In Our Stride

I’m relieved to report that we have hit our stride in this surgery process.  Pain is no longer as intense.  Drew only requires pain medicine twice a day.  I give one dose about 30 minutes prior to bedtime just as a preemptive strike to avoid pain throughout the night, because a good solid night of uninterrupted sleep is just as important for me as it is him.  And, then he usually requests pain medicine sometime in the morning as we start our day which has been effective throughout the day.

Moving him around has become equally easier thanks to the lower pain level.  I can move him easily from the couch to the wheelchair.  Well, “easily” is a relative term, it still nearly breaks MY back but at least I’m doing it without causing HIM any distress.  Trips to the bathroom aren’t as nerve-wracking as before, though I do use a portable urinal to bring to him to eliminate extra heavy lifting in interest of not having my own hernia surgery before the end of the summer.  Thought the urinal has been its own source of stress when you have an overly-curious 3-year old who MUST. TOUCH. EVERYTHING.

13432310_1120154348023020_8781904140600114818_nSo, this has been a relief since I’ve been on my own here in Florida now for about a week.  Daddy flew back to Kentucky the day after Drew’s 2nd surgery to take care of some household chores (refinishing wooden floor, minor house work, etc. followed by his long-awaited return to work after his short-term disability as a result of his hernia surgery in early May).  Yaya (Mother-in-law) had flown down from Kentucky to be next to us right before Drew’s second surgery and she stayed a week after Daddy left to fill in the gap, but she, too, had responsibilities back at home so she flew back a little less than a week ago.  But, not before we took advantage of being so close to the “vacation capital of the USA” of Orlando and spent the day at the Kennedy Space Center.

So, it’s just been me and the boys for the last five days.  I’m not going to lie: I was a little anxious about the unfamiliar challenges of Drew’s new restrictions and increased dependence.  But thankfully Yaya was present for the most difficult and trying period of the always-present pain.  I mean, she probably didn’t jump for joy, though I’m sure she was glad to help.  But, now that Drew’s pain is minor, daily life is pretty much routine.

Maybe too much routine.  We’ve all been battling a bad case of “stir crazy”.  Drew’s pain may be minor and I can “easily” move him around, but his new limitations still play a factor in what we can and can’t do throughout the day.  For example, a simple chore like grocery shopping.  Unfortunately and naturally because this is how my life goes, Drew’s power wheelchair went kaput shortly before our trip to Florida and as life would have it, it couldn’t be repaired in time so Drew only has a manual wheelchair.  Not really that big of a deal unless YOU HAVE SHORT ARMS AND CAN’T WHEEL YOURSELF AROUND.  Which, I don’t mind to push him myself, but then there is this added stress of a now 3-year old who is overly curious and not enough stuck-by-my-side.  Also, how exactly do I push a shopping cart, push a manual wheelchair all while ensuring Hurricane Holden doesn’t wreak havoc on the reachable shelves or get kidnapped because he’s so dang cute?  So, grocery shopping trips are few and far between when I can have a nice new neighbor friend sit with Drew in the condo while I run full speed through the store so I can return quickly so as to minimize said neighbor’s inconvenience at my expense.

At home, one of our favorite things to do is to just go outside.  It never fails that some neighborhood friends are out playing and will no doubt combine keeping Drew entertained while I follow Holden around.  But, we don’t know anybody here and, again, he’s bound to a manual wheelchair that he himself can’t operate alone whereas at home he was walking and at the very least had a power wheelchair that he could independently operate.  Pushing Drew around in the wheelchair isn’t feasible as Holden is a runner and runs aimlessly around and I fear that letting go of Drew to catch or redirect Holden will send Drew bouncing down a hill or a curb.  So, we no longer go outside to change surroundings.  And, poor Holden, going outside to wander around is his favorite thing to do so he’s constantly dragging me to the door and whispering, “O ow-shi?” It’s not like I can leave Drew in the condo all by himself, who needs me to tend to bathroom needs, while I wander around with Holden.   But, I think I’ve come up with a solution so I called Daddy at home and now two walkie-talkies are boxed up and on their way to me as I type this!

It’s easy to see how disabilities can affect the afflicted person, but it’s not so easy to guess how it might affect other people around them.  This is also evident in the fact that instead of balloons, an elaborate theme and decorations, and excited guests, Holden’s 3rd birthday “party” consisted of 3-4 haphazardly wrapped birthday presents and….well, that it…he just opened presents and then we moved on without so much as a birthday song.

So, we’ve just been in the same four rooms and the same white walls for seemingly a long time, which is disheartening because it’s only been five days and we’re already stir crazy.  We’re just watching movies, fetching toys, eating meals, bathroom breaks, baths and showers, and repeat.  It’s gotten so monotonous, lonely and claustrophobic that Monday, when I took my truck into the local Dodge dealership to have the air conditioner serviced, we waited nearly six hours in the lobby, but you know what?  I wasn’t annoyed.  I found the change of scenery refreshing.  And, there were other adults there.  Someone to have intellectual conversations with.  Even though I didn’t talk to a single soul because Holden kept me occupied, but at least they were there!  Each day, I look forward to going to check the mail and take out the trash because I actually get to see the sun, feel the breeze.

Luckily, two weeks had finally passed since Drew’s last surgery thus Drew was finally allowed to be submerged in water so we immediately got lathered up and all of us went to the pool.  Both Drew and I had been counting down the days until we could finally visit the pool once again.  I was excited to go, obviously from my aforementioned boredom, but I was anticipating how complicated it was going to be with Drew having limited mobility.  But, the one thing that really scared me, even more so than being in the pool with two boys who were dependent on me for their survival in water, was the walk TO the pool. Let me explain:

So, I may have mentioned before that my first-born son, Brennan, died from chromosomal defects when he was 38 days old.  His death obviously had a huge impact, so much so that I still feel it today.   I have an irrational fear of losing Drew or Holden.  Call it PTSD, I guess.  And, though it’s not irrational to worry about the safety of your offspring, I call it irrational because I have obsessive and uncontrollable and arguably completely outrageous will-probably-never-happen thoughts of all of the ways that I might lose them.  I remember for MONTHS after Drew was born, I had an overwhelming fear that he would die: SIDS, a freak accident, a stranger in the middle of the night.  I recall once, during a short visit to the hospital about an infection, I was absolutely convinced that the hospital was conspiring to remove Drew from my custody because his hands were smelly due to them being clenched because of his limb disorder.  I mean, I didn’t just have the normal thoughts of a loving mother who fears all of the things that could bring harm to their child.  I would liken my panic and feeling in my chest pretty much all day as if someone was actually holding a gun against Drew’s head.  My heart would race anytime he was out of my sight.   It hasn’t been so bad with Holden now that more time has passed, but I still find myself having irrational thoughts about them being ripped out of my hands.

For instance, the walk TO the pool.  Between our condo and the pool, there is a pond.  Alongside the pond is a short, steep embankment and then a sidewalk that we traverse on the way to the pool.  As I lay in bed thinking about the next day’s events, I see ourselves walking along this sidewalk.  Holden knows the way to the pool because he and I have walked along this sidewalk on several occasions (while Daddy or Yaya was here and stayed with Drew.)  I imagined Holden at my side following us happily when suddenly he jets off in a different direction.  I let go of Drew’s wheelchair in order to stop Holden and Drew’s wheelchair starts to glide on a slight decline towards the pond.  There is so little space between the embankment and the sidewalk that Drew’s wheelchair quickly dumps Drew down into the pond and the wheelchair tumbles in immediately after on top of him.    I jump in to retrieve him, though he’s no doubt already drowned and broken every bone in his body from being in this pond for all of three seconds it took me to get to him, but an alligator snatches him right out of my hands and he’s gone.  This is what I envision in my head and though it’s just played out in my head, my heart starts to race and I debate not going to the pool.  I become so anxious and upset, that I can’t sleep.  I can’t stop envisioning Drew going over the edge of the embankment.

Scenario two is we’re walking along said sidewalk and out pops an alligator and snatches up an unsuspecting Holden and pulls him under.  We are in Florida after all and I heard a rumor that this very thing happened to a guy’s dog at that very pond.  AND there is a trending story on the news of a 2-year old child being drug into a lake by an alligator so this scenario isn’t that out of the realm of possible.

My chest aches with anxiety.  I shake my head violently to get the thoughts out of my head.  I chew the tips of my fingers as I obsessively replay the scenarios in my head, complete with how I would react in that situation.  It usually is me immediately going into shock, unresponsive and non-functional, waking up in a hospital a week later because they had to put me in a medically induced coma in order to calm me down.

So, on our short trek to the pool, we walk on the opposite side of the street where there is no sidewalk, with me pushing Drew in his wheelchair on Holden’s left side, between him and the sidewalk, so as to block him from running the 25+ feet to the pond.

But, we all made it untouched to the pool (of course), thankfully!  I, after some careful planning, got both boys into the pool and Drew was so relieved to FINALLY be able to be submerged in water.  It was a little sketchy for a while because Drew’s legs are “extra floaty” according to him so his legs would try to swing out from underneath him causing him to get off-balance and flip belly down.  So, I had to stay within arm’s reach at all times and had to rescue him multiple times when he was unable to right himself.  You’d be amazed how difficult it is to do the simplest of things when you’ve lost the majority of function in your legs, specifically being unable to bend them.  Apparently, you lose access to certain muscle groups when they’re straight so Drew struggled with a few simple maneuvers that would have otherwise been easy had he been able to bend them.  He had to remain seated on one of the top two steps the whole time as he’s not allowed to bear any weight on his legs so entering deeper water was out of the question.  But, none-the-less, it was nice to get out and spend time together in the pool.

So, now we’re just in a holding pattern until Drew’s next surgery.  He has to have the rods in each leg for six more weeks (total of 8 on the left since it was done first and required longer correction) at which point they’ll be removed.  We had plans of coming back to Kentucky shortly after the 2nd surgery (to put the rod in the other leg), but Dr. Paley asked us to be here two weeks prior to the 3rd surgery (to remove the rods) for a consult at a local orthotics place.  After looking at the calendar, we realized that we’d only be home for two weeks so our trip mid-way was scrapped and we opted to just stay in Florida the whole summer.  Only, Drew’s 3rd surgery was scheduled two weeks later than anticipated because Dr. Paley is out-of-town the majority of July so turns out we would have been able to come home after all!  But, we had already committed to extending the contract on the condo and other commitments so, oh well!

Daddy is planning on coming back a few days before Drew’s 3rd surgery.  And then, the real fun begins: physical therapy five times a week for six weeks. Drew is quite sensitive to pain, unable to tolerate much or at any at all or bear with pretty much any discomfort, and is extremely headstrong and can be combative when he’s under stress so I really believe this period will be quite the nightmare.  I anticipate a significant amount of drama and vodka.  Given Drew’s new surgery schedule, looks like we’ll be here until the second week of September and that’s only if things go as planned.  Nathan’s mom asked me the other day, “So, since first meeting with Dr. Paley and hearing how this process would work over time, has it gone pretty much as he described it?”  My answer was a resounding, “um…No.”  It all worked out like he said it would, but this process has had many surprises, good and bad, so I’ve learned to be flexible and anticipate change 🙂



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