Feelings

I started to post a quick status update on Facebook but decided to jump over here instead.  I just finished with an administrative hearing with the state of Michigan.  We ordered a stroller type wheelchair for Keyan back in April of 2012.  I will not bore you with the details of why we ordered what we did but just know that we spent several months choosing the right one for her and were guided by the experts at Mary Free Bed Rehab hospital.  The State approved the chair but denied the recline option.  Again, I will not go into all the justification for the recline, but just know that it is NECESSARY!!!

You must know first of all that even getting the hearing was a struggle.  The hearing was originally scheduled for the end of November and the day before it was to be held, the state called and cancelled it.  They then rescheduled it for today.  Never mind that Keyan needs the dumb chair and their delays are preventing that.  Secondly, I received an 85 page document yesterday afternoon that the state was submitting into evidence….nice that I had time to deal with and understand that!  Lastly, you need to understand that this feature is a relatively inexpensive feature of the chair.  I can guarantee that the man-hours that went into preparing for this hearing could well have paid for her chair to recline.

The hearing began at nine this morning and I  was instructed that the state would speak first, I could ask questions, I would than be sworn in and could testify.  The lady that spoke on behalf of the state than proceeded to talk for 46 minutes.  It was unbelievable.  At the 46 minute mark, the judge interrupted her and told her that our time was winding down.  This was a shock to me.  I had no idea that the hearing had a time limit.  She wrapped it up, I was sworn in and began to testify fully understanding at this point that the judge needed to get on with his day.  I quickly summarized my belief as to why the recline was needed and than the state got the last word.  I was so frustrated.  I suppose with more legal training I would have thought to ask for an adjournment so that we could complete the hearing fairly but, unfortunately, I have not had the opportunity to go to law school.  Anyway, the judge told us he would issue his decision in writing next week and that was the end of it.

Here is what I know. I know that no parent should have to bear witness to their precious child being reduced to a policy or a bullet point in a document.  It was heartbreaking to have to beg for a simple thing to make Keyan more comfortable.  I know that requesting the hearing and fighting the denial was absolutely the right thing to do but I so wish that I had just figured out a way to pay for the recline option and not be subjected to the humiliating and dehumanizing hearing.  I know that we need the state’s assistance in caring for Keyan and that I will continue to fight to give her the best day.  But I sure did hate listening to someone fit her into a box.  She is so much more than that.  I know that no parent in their right mind wants to order a damn stupid wheelchair for their child, let alone fight like hell to get one.  I know that we are diligent in pursing all sorts of funding avenues to get what we need for Keyan, and it is exhausting.  We are not wasteful, we would love for Keyan not to need recline.  I know that this whole thing is ridiculous.  I challenge that nurse that made this decision to begin with to come out from behind her desk and live my life…no actually, I challenge her to live Keyan’s.  To be told what should be comfortable, to be told what isn’t necessary, to be told that meeting your basic need of happiness is not cost effective.  I challenge her to be as brave as my dear child.  To be as strong and carry around an additional quarter of her own weight on her back if she wants to try and walk.  I challenge her to have the gull to look my daughter in her eyes and tell her she doesn’t deserve to relax when she is exhausted.  I know our government system is overwrought with scams and users.  To the state of Michigan…we are not one of those cases.  See my girl for who she is.  See how she wants to live life to the fullest and than I dare you to deny her that.