Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, August 6, 2014

Knee Pads

Meagan's gait trainer was returned last week. Between Mrs. M, Brian, and myself, we decided it was best as we were seeing no improvement and continued misery, which in the big picture, was not ok with any of us.  When Meagan's PT then told us she had another child who could use the trainer and had tested well on one already with no fighting, we decided with all the factors we had already been contemplating, it was best to return it to the PT and let the child who would actually benefit from it have a shot.

As people found this out, we got a lot of "oh no!" or "aw, that's too bad"..etc especially following our last post of hopefulness that the gait trainer would work out.  None of the comments were malicious in any way...they were all very well meaning.  But they were definitely comments of projected disappointment.  I think when things like this happen, sometimes people not in our shoes don't understand that a setback can really occur at any time, and be permanent, or be temporary.  Sure... we were hoping that Meagan could get over being strapped in the trainer and realize she could finally move with her feet..independently! But it was just not meant to be at this time.  We are still working with Meagan on weight bearing by holding her and letting her stand by the couch, or tap her feet on the floor.  While she doesn't get as much of a "workout" this way as she would being fully on her own weight in the trainer, it is at least getting her upright time to time and she is at least having fun with it.

This occurrence, plus some conversations with fellow special needs moms this last week about some setbacks they have also been having with their children really brought to light how much of a rocky journey this road really is.  Speaking personally about brain issues, it's all part of it.  The brain is an amazing thing, but also an unpredictable thing.  So sometimes it works wonders of progression, and sometimes we have a bump in the road that was either not foreseen, or that comes out of nowhere. Sometimes, it seems there a lack of awareness of the actual process by which brain kids accomplish new things.  And that's understandable.. I know before Meagan, I was not as aware as I am now (although I was admittedly more aware than most typical parents, as I had been around my mom's school students long enough to realize some parts of the special needs journey).
Having 4 older 'typical' children, I can completely understand this mindset.  Thinking back to my other daughters' development, although they each developed at their own pace and quite differently, there was at least a general theme that held true.  Once they started to accomplish something, that was it - accomplishments kept coming. Better, faster, and on to new things.  As soon as my oldest mastered supported sitting, she was sitting on her own within days.  As soon as my second born could pull up on the couch, walking was not too far behind.  As soon as ...... and you get the trend.  This is common for most parents.  The child will hint at a milestone, dabble in it, accomplish it, and then master it.  I think this is why it's hard to grasp how a special needs child just simply doesn't move forward on to the next logical step.. or even harder to grasp is when a child is on the path to accomplishment but simply just stops doing what they already knew how for no apparent reason.

Having a special needs child is certainly a long road. Heck, being a parent at all is tough! I knew this when I "signed up" for this journey and would often visualize a never ending road as a way to prepare myself. I would think of it when we would drive across flatter lands like Texas or Central Ohio and I would look down the high way....how it almost seemed to touch the sky and the end of the road was not visible to the eye at all.  While this image has held true to a point, I realize now after many experiences of the unexpected setbacks it has been a false picture.  Instead, now I think of it as the hiking path on the mountain near our home.  A lot of climbing. No end in sight. And a lot of rocks and roots along the way that cause us to stumble, trip, and even fall at times.  But like on any good hike, we finally make it to a "scenic view" stop where you can see for miles.  Beautiful trees, scenery, and best of all, a breath of fresh air and a pause in the trail. For a little while, we can rest. And just take it all in.

To my other special needs moms out there who are struggling at the moment or facing a setback, hang in there.  The hike isn't easy, and it's especially hard when things happen without explanation.  We have to do so much that is "out of the ordinary" and be such "mama bears" all the time, that when things come out of the blue, it throws us off even more.  It sucks - there is just no other way to say it.  But know that there are lots of us on the hike with you.  When you are struggling or hit a rut in the trail, we are right there.  The falls hurt, but that's just part of it all, so keep on going.  Because there is absolutely no better advocate for your child than you.  And although the rocks hurt, those scenic views are so worth it.  You and I both know that's why we keep allowing ourselves to fall...because throwing on some knee pads and continuing on the trail is the only way we can reach that next beautiful stop to let our kids shine... and reach the potential they deserve.


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