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.