past Friday, she also had a weight check before therapy...get there and she has LOST about 10 ounces :(  So not what I wanted to or needed to hear!!  I was distraught and thinking what can I do ( suggestion are greatly appreciated ) to get my daughter to gain weight and maintain it!  I was told by one of therapists that added coconut oil to her foods ( pediasure ) would help to add extra calories.  I've got to get a food processor and make her purees myself!  I just feel so helpless and not sure where to start and what to do...giving up is NOT an option though!!

We're going to make it happen and get through this too.

More to come...