Summing it all up in a big long way, three days in the making

I had my final meeting with the program director and we are coming upon the last day of the program.  I am sad to see it go.  I had so much hope and anticipation for this summer, as I do for every summer, and the flip of the calendar page to August always fills me with a heavy heart.  I had hoped that somehow the four or so weeks here would change everything.  Anyone who has ever known the power of summer camp knows that four weeks of summer can equal so many months of non-summer.  But, unlike love in the Pocono mountains, four weeks cannot really change cerebral palsy.

Was it a success?  Was it worth all the planning and expense? Was it worth the strain I think it put on Hun to manage the house and Sophie without me?  In all truthfulness, I am just not sure.  There were some parts of this trip that were just for me and the rest of it was all for Max.

Did four weeks away finally ease some stress so that I might return to my old self?  Yes and yes, for the most part.  I needed to get away like no one else. I couldn’t schedule another minute of my regular life.  I needed a break,  I got it and I do feel better.  I was also looking to find some kindred spirits and I really think I did.  I have some new and wonderful friends.

The rest of it was all for Max.  Did we get what we came for?  Actually, the answer is no. We did not get what we came for, but we still got…

1.  I came thinking Max would be cured and I am sorry to say, he wasn’t.  I am brave enough to admit I still wake up sometimes thinking he will be cured and it will all be over… But, come on,  I know the rest of you do the very same thing.

2.  I hoped that walking, walking and more walking would mean…walking.  Does Max walk any better after 180 hours of therapy?  Not really.  Can he walk any better than he does at this moment in time. The answer is really no.  There does not seem to be any type or amount of therapy available in the world that will get him over this hump.

3.  I wanted an answer to the perpetual equipment quest… I wanted THE perfect walker, canes. braces, shoes or invention that has not yet been invented.  The answer is that there is no perfect thing for him.  He needs all of them.  We are still unwillingly attached  to two walkers, three sets of canes, an adapted stroller, several pairs of hands and what seems like a different pair of shoes for every day of the week. All of them have a purpose and it appears as though we will not be lightening the load one bit. I have also come to face the wheelchair question once again.  It is the albatross around our necks.  I am steadfast in my determination to keep Max out of a wheelchair.  I don’t say that out of any disrespect for the beautiful and capable kids we have been with this last month because many of them have their own combinations of walkers, canes, scooters and power chairs. Despite my firm belief that he stay out of a wheelchair, the truth is that without something we are limited in our activities.  Just today, one of Max’s classmates, perhaps the most challenged but well-travelled of them all, remarked with horror at the lack of places we have been as family.  He chided me saying that “you guys don’t get out much do you?”  I have come to admit that we don’t often venture past the golden gates of Metuchen, New Jersey  because it is just too damn hard.  I want that to change.  I really mean it. I vow to leave Metuchen (at least once in a while.)

4.  Can Max do so much more for himself than he does already?  Yes, and no. He is not hiding some miraculous ability to do stuff for himself but just refusing to do it. He could dress himself more often and do some tasks around the house but I know the only reason he doesn’t is because we don’t make him. Fine motor tasks are harder for him than they should be so we really do need to focus more on all of them.

5. For once and for all, do those  quirky and inexplicable mood swings, confusing behaviors and lack of attention have anything to do with his CP or am I just failing at some grand parenting technique? I am selfishly happy to report that I can in fact blame the CP for some of it.  Of course, CP doesn’t cause him to desire every single item available for purchase nor can I blame it for his inability to leave Sophie alone, but there is an undeniable similarity in the kids I have come to know this month.  These similarities are evident in their universally funny to the core spirits but also in what I see as an organic impatience that must come from deep within the workings of  brain injury.

I need to complete this post so that I can have some peace of mind to move back into our normal family life.  We will be beginning our journey back home but vacationing a bit on the way. I am determined to extend the adventure.  Can going back to Metuchen count as my first attempt to leave Metuchen?

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This entry was posted in Cerebral Palsy, Conductive Education, Disabled Children, Parenting. Bookmark the permalink.

4 Responses to Summing it all up in a big long way, three days in the making

  1. Anonymous says:

    I am so proud to know you and Max and the whole Rubin family.

  2. maladroitmum says:

    Dear Sheri,
    This was hard to read. I cried. I thought of my friend Hannah. She’s 18 and has cerebral palsy (she is my facebook friend – you can probably see her from my page) and when she turned 13 or 14 or so the doctor suggested she get an operation to cut some tendons in her legs to stop them from twisting so they’d sit easier in her wheelchair. At that very moment, for the first time in her life, she recognized that there was no hope that she would ever walk. I remember her stepmother telling me how heartbroken she was- I mean she must have known it, but to make it so final was just too much and it was painful and horrible for a doctor to finally admit what everyone probably knew already.

    In elementary school she had a full time aide who took care of her at school. In junior high that changed. Her family procured her a power chair because she needed to be more independent and she could get around by herself in a power chair. Since then, Hannah’s grown and developed. She graduated from high school from the uber gifted program this past May. Not just the regular gifted program, but the super duper honors one. This is a child who cannot really write – she dictates all her work. She went to Europe for her graduation present. With her parents, but still – she got to go and see Europe. She also got a full scholarship to University of Washington. Her parents don’t really want her to go -they are afraid that she cannot manage – how will she manage the bathroom and getting around campus and everything it takes to live at college, but she IS going.

    Hannah is going to college in her power chair, all by herself, on a full scholarship.

    i think if you asked her about her power chair, she’d probably tell you it gives her incredible independence and freedom. She’d never be able to go to europe or University of Washington without it.

    Max should go to Europe AND the University of Washington . Although, Hannah really wanted to go to Princeton!! Seriously.

    Hugs to you AND Max
    Beth Fleischer

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