Her Wheels...My Shoes...

     

   There's a saying that goes something like you don't know about a person's life until you've had the opportunity to walk a mile in their shoes.  Basically, until you have had to go through what the next person has gone through, you don't have a complete understanding of what they deal with each day.  This is especially true  when it comes to understanding what a family is dealing with when they are raising a child with special needs.  Oftentimes, when raising a child with a disability, things don't happen as easily or as quickly as they usually would.  Nor do they happen as others traditionally think that they should happen.

     I've seen post after post on blogs and articles where parents of children with disabilities wanting people to understand them.  Just because they have a child with special needs doesn't mean that they want a life where they don't have the constant worry about their child(ren).  This life, of raising a child with special needs does require dedication and a tough skin.  There is also a facade that shows extreme strength.  Underneath it all, we need someone to listen to us, to be there and just to understand.

     Her wheels...my shoes...you can't understand what we have to go through unless you've done it.  I can guarantee you that most families raising children with special needs don't want others to sympathize or feel sorry for them.  We truly want understanding, and a little compassion!  




     When we're a little behind for an appointment, school or other things, know that it is not intentional!  Think about our situation.  It is not one of those that I can say to Kerstin, go get your shoes, your clothes, or get dressed, eat your food, brush your teach...take your meds.  I have to do all of that for her!  Then, I have to do them for myself.  Let's also add in the factor of a sometimes spastic child. Dressing is little more difficult.  

     When the journey is understood, it means more than you even realize.  Take a stroll in her tracks and a walk in my shoes!  Tell us about your journey...

More to come...

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...*