Back at Square One

Well, Drew’s cast has since been removed and here’s hoping that Drew will no longer require a cast.  I’m sure the technician suffered some percentage of hearing loss amidst the shrill saw and the even shriller screaming from the panicked Drew.  Drew has a new scar to his collection.  The incision from his July surgery is about 4-5 inches long and will be yet another story to tell one day.

Even though the cast has been removed, Drew is still recuperating from the surgery.  Having bared no weight on his legs in 2 months has taken its toll.  His knees are weaker, almost buckling under his weight.  The new apparatus in each knee (8-plate on the end of each femur) has made each knee a little more sensitive to pain than in the past.  Having not used his legs for walking or therapy for so long has impacted his ability to walk and he’s lost a lot of that precious range of motion that he so painfully acquired through months of physical therapy.

Ugh….that last sentence kills me.  We spend months working on stretches and exercises to improve range of motion and we seem to always encounter some trial that sets Drew back.  It’s like taking two steps forward and then TWO steps back.  After removing the fixator from Drew’s right leg back in 2012, we spent the following months working hard on that leg and after three months, after a ton of work, his leg was fractured requiring surgery and a cast and then we had to start aaaaaaaaaall over.  Then, we experienced a delay in insurance coverage for physical therapy so the lack of therapy led to some decreased progress (although I admit responsibility in not taking the initiative to continue the therapy on our own at home and I have nothing but excuses of being overwhelmed with motherhood that in the end will NOT justify it.)  We finally start to recuperate from the loss only to have another unexpected surgery dumped upon us AGAIN wiping out the progress won over the previous few months.

It feels like it is an endless process of torture.  To have to push so hard emotionally and physically and finally feel like you’ve made some great accomplishments, finally being within sight of the finish line, only to be knocked down continuously, one after the other….it’s maddening.  It’s exhausting. It’s left us all frustrated and overwhelmed.

Drew took his first steps in September 2013 and since he’s been the most independent he’s ever been, walking from room to room to be with us, walking at school, and actively participating in activities once too hard for him. Walking just makes things easier.  You will never understand how the “simple” act of walking can be such a treasured ability until you have to adjust your whole life to a child who is unable to do so.  So, having Drew walking just made our home happier than it already was.

But, that was yanked away from us and we’ve returned to the dependency of the power wheelchair, constant needs that he’s unable to satisfy himself.  It’s almost more painful this time with Drew not walking.  Prior to summer 2012, Drew didn’t walk and although we still had to make adjustments, we made it work and it didn’t seem too painful to us at the time.  But, since having Drew walk after surgeries, now that he’s returned to his once “disabled” self, it’s more emotionally taxing.  I was spoiled with his newly gained independence after learning to walk.  I long for the days that he was walking.

I look at pictures or video of Drew walking and it’s surreal to see it. It’s like I’m looking into the lives of another family.  It wasn’t that long ago, but it’s even more astounding now to see him walk.  I do take pleasure in the thought that I will witness not just one glorious moment of the first steps but two.

Being so anxious to get Drew back on his feet, we started encouraging Drew to attempt to walk in his gait trainer once we saw that his lingering pain had subsided.  Well, that didn’t go well at all.  It’s not that Drew didn’t try, but it was emotionally taxing for all of us to see how far back Drew had regressed and seeing how weak his once strong legs had become.  Seeing him buckle under the physical exertion was emotional.  It was as if the months and months of misery and hell just flashed before our eyes.  The physical discomfort and pain Drew expressed was difficult.  Having to scold Drew for being defiant and generally unwilling to push himself only to have to remind myself that he’s six years old and I have NO idea what pain he’s going through was too much to handle.  Daddy and I have spent months – years actually, 2.5 years – motivating him, encouraging him, asking him to bear the pain and push past it and it all came crashing down on me the other night.  I didn’t want to give up.  I wanted to be strong for Drew, but I could see that Drew was not in a place to handle this much.  So, after holding back an almost uncontrollable urge to cry as I fought back tears as I read him his bedtime story before bed that night, we’ve decided to take a step back from walking until Drew has regained some strength in his legs.

Starting now, I can only hope that Drew can once again recover from this grueling process.  It sucks having to start all over and a small part of me fears that some of Drew’s strength and will have been compromised by the incessant obstacles put before him.  I wonder how much one little 6-year old can withstand before giving up.  After all that he’s been through and the challenges he’s faced, only to have obstacle after obstacle get in his way, I worry that we’re asking too much from Drew.  We have all reached a point during trials where we just throw in the towel and say, “I’m done.”  And, with each new trial put before us, I always wonder if this will be that one push over that ledge.  But, I will continue to try to remain strong for him and be his cheerleader as long as we can.  I love Drew either way and it’s not that I won’t love him if he doesn’t walk.  Daddy and I will always be by his side rooting him on, walking or not.

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