Before I begin with the true purpose of this post, let me give you an update. Our trip to Florida went well. Drew loved the plane rides and both boys were well-behaved and delightful little travelers. Though we didn’t get to spend much time there, we did find a few hours to go to our favorite beach on Singer Island. We enjoyed the ocean and the sun. The appointment went well. We get to make small changes in the wear of Drew’s braces, but nothing really huge came out of the appointment, which is a good thing. Overall, Dr. Paley was happy with Drew’s progress and we’ll see him again in six month.
Prepare yourself for more complaining and pessimism. I really made a mistake a few posts ago venting frustrations about adopting a negative outlook because I can’t seem to get myself out of this funk. I’m so frustrated and exhausted. What an annoying roller coaster ride of emotions: pain and exhaustion followed by glee and pride at each new accomplishment followed by more pain and exhaustion and throw in some despair and frustration.
Please forgive me for yet another whiny post, but the end of all of this work still seems so far away. Drew has been experiencing a lot of pain recently which mostly presents itself during the night causing him to wake up screaming and in tears. This, of course, disrupts my sleep as I try to comfort him and give him doses of pain medicine when needed. He’s had a couple of nights of peace, but most nights he has one or more episodes. Drew actually had at least six episodes on two nights really wearing my patience thin. And, if it isn’t physical pain that’s waking him up at night, it’s his night terrors (there is a marked difference between a night terror and pain so the two can’t be confused.) After so many nights of uninterrupted sleep and an inconsolable Drew, I actually yelled at Drew last night. I was angry that he had woken up screaming. I was unable to fix what was wrong and his non-stop screaming made me so frustrated that I condoned his behavior and stormed out. I feel terrible about it. Here’s Drew in pain and instead of comforting him, I berate him and leave.
It makes me so frustrated that I can’t make the pain go away. I makes me so angry that he can’t get a restful night of sleep. I’m upset that his life is marred with so much pain and agony. I just want him to be comfortable and happy. I know that he’s making progress, but life was so much easier before these surgeries. Yes, I know that life will be even easier once we are done with all of Drew’s therapies, but at this rate, it just doesn’t seem like this will ever end. I long for the days that I could easily carry Drew around from store to store with no effort and no heavy gait trainer to unfold and setup (or unload a wheelchair.) I miss the days that Drew could quickly and effortlessly “booty scoot” from room to room in the house without relying on me to carry him back and forth or yell across the house to find out what he wants to drink. I remember having such a good time jumping on the trampoline with Drew, playing with him outside on his little truck. None of these memories involve pain, or limitations, or exhaustion.
Now, his pain has become such a problem that we may have to decrease the amount of physical therapy he gets each day or week which means that that it will take even longer to be done with it. It’s not that I want Drew to be in pain and push him past his limits just so I can be done with all of my own exhaustion, it’s that every time I have to listen to Drew cry in pain during his knee stretches, I want to throw my fist into a wall. I hate, HATE, that he has to endure so much. It makes me so angry. I feel like we are torturing him and his cries have become so much that sometimes I just want to quit. I just want to give up. Just take the braces off, throw them away and say, “$%^& it.” A part of me wishes we had never gone through any of this. Life might have been so much easier if we had just accepted our child is disabled. I mean, are we superficial because we wanted to improve our son? Why couldn’t we have just been happy the way that he was? We wanted to change him and now look at what we’ve done. His legs are scarred for life. Who knows what type of resentment he’ll have for us having ruined his childhood with these surgeries and therapies, preventing him from having a somewhat normal childhood. He won’t grow up being nostalgic for the old school playground or navigating the neighborhood streets. He’ll grow up trying to forget his childhood.
With all of that being said, he’s probably handling this better than I am. Sure he complains during therapy, but after it’s over it’s like it didn’t happen and he’s back to his normal self (other than during the night.) And, I have to admit that life is much easier now that he’s walking in a gait trainer. I don’t know what I would do if he wasn’t mobile, requiring me to carry him AND Holden, or having to go through the arduous process of unloading the wheelchair anytime we went somewhere. When he’s scooting around in his gait trainer at the store and I’m carrying Holden in one arm, I think, “Wow. This wouldn’t be possible if Drew wasn’t walking.”
Still, I’m so over the daily therapy that seems that will never end. Every time Drew goofs off during therapy or we have to allow a break so he can recuperate, I hear little tick marks of another therapy session being added to our life. He’s had so many therapy sessions that his stack of appointment cards, which list therapy sessions for an entire week, are more than an inch thick when stacked together. And, his nightly pain….I hope with every fiber of my being that it’s not a permanent presence. But, when he’s in that amount of pain, every second feels like an eternity (for him, more so I ‘m sure.).
And, don’t even get me started on his braces again. My back throbs at the mere thought of being hunched over strapping/unstrapping, locking, buckling, etc. each leg one at a time. And, Drew doesn’t make it easy with his evasive maneuvers trying to avoid them. We have an appointment in Louisville next week with an orthotist just to connect with someone who can perform maintenance on his braces when needed. I spend quite a bit of time dreaming about our upcoming consult with the orthotist. My dream goes a little like this:
After examining Drew’s legs and medical needs, he tells us about a new breakthrough in pediatric orthotics. He whips out these braces unlike any we’ve ever seen before. They are lightweight, even lighter than a feather and very compact, seemingly impossible to fit the entire leg. But, futuristic materials make it possible for these braces, no larger than a deck of cards to fit a leg with the invention of a new proprietary technology. He demonstrates placing them on Drew’s legs. He simply holds the braces in the palm of his hand and says, “Braces on.” and the braces hover off of his hand and is drawn by a force to Drew’s legs as if it has a life of its own. The braces automatically position themselves on Drew’s legs. Much to our surprise, the braces are invisible to the naked eye. The orthotist demonstrates the benefits of the braces by showing us how easily Drew’s pants can be pulled over top of them, without catching on them as they do his other bulky, less advanced, braces making pants removal for bathroom breaks seamless and convenient. To remove the braces, the orthotist simply mutters, “braces off” and without a sound, the braces remove themselves and return to their compact state, automatically placing itself in a corner for safe keeping. The best part is, placement and removal of the braces takes no longer than three seconds and can be done from anywhere in the house thanks to wifi. They’ve already gotten a pair approved by insurance for Drew and, in fact, have a set ready for Drew so we can take them home right away.
Ok. Nobody never said that I wasn’t a dreamer. But, this could happen, right?