T minus 7 days (including today) until Drew’s surgery in Florida. Our 1000+ mile road trip is looming in our very near future. With each day’s passing, my anxiety is becoming more and more prominent. Within days of this event that we’ve been anticipating for over a year, I find myself clouded with doubt, sadness, apathy, anxiety and everything in between.
Last night, and the three to four consecutive nights before, I comforted Drew as he tried to endure pain in his right knee. For nearly a week, Drew has complained of incessant pain in his right knee rendering him inconsolable at night as he lay down to sleep. He has these episodes of nightly pain for a few weeks and then the pain desists for weeks or months. It’s a cycle and looks like the painful nights have begun once again. Are they growing pains? Are they spasms? I’m not sure, but as I gave Drew his max dose of pain medicine, massaged his knee and held him close as he whimpered into my shoulder, it occurred to me what’s to come.
My mind drifted to the days of physical therapy in Florida while Drew was undergoing his main series of correction. Daily, the therapists would assist Drew with range of motion exercises to regain flexion and strength in each leg once the fixator was removed. Of all of the exercises, the knee bend was the worst. While Drew laid on his belly, the therapist would bend his leg and apply very little force to get enough stretch all while Drew literally screamed his head off. This exercise was extremely painful and words cannot accurately describe how emotional it is to watch your beloved child endure such pain and resist so unabashedly. I would cry tears next to Drew as he begged for them to stop. But, it was all for the better and it simply must be done to have gotten him to where he is today.
I mean, physical therapy is so intense that his femur was once fractured during this very stretch. I still shudder as I can’t get the image of watching his leg give away. Obviously, the fracture wasn’t meant to happen nor is it a normal occurrence and I’m sure head rolled as the mistake was dealt with through the chain of command, but that fear still lives within me.
The thought of having to endure watching Drew experience this horrendous pain – the begging, the tears, the wanting to give up – has me with a lump in the throat. And this will be every. day. Every day I’ll have to sit next to him as he questions why, resents his life, and thinks about giving up because the pain is just too much. There were days, back in 2012/2013, that I would cry by myself at the end of the day, cry tears and make feeble attempts to contain the wave of emotions as I weakly tried to eat my dinner through gasps and outbursts, because the stress and sadness witnessing Drew battle this was getting to me. I hoped I’d never have to do it again and here we are on the cusp of repeating these awful days.
Recalling these emotions has me questioning the surgeries themselves. I mean, why are we doing this?!? Why on Earth are we putting Drew through this again? Is it really necessary? Maybe he can just make the best out of what he has now. Is it really going to be worth it? He can walk now so must we continue the correction? It seemed so miraculous that he walked after undergoing the major round of correction in 2012/2013 – there were times I wasn’t sure if THAT process was really going to work, what makes me think that we’ll acquire yet another seemingly-impossible feat of overcoming this?!? I mean, you hear miracles of a person experiencing a horrendous accident and being paralyzed and all of the cards are stacked against them and there’s no hope for this person AT ALL, but somehow this person miraculously recovers against all odds and people are like, WTF?!? But, what are the chances of that said person accomplishing that TWICE?!?
The logical part of me is trying to reassure the emotional part of me that the surgeries are necessary as there is no logical reasoning to say that Drew won’t continue losing extension in each leg one day being unable to walk due to his legs not being able to straighten and these surgeries are being done to get his legs back to straight again. But damn I wish that Drew didn’t have to go through all of this. It kills me to know that he’s going to hate life, albeit for a short period of time, but it’s just going to crush my soul to see him attempt to surrender to his disability. It makes me so sad to think of him being angry at being dealt this particular set of cards requiring him to endure such pain and inconvenience. “Why did I have to be born this way?”, he’ll question. “Why can I not just walk like everybody else with no surgery?”, he’ll ask. And, I’ll have no answer.
All of this makes it even more frustrating when people seem to perceive our experiences in Florida as some sort of vacation. It happens EVERY time. Someone will ask about Drew’s surgeries and we’ll say they’re in West Palm Beach, Florida and they get this delight in their eyes and they gleefully say, “Oh! Florida?!? That must be nice!” This happens every time someone hears for the first time that we go to Florida for Drew’s medical treatment and inside, I’m burying my face into my hands in frustration and exhaustion. No. It is NOT nice. You THINK we spend so much time at the beach, in Orlando, shopping at the designer stores, taking weekend trips to the Keys and traipsing about the big cities enjoying local cuisine and experiencing new exciting experiences. When, all we do is drive back and forth from our small hotel room to the hospital, comfort and argue with Drew during physical therapy as he tries to resist, pick up pain medicine from the pharmacies, stay cooped up in the hotel because your child is hostile and in too much pain to be drug around anywhere (because he can’t walk due to a “no weight-bearing” order from his surgeon which will last 8 WEEKS!!!), constant doctor appointments, long waits in the waiting room, x-rays, and anytime we DO go out it would mean lots of heavy lifting (of Drew who can’t bear weight), in and out of the vehicle at each stop along the way, dragging around a cumbersome manual wheelchair. Oh, don’t forget all of the expenses: now IN ADDITION to our mortgage back at home, we’re paying three times our monthly mortgage payment for our condo, twice the utilities (have to keep them active at home and now we have to pay for them at Florida too). Don’t forget the travel expense getting to and from Florida (twice) and the $250 co-pays for each of three surgeries. We’ve left family and friends. And, for those who work, they have to take a lot of time off and sometimes they have to leave their jobs completely in order to care for their child. Yes, this is all so very nice. We enjoy Florida so much while we’re there. We really look forward to it.
No. Just no. It is not anything like a vacation. It’s not a perk. I would do anything if all of these surgeries could have happened closer at home where we have an established, working routine. Sure, we’ll make a few attempts to go to the beach or some appropriate activity in order to break up the monotony and the negativity of the rest of the time spent there, but I can guarantee you that only the kids benefit from the experience while I and Daddy are just dying inside from pure exhaustion and just want to sit at “home” and take a nap. So, if you meet someone who is travelling long distances for their child’s medical care, for the love of God, please don’t act like the medical treatment is minor to their location.
We went to Cincinnati on Sunday for an appointment on Monday. Luckily, Daddy was able to stay home with Holden so to avoid the added stress of a two-year old who won’t sleep. Drew saw Dr. Cornwall who was very happy with Drew’s progress so far. He questioned briefly if we were considering doing the same on his left hand and I explained in small detail what’s coming ahead regarding Drew’s legs and said it’s probably going to be at least a year before I can even begin to think about something like that without wanting to shoot myself. Then we saw the occupational therapist who again adjusted his exercise routine and discussed goals. So, we’re going to meet with her again next month (after we return from Florida) and he’ll get to experiment with adaptive devices such as eating utensils and bathing devices that he should be able to employ now that he finally has a hand that will accommodate them. They were a struggle before because he didn’t have the “pinching” maneuver without a thumb and has largely relied on us. But, now that he has a thumb, maybe we’ll be able to find certain devices that he can use to further his independence while eating, bathing, and more! I’m really excited to see what’s to come on this front!