Elevator speech to a close friend

Coming up on a month after Dylan's passing, I find myself having a hard time determining which of my endless bank of emotions to tap into for this blog.  Each of them will have their day, I am pretty sure.  But, I do find an ease in communicating about Dylan in emails with long-distance friends, close colleagues, and the like who send their condolences.  I think I have an easier time expressing myself freely, without self-editing, in these emails than when I am blogging.  I don't worry about being unoriginal, boring, or just plain being a downer.  So, this week, I thought I would leverage that ease and post a recent response to a friend. 

With regard to the post title, I find that the cadre of tidbits I share with others about Dylan's life have started to form sort of a standard delivery, which is another way of saying that I am repeatedly eulogizing Dylan, I guess.  Perhaps they are the aspects I'm most proud of and eager to share, as his mother and chief caretaker.  They are indeed the most joyful ones.  Either way, they are sincere and, I suppose, what would come from my mouth naturally now if I were asked about Dylan on an (extended) elevator ride, which seems much nicer than to call it a eulogy. 

Dear Friend,

I truly appreciate your caring words. I'm sorry you had to hear such sad news--but I guess I can't really shield anyone from it. Given that many children with SMA don't even make it to two years, we feel like our story is much happier than many others we've heard. We had two wonderful years and 18 days (albeit the last days were mostly spent in the hospital), and although we had to watch him decline in movement, feeding and breathing ability, we did not focus on that from day to day--at least not in the last few months. Last December, he went into the hospital for pneumonia, and the doctors thought we would lose him then, but he proved them all wrong. With some non-invasive respiratory help (via bipap respirator) mostly at night and during naps, he was able to thrive for 10 more months--and it was at that point last year that we really learned to celebrate his every day and what he could do, rather than fret over his condition and "limited prognosis," as the doctors would call it.

You are so sweet to say that he was lucky. I don't know sometimes if I did enough. I tried my best, along with my husband, Colin, and the grandmas, to focus on loving him, giving him all the support he needed to stay safe and comfortable, and giving him nice experiences. He got to go to the beach two times, and he floated in the pool a lot. We took him for walks and used a hammock indoors and out. He got to watch more cartoons than most parents permit, and he ruled the iPad (with our help). He had to endure watching us make silly fools of ourselves just to make him smile, but he seemed to tolerate that alright. He watched anything with monkeys and made high-pitched, gleeful noises, even after he lost the ability to form words. He was an utter joy, and I believe that now he is without bounds--which eases the pain somewhat.

Okay, so I've gone on and on, as I tend to do when it comes to Dylan.  Thank you again for your kind words.  It's not the choice of words that provides comfort, but that you chose to send them at all. Take good care, and have a wonderful holdiay season with your family.

 

Best wishes,

 

Teri, Jason, Colin and angel Dylan, forever 2   

Road Trip

The three of us watch the sun set over Interstate Highway 35 as we eat dinner, sitting on the tailgate of our truck. We all have chicken strips with fries and gravy.  My seven-year-old son, Colin, who  hasn't eaten anything substantial since breakfast, tears into a gigantic piece of breaded chicken and asks me to sit by him. I hoist myself up and give him a squeeze around the shoulders.

To anyone passing by, I imagine we appear to be a content family of three on a road trip--perhaps on vacation, or just using the extra hour garnered from the end of Daylight Saving Time to take a whimsical drive to the infamous Buc-ees mega gas station in New Braunfels, Texas. A gigantic, lighted, smiling beaver looms over us, the red and yellow of the logo casting an odd shade as we eat our deep-fried goodness.

They would never guess that we were missing one, a family member who was tragically torn from our fold just four days before.  It was Halloween when we had to day goodbye to the littlest, the least able, our two-year-old son, Dylan.  He had been in the hospital the better part of October--including on his birthday--struggling to breathe, continually stabilizing and then crashing, then finally showing us in the least uncertain of terms that he was dying of respiratory failure due to his Spinal Muscular Atrophy. 

That day I had gone from the hospital to home and back, as my husband and I had done for several days that month, switching between meeting Dylan's and Colin's needs.  This time, I left to go Trick-or-Treating with Colin so that this day would mean something to him other than Dylan's going to Heaven. We knew it was going to happen that night. Colin knew as well. But still, he was eager to go, and he wanted me to take him.  He dutifully and happily filled his tub with candy within the space of an hour, with me under a cloud of agony and worry that I wouldn't make it back in time. 

My husband stayed to caress and whisper to Dylan, and texted me when he became concerned about the time.  But I made it--left the one to go be with the other, one last time.  I caressed Dylan and whispered how much I loved him, and that we'd miss him, and that he was getting a new, perfect body.  After he died, they asked if I wanted to bathe him, which I did. They asked us if we knew which funeral home to send him to, which we didn't.  Our doctor and nurse practitioner joined us to comfort us.  And then, after staying forever in the room, we had to leave him that night, for the last time--the only time.  

That day, that split between the tragedy that was happening and the normalcy that we wanted to cling to, was the culmination of two years of navigating feverishly between the needs of well child and sick child, able one and never-would-be-able one.  This was the last time we had to divide and conquer, the last time we had to secure a nurse or a grandmother to care for Dylan if we wanted to take Colin somewhere, or split up to get ourselves and Colin to church, or stop reading with Colin to start Dylan's evening feed. We could just get up and go now. 

And we did.  We tried to take solace in this newfound ease of doing.  We tried to take heart that Dylan was watching us on the road from Heaven, healed. 

But the ache of his absence followed us up the highway and into the darkness of evening, and cast a shadow more disturbing than the light of the Buc-ee sign.

My Sincerest Apologies, To My Kids, for the Mundane

Today I stayed at work until 4:30--2 1/2 hours after I am supposed to leave--then had to make my way through rush hour traffic from downtown to the outskirts of the city, where I live.  I picked up Colin by 5:30, went home, gave him his "down time" with the iPad, said hello to Dylan (who was waking up from a too-long nap) and his nurse, Rhonda, a red-haired woman with Betty Boop scrubs and a high-pitched voice who loves on him three times a week. 

After heating up leftovers and feeding Colin and me, I set Dylan up to feed, gave Colin a treat of rainbow sherbet, and looked over Colin's math homework.  This was going to be a long one, especially with Jason out of town.

Getting Colin to focus on math after a long day is painful for both of us.  I tried to make up a game out of three-number addition (as in adding three one-digit numbers) using his hippy-hop, in lieu of actually having a hint of how it is being taught in class.  Besides, modern pedagogy is girl-centric, I keep hearing--boys need activity.  After the hippy-hop experiment failed (hard to keep track of bounces when you're also counting up from a number), I simply leveled with Colin.  "We're just going to have to figure these out, one by one.  And you need to focus. We can use pennies if you want.  And we'll take two-minute breaks at the end of every row." 

I knew he was pained by this exercise.  But, he sat down and worked through them with me.  Sometimes we used fingers, sometimes pennies--I even let him draw circles if he had wanted to.  He was so happy to be able to choose his method (something that seems to be discouraged in school) that he focused well and worked through them more quickly than I anticipated.  After he got into the groove, he even recalled several two-number sums without counting, which got us to the final adding step more quickly--and that made us both jubilant.  We finished over half the worksheet tonight.  Tomorrow's a long day with an early start.

All this time, my Dilly is watching TV and making happy noises.  He gets the short end of the stick, with regard to attention, when we have to do homework into the evening.  He suffers when our schedules get too busy.  But he just smiles big, babbles and spits raspberries, and loves our every touch--even if it's just on a break between rows of math problems. 

I am supposed to be parttime at work still, but my commitment has had to expand out of sheer necessity; my department is in survival mode nowadays.  But, I realize that many people do this every day after their full time jobs--with two or more fully functional kids or even kids with special needs--and with spouses who travel.  And they survive.  I wish I knew their secrets.  Giving up sleep, perhaps? 

But Dilly's time is precious--more so than most of ours--and quality time with Colin, devoid of school pressures or hounding to get through shower and teethbrushing, is precious. And both are fleeting, each in their own way. 

Please, God, let there be more time tomorrow for something other than the mundane.

  

Happy Mother's Day

It was a very Happy Mother's Day, indeed. 

Last year, Mother's Day fell two days after Dylan was diagosed.  Jason and I went to a new church upon the advice of a friend--we had not ruminated about it, researched it, wondered whether it was the "perfect" church, or any of our usual behaviors.  We just went.  We realized that, in light of our situation, we needed to go somewhere and get down on our knees.  Much like people who struggle with addiction and other demons, we had to admit that we were powerless over this situation--we could not change it through any works, plans, or money.  This was not a typical response for us, who were apt to overthink religion, spirituality and, well, almost everything.  But our pain called for atypical measures.

That day in church, so many people whom we'd never met before spoke directly to our trauma throughout the service.  The pastor spoke about mothers who faced terrible, heartbreaking grief and pain over their children, for whom this holiday was not a happy one. He told us to fight for our children, no matter what the circumstance. Even the music minister invited all to the altar who may be "in crisis."  I don't know that I had ever heard priests or pastors minister so openly during a church service--especially on this day.  A typical Mother's Day service in churches of my past either focused on Jesus' mother, Mary, or they involved folksy jokes about gender stereotypes (women like to shop, men don't, hahaha) or platitudes about how mothers have the hardest job (they do) and advice to the dads to give them a day off (they should).

But no, this church service was not fooling around.  At the end, we left in tears. 

And Sunday, one year later, I marveled as we drove to this same church, which we kept attending since that Mother's Day in 2011.  On that day, we had no idea whether Dylan would still be with us for Mother's Day 2012.  But here he is, with us today!  He is stable, he has everything he needs to help him breathe and eat, and people to help us care for him so we can take care of Colin, work, keep our family financially solvent.  He has drugs from a previous SMA clinical trial to help him retain as much muscle movement as possible.  He has his special stroller made just for him, and his little yellow doggy, and daddy's whiskers to tickle his feet, and mommy's leg stretches and smothering kisses.  He has his iPad games and willing family members to prop his forearms up to help him touch the screen.

I still left church in tears on this Mother's Day.  The pastor gave an equally stirring service about the tribulations and sorrows of two different mothers in the Bible--which seemed, yet again, to speak directly to us. 

The difference between last year and this, though, was that I did not worry about whether Dylan would be with us next Mother's Day. I simply basked in my greatest gift--the delight of seeing God's grace embodied in Dylan's beautiful face, smiling at me yet another day.

One Year Later

I can't believe it has been a whole year. One year. It was one year ago today when we learned you had Spinal Muscular Atrophy.

One year ago when a neurologist whom we'd never met before tested your little legs, your muscles and your nerves. When he was done, he gently but nervously told you how good you were for him. Then he turned to us and revealed the suspicions he had had since I first took you there four days before, but he couldn't yet confirm. He gravely told us that your motor neurons would eventually die because they are missing a protein necessary for their survival. He told us that we would need a pulmonologist. He told us to go see a research doctor in Dallas. He told us to enjoy you for as long as we could. None of these things seemed to string together, to make sense to us, in our state of sheer pain and grief.

One year ago tonight, after you were asleep, we sat on our patio and cried until our faces were stinging, chapped, sore. I smoked cigarettes until my lungs ached from smoke breathed in through heavy sobs.

We got a pulmonologist. We saw the research doctor, who had virtually nothing to offer. We signed up for physical therapy and occupational therapy. In September, we had a g-tube placed in your stomach to feed you when you became too weak to swallow safely. In December, we were lucky enough to watch survive a 2 1/2 week hospital visit for aspiration pneumonia. After that we were able to justify to insurance your need for a bipap ventilator to help your weakened breathing muscles, as well as other respiratory aids and nursing support.

We now have everything we need to help you overcome a cold, allergies, or anything else that is within our control. We now have help for you from home nurses. We know exactly what is supposed to happen as this disease progresses. It all strings together now, and in some fashion, it makes sense. We will never unlearn the things we have learned to do to care for you--the feeding bag and pump, the cough machine, the suctioning of your nasal secretions to keep you from choking.

What we have to do means nothing, because one year later, all that matters is that we still get to see your sweet, smiling face. We get to talk to you, hear the associations you make and the little words you say, help you with an iPad game, position you, swing you, bathe you, and move your limbs. We get to come up with new experiences for you, like the beach or the zoo. We get to watch Pocoyo with you, and relish your beautiful face in its utter delight. We get to make you as happy as possible, every day.

We are blessed beyond our wildest expectations.

The Hierarchy of Horrible Decisions

In December, a little cough of Dylan's sent us to the hospital for what turned out to be a 2 1/2-week trip, complete with lung collapse, intubation, having "the talk" with doctors, having "the talk" with Colin, and then watching Dylan fight his way back off the tube to come home with us on December 22.  It was at once gut-wrenching and exquisite.  So when I returned to this blog and found this draft, which I originally started in November, I realized that it wasn't meant to be finished until now, after making the decision to help Dylan's now-weaker breathing with non-invasive bipap ventilation and daily respiratory therapies.      

The word "decisions" has taken on a new meaning for us. 

As we all do, Jason & I make literally hundreds of decisions every day, every week.  What to cook for dinner...which phone calls can be made today or wait until tomorrow...how to handle a coworker or client who is unhappy...whether to enroll Colin in Taekwondo...what to watch on the DVR before we go to bed. 

On the larger decisions, we are masters at the process. It's almost a pasttime, really. We noodle, discuss, research, state our cases, and ruminate until we come to a well-planned, logical decision, then execute. Even with the fun stuff.  We relish in wondering, Should we rent a house in Flagstaff next Christmas so that Colin can see snow?  How soon should we get the travel trailer?  When we retire, should we stay in San Antonio and buy a condo in King William or move somehwere else?  How old should Colin be before we take him to Europe?  Jason & I each have our wild, dream-filled inspirations and our periods of more rut-driven cynicism, sometimes counter to each other in this sort of dance of balance--one bringing the other down to reality when ideas get too out of control (i.e. expensive or risky), and at times inspiring the other to think bigger. 

Lately, though, the word elicits anxiety.  I have heard it at almost every doctor's appointment from specialists who manage different sub-specialties of his care.  The standard line is: "As Dylan progresses through the 'disease process,' you will be faced with a number of decisions you need to be thinking about now, so you can be prepared."  What they mean is, as his body grows and demands more of this protein, this lifeline to muscle development--the one produced by a gene that is so tragically missing from his body--he will become weaker and need more assistive devices, largely respiratory, to stay alive. 

And while the next typical line, "There is no right or wrong answer," is supposed to be comforting, it isn't.  Because everyone has in their minds a theoretic sense of the right answer.  I did, before I had a child with SMA.  If someone had told me my story two years ago, I would think I knew the exact answer.

After overdosing on "research," i.e., reading dozens of blogs by SMA parents about their kids' journey with SMA, and talking to a few SMA moms, all I did was sink into depression.  There is no way to be prepared.  Because, simply put, these decisions just crush your bones, compress your heart with excruciating pain, water-board you. 

And they're terribly controversial.  And no matter what you decide, you will be judged, and you will have periods of regret for not going another way, and you will wonder for the rest of your life if the outcome would be different had you chosen Door #2.  For every person who believes that any respiratory assistance (which ranges from non-invasive ventilation with a nose mask to full-on tracheostomy) is prolonging life against God's wishes, you will find another who believes that if you aren't using every single medical tool or procedure available to keep your child alive, then you are doing them a disservice by not hoping enough for a cure, not praying enough, advocating enough for their life. 

And then a slew of us are somewhere in the middle.

Some decisions are, oddly, universally agreed on.  We made one of these early on--to feed him through a tube because his swallowing muscles became too weak.  I have never read a case where someone decided to "let nature take its course" when it came to feeding by g-tube. On some primordial level, we mostly agree that letting a child starve is inhumane.  I don't get why I got it, but I got it.  It also buys you time with them, which I think is what really drives the decision.  After that decision, which is often the first to make with SMA, the waters of humane versus inhumane are murky at best.

In December, we brought Dylan home with a bipap ventilator to help him have strong breaths, while he can still initiate them.  By strong, I mean that he takes in enough oxygen and blows out enough carbon dioxide, which is what SMA kids can't do by themselves at some point.  We also give him respiratory therapies every day to help his lungs stay open. We hope that these things will help him for a long time, but realize that it's actually not up to us.

So here's what we did decide: We are not going to waste time doing anything that doesn't give Dylan comfort and pleasure, doesn't keep him safe, doesn't help us connect with him. We will also let Dylan show us what he can do or no longer can do, when he's happy to be here and when it is too hard on him. 

So far, his bright eyes, babbling and big smiles show us how happy he is to be here.  And we are grateful for every day of it.