Friday, December 27, 2013

The Spirit of Dylan

Last year around this time, I'm sure I was terribly sad.  But I don't remember it that way.

I recall feeling a wealth, which is to say tidal waves, of gratitude.  I don't know if it was because I still felt freshly full of love and gratitude from the outpouring at Dylan's memorial on November 15.   But I do remember those two things.  Love and gratitude. 

And it wasn't just me.  The typical Christmas for us includes Jason, my mom, my mother-in-law, and Colin.  And we all seemed different. It felt as though we collectively gave ourselves a buy from all the normal holiday stressors.  Of course, we made sure to buy gifts for Colin and each other, and we had a nice dinner, and we did pretty much every tradition we were used to doing. But what didn't seem to occur was the normal tension over giving too many/too extravagant/age-appropriate/likable gifts, or saying something wrong, or the worry over the potatoes being perfect, or if the food was prepared smoothly or if the timing was messed up, leaving something cold, or burned.

We've always had nice Christmases. But last year felt like an elevated state of peacefulness and calm.  Relief that we didn't have to see Dylan suffer on another holiday.  Cognizant of how lucky we were to have had him at all.  Grateful that we had each other.  Blessed in so many ways.

The true, and often forgotten, spirit of Christmas prevailed.

But a lot happens in a year.  Time actually does erode the sharpest pangs of grief, dulling the pointy parts just enough to provide some comfort. I noticed that, after I crossed the year mark, I felt the story of Dylan being nudged, slightly, from the forefront of my own life story to perhaps a volume of a larger set, albeit a big, thick volume.

With that, I feared that we would lose that special peace that Dylan brought.  I'm talking largely about myself here.  I feared that my slow reprieve from pain and return to "normal life" would also return me to worrying about petty stressors. Was everyone getting along, happy?  Did we spend too much?  Not enough?  Did Colin get too many presents?  Why aren't my scalloped potatoes getting thicker? 

But it occurred to me this past Christmas Day that Dylan changed me, and everyone else close to him, permanently, and not just over one year.  He came to us in 2010, a dream that we never thought would happen after failed attempts at conceiving.  We almost lost him to aspiration pneumonia in 2011, then got to bring him home from the hospital two days before Christmas--and what a gift that was. In 2012 we mourned him but also breathed in the peace, love and gratitude that he left us.

Once again, the true spirit of Christmas prevailed. Thank you again, Dylan, for changing me. 

  

Friday, November 1, 2013

All Saints Day

The other day, I ran across the following passage from notes I took at a session on spiritualty held at a statewide conference for pediatric palliative care:

Caring for a child with a life-limiting illness is the closest thing to hard evidence of the existence of God and the validation that you are not in control.

Having graduated with a Journalism degree back in the days when good journalism was still the norm, I have a burning desire to attribute this passage the best that I can.  The facilitator of this session was Ryan Campbell, a chaplain for Children's Medical Center in Dallas, who had this statement on a slide. Unfortunately, I do not recall if these were his words or those of a parent of a dying child.

It doesn't matter.  Dylan did prove to me, beyond doubt, that God exists and is rich in our lives.  I'm ashamed to say that it took a child with SMA to do that.  But I see it now.  Caring for Dylan was the most exquisite thing I have ever done in my entire life, and I had to trust God implicitly to do it.  Staring into Dylan's beautiful blue eyes was witnessing God right in front of me. 

Apparently, God likes to make raspberry noises, because Dylan did them incessantly whenever he was happy.  I'll bet they're both up there doing it now. 

Thank you, little saint.








Wednesday, October 30, 2013

Disclosure

Colin still wears this shirt, occasionally, and by choice:


















It's pretty small, having been bought right before Dylan was born.  Colin was just five years and three months old.  If he lifts his lanky eight-year-old arms up while he's wearing it, you can see his belly.  It has been relegated to the play-clothes drawer, only to be worn on weekends. I started to fold it with the clean laundry the other day and started crying. 

I wanted him to be a big brother so badly, and not to a child who had to leave us so early.  The ache over this loss, Colin's loss, is still strong in my chest--something that has not really subsided over the past year.

Yet Colin's coping skills are much like Jason's and mine. At the beginning of school, on his "About me" worksheet, he wrote "no" under the question about brothers and sisters.  He also told a doctor the other day who asked if he had any siblings that he didn't have any, looking nervously over at me to see if it was okay.

It both saddened me and gave me relief that this self-preservation instinct was intact.  It's the same thing I do.  It's not worth getting into with most people. When I am asked about children, I don't always say I have one--although it's most often the easiest response. Occasionally, there's a situation that allows me to say two without having the other part of the conversation--the "where is he?" part. The other day I was in a waiting room talking to a woman with an infant who was crying.  The woman was self-conscious. We started chatting about infant things, as women often do, and it put her at ease.  Without thinking, I'd talked about giving my youngest one chamomile for an upset tummy, as well as referring to Colin's infant stories.  When the woman asked how many kids I had, I said two.  When it came to infant care, I fully deserved to lay claim to both. 

It's a treat when I can talk about Dylan without having to explain where he is.

The part that hurts me is that Colin feels inclined to hide a part of himself that he was so proud of, a title that he was so thrilled to have.  A love that was so big that now seems to have no place to go.  He is the big brother--of a brother he can no longer kiss, play with, boss around, fight with.  

I am not sure how long he will want to keep wearing the shirt.  I will always keep it for him, long after it is too small to wear.  My hope is that his pain will become smaller and smaller, like his shirt, until he can just put it away as a keepsake and touch it every once in awhile.        


Sunday, October 20, 2013

52 Sundays

Dylan's last day in our home was one year ago today.  Not by the date, but by the day. 52 Sundays have passed since he was with us at home.

I hadn't figured that out before this morning in church, and when I did, I cried--right there in church, during musical worship.  I almost walked out, I was crying so much.

52 Sundays ago, October 21, at around 6 a.m., I called the doctor on call and told him that Dylan had been struggling with keeping his sats up. (Translation: his oxygen saturation was dropping below 90 percent, continually.)  Fearing the worst, I asked if we could just try a larger dose of Lasix, a diuretic he had been taking to keep his lungs dry.  We had just come back from the hospital four days earlier after not finding a culprit for his struggling, such as a bacteria or virus, and I wanted to exhaust all my options before resorting to the PICU again. He said yes, let's try it.  He gave me a larger dose and told me to follow up with him later.

Within an hour of giving Dylan the Lasix, he was breathing beautifully, smiling, and surely eager to watch his cartoons in the living room.  We gathered around him with joy.  I can't describe adequately my happiness, my relief, to see his condition improve so vastly.  That did the trick, I thought. That is what he needed--a bigger dose.  He had been taking the previous dose for 10 months and it had never been adjusted for his larger weight.  There was my answer.  I desperately needed it to be the answer.

The birthday party that we had to postpone from the week before--Dylan's birthday party--was on.  We made ribs, had grandparents over, gave Dilly ice cream, opened presents.  My heart was so full with gratitude.  It had been Jason's birthday as well, the day before--so we all rejoiced for our oldest and youngest boys.

The next day, Dylan's struggle returned with a vengeance.  After trying everything we could at home to stabilize him. I rode with him in an ambulance downtown again--for the second time that month.  For the last time, it turned out.  It took the next nine days to figure it out, but it was his body's time to fail, which is the only guarantee you have with Spinal Muscular Atrophy.

Now, 52 Sundays later, I seem to be reliving those very steps.  The ride, the hospital stay, the stable days filled with tenuous hope, and the crashes that dashed hope. Where I would normally find a one-year anniversary kind of arbitrary intellectually, my heart and body doesn't.  I am primordially wired to dread these milestones. I feel it in my core.  And I have to brace myself now to get through to November.

     

Sunday, October 13, 2013

Happy Birthday

Today we celebrated our son, Dylan, who would have been three today. I don't know if they celebrate birthdays in Heaven. From what I understand, every day up there could be filled with balloons and firecrackers and puppies and cake. But for us, Dylan's birthday will always be a day I cherish.

Jason had the idea to have friends and family over, maybe have a short video and/or photo slides. He said he wanted to celebrate, rather than mourn. I agreed that it seemed better to focus happily on his birthdate than what would come later this month--the other date. The day that had so much trauma and fear surrounding it that the memory has permeated my body, all the way into my bones, and taken permanent residence. 

Planning a birthday celebration for your child who died is tricky. I didn't want to rememorialize him, but this wasn't just a barbeque, either. 

I wasn't going to have a cake because Dilly couldn't eat cake, but Colin said that we should have cupcakes, and I wanted him to have a vote. So, I went to the store and stood in front of an expanse of party supplies with characters Dylan liked, looking for cupcake decorations. I felt odd and slightly sad. Doing the regular kid decor thing didn't really make sense.

As we got closer to the day, the original ideas dwindled and disappeared from the agenda. No video. No special photo presentation, just the regular scroll of our photo library through the Apple TV. We decided that a balloon release would be just enough remembrance without altering the mood of the party. 

Truthfully, though, I was extremely anxious about the balloons and the tears that would invariably flow from me. I am not one to want to cry with 16 other people around. I didn't want anyone to see how much it still hurts now, nearly a year after we lost him.

I didn't have to, it turns out. 

God gave us rain. Hours worth. Complete with thunder and lightning, and spongy, oversaturated earth. Weather not suitable for balloon-releasing. I sort of smiled picturing a balloon being struck by lightning or beaten down by relentlessly large raindrops.

God gave me the perfect cupcake decorations, too--baking cups with monkeys on them, along with bananas and bright green banana leaves. Dylan's favorite animal. His favorite color. They were in my cupboard the whole time.

God triggered my tears at the perfect time--in the shower before the party. 

God gave us the perfect friends and family, too--ones who understood that our hearts needed their company in order to laugh, to be light, on a day that would otherwise make us so sad.

Monday, October 7, 2013

Broken

Promises, that is. To my sweet angel.  The promise to write something every day. It was a bit unrealistic, clearly.

These days fly by. I think many thoughts about Dylan in the space of each day, sometimes cry, sometimes just smile. According to my pastor, he is now in a state of perpetual love and bliss and, bluntly stated, couldn't give a rat's backside as to whether we down here are sad. I don't mean to sound ugly; quite the opposite, actually. I never want him to feel as though he's missing out on anything wonderful ever again. 

Here on this lowly plane, we struggle. Lately it is Colin who requires so much care into the night. Over the past year we have trialed ADHD meds, joined social skills group therapy, been told he may be on the lower end of the Austism spectrum. We've had some success with the meds, offset by a decent degree of side effects. Tonight he was coughing and stretching his neck so much--a series of motor tics--that he couldn't get to sleep until I rubbed his back and asked him to picture his favorite places. This, after we struggled with homework through bouts of anxiety and tears. From both of us.

We don't yet know the full extent of Colin's challenges. He is like an onion, with many layers of sweetness, inattentiveness, anxiety, daydreaming, monents of stunning clarity, obsessive behavior, eagerness to please, humor that comes outta nowhere, and extreme sadness over his brother. And good old-fashioned kid manipulation. I know I am a target, with the guilt I carry around about failing to provide a healthy brother. Somewhere between my dangerously-close-to-enabling (but too accurate to ignore) suspicion that we're dealing with more disorders than one, and his dad's rampant suspicion that I'm being "played" a whole lot, lies the truth. I'm convinced it's in the middle which, incidentally, is his favorite place to sit. This child is so much different--and harder--than Dylan, in a way. Because with this boy, we have an influence on the outcome.

I've heard the thought stated a few times lately that we are not raising kids, we are creating future adults--which scares the Hell outta me. I need to wrap my head around how to get my child through this massive gauntlet of potential processing or learning disabilities, ADHD, PDD, or whatever, to other other side--an adult who exploits his strengths, has developed strategies around his weaknesses, and is wildly happy. 


And for that, I remember that it's no place for the weary kind. Even though I still feel broken.

Wednesday, October 2, 2013

This Month

It occurred to me today that this month is going to rip my heart out.

It started yesterday--the first day of a month one year ago that was marked by memories of hard breathing, respiratory distress, two hospital visits, and scary days and nights at home in between. The month of final, irreversible decline. Every day that I drive downtown to work, I cry remembering those drives to the children's hospital one year earlier.

Yesterday, Colin reminded us of the void he feels.  He told God during his nightly prayer that he wishes he had another brother. As a parent, you want to do whatever it takes to remove any void, any pain in your child's heart  But how on Earth are two forty-something, sad, heartbroken, screwed-up parents supposed to seek out another child? Not that I don't think about it...

Today, Colin told me he thought about Dylan's memorial and got sad.

So that's the first two days of October. 29 more to go. 

For now, I've committed to writing something--no matter how small or poorly crafted--for every day in the last month of my littlest one's life. Seems like it's at least better than just crying.

Thursday, August 8, 2013

Twinkles

This one's for Kim...

My story--the story of my little angel Dylan, that is--is not such an unusual one, and it comes in different forms, with different kinds of loved ones. 

It so happened more than three years ago that Kim had an unexpected conception--or, rather, a delivery.  An unplanned addition to her family.  And upon receiving this sweet little bundle of joy, she learned pretty quickly about the myriad health complications that would probably, at least statistically, shorten the life of this precious surprise. 

But her little one thrived.  The power of love and proper caring really does make an amazing difference in the life of one who would merely be written off as frail, sick, or merely a runt by the onlooker.  I imagine that, after an initial period of wondering what she had gotten herself into, Kim settled into parenting her charge, bolstered by every day that her new child showed happiness, comfort and love.  Kim did not worry "how long" she had with her sweet baby.  She kissed, stroked, loved, played with, protected.  And the joy that resulted was an unexpected, and quite significant, blessing--one that lasted three years with virtually no issues.

Over the summer however, Kim's little sweetie took a turn for the worse.  She started having heart failure and trouble breathing.  Medication helped her to be comfortable for awhile longer, but her sickness ultimately made her suffer, then took its toll.  Kim had to say goodbye to her on July 29.

I could tell Kim felt sheepish about being so scared and worried during Twinkles' bouts at the animal hospital, and for being so terribly sad after Twinkles passed.  Seeing as how she was a dog and all.  

But I can't express strongly enough how much my husband and I hurt for her.  I am pretty sure we knew exactly how she felt.  It doesn't matter whether it's a child, parent, sibling or pet. When your love carries someone that you love farther in life than they were supposed to go, and you experience such incredible joy along the way, it blesses you beyond your wildest imagination.  And the experience refines you with its overwhelming swells of love and pain.

Rest In Peace, Twinkles.  Give Dylan a nudge with your cold little nose.  I hope he pets your soft fur so you both get to feel wonderful.






Tuesday, July 16, 2013

Aloha, Dilly

The tan granules of Dylan's remains contrasted starkly with the black, volcanic sand of Hana Bay.

We were in Maui, our sixth day of a dream vacation.  Throughout the week we rode in a helicopter over Molokai's mountains, watched the sun rise over the volcanic crater at Haleakala, tore up the water slide at our resort, boogie boarded on Kamaole beach, attended a luau, and marveled at the scenery on our little road trips to open markets and organic cafes.  Today was our trip on the famous road to Hana, a slow, switchback-laden drive through the most amazing rainforests I had ever seen.  It was July 4th.  It was our last full day on the island. The trade winds combined with some light rain to create a welcome coolness, and the holiday made for light traffic. Our last stop was to Hana's black sand beach to splash in the water, a reward for Colin's patience on the road and a way to stretch our legs and relax for awhile until we took the winding road back to the other side of the island. 

I think we may not have even done it--that is, spread Dylan's ashes on the beach. We were so relaxed and in love with our surroundings, it was hard to think about shifting the mood.  But we had talked about it for months. It was a promise that we had made long ago, to take our sons to Hawaii, and I felt the need to keep it. 

Colin was the first one to reach in and take some of the ashes.  I told Colin that his dad and I always dreamed of the day we could take our kids to Hawaii, ever since I traveled to Oahu eight years ago with him in my belly.  But it didn't work out the way we hoped for our little Dylan.  We had to say goodbye to him so soon after he came into our life.  Someday we will say hello to him again.  So we wanted to bring him here with us and say "Aloha," which means both hello and goodbye. 

We each took some ashes and sprinkled them on the ground. I started to cry a little at the end of my speech.  My habit is to try to keep it together in front of Colin so he doesn't get scared, but I didn't pull it back soon enough, and I saw the alarm in his face.  I told him I was okay, and we started to walk away when Colin stopped, covered his face with his hands, and started to sob loudly.

I sat down with him on a picnic table by the tree where we left Dylan and hugged him, wrapping my arms around his bare, tanned shoulders, relieved that he was letting something out that may have been stuck inside.



    

Wednesday, April 17, 2013

An Army of Mourners

Lately I have been deluged with stories of untimely passing.

Of course, the most prominent one was the tragedy in Boston at the marathon.  I used to think about that event as such a whimsical, terrific party.  Runners in their "Wicked Pissah" shirts from a past race year worn as a badge of honor.  Crowds of Red Sox fans leaving that day's game to walk down the street and cheer on the runners.  A few people staging their own type of marathon in the local bahs.  What a wonderful way to celebrate Patriot's Day, now marred with shrapnel that finds its way into the tissue and sinew of the tradition, maiming it.  Loved ones hurt terribly, limbs amputated, or even dead, just for loving their runners and loving the run.  

But that wasn't the only instance. Just Sunday, I ran across a post on Facebook--I think it was "liked" by a friend, but I can't even remember which one--about a mom and dad who were spending the last days with their five-and-a-half-year-old son after he was pronounced brain-dead.  I started reading their story, and I just couldn't stop.  He had a number of health issues related to a diagnosis of Cerebral Palsy, and at this point in his life he suffered from major cardiac arrest.  His mom and dad held him, still breathing, for several days while they found recipients for some of his organs.  What a wonderful vigil--holding, caressing, and sleeping next to your son up until the very moment that he can be a hero to some excited, hopeful family.  On Monday, at 2:45 (as in just minutes before the Boston bombing) their Facebook page reported that they walked him down to the OR, where they said their final goodbye.  Doctors, nurses and social workers clapped.

The Friday before, another one of our SMA angels in Texas got her wings, a beautiful little girl named Savannah.  I didn't know her parents personally, but I knew about their daughter through posts from Families of SMA about a run held near Houston every year that is named after (Savannah Smiles) to raise money for SMA research.  She was just a few months older than Dylan and would have turned three in June.   

There have been others, too, since Dylan died--but the dates were spread out. I at least had time to reflect, to pray, to collect myself in between.  But these latest events occurred in a three-day span that also preceded my participating today in a class exercise on death and dying with first-year medical students.  So I have felt immersed in my topic.  And, I met yet another mom today--a participant--who still grieves her three-year-old angel. 

I guess what I think is salient here--what I don't want to forget, and what I wish everyone knew--is that there is a literal army of parents handing their children up to God and falling to their knees, every day.  Simultaneously at any given moment, someone is saying goodbye to their child, either because of a tragedy with no warning, or a disease that affects your child's genes and severely limits their lifespan and abilities, or a number of other reasons, none making any sense. 

In my case and those like mine, I wonder every day, what happens to dragon moms when their little ones no longer require their fierce protection?

That's what grieving is all about, it seems.  Finding a new purpose. I have struggled with this one for almost six months. Sure, some of them are easy to identify--continue to be a friend, a wife, and if you're lucky, a mother to the survivors. Heal yourself and your loved ones, for the day when joy returns and you can breathe differently. Thank God for the exquisite experience, even though you're sad and angry as hell.  Pray for the dying and their mothers, their siblings, their fathers, their children. Donate the clothes that are left, the medical supplies, the time you now have. 

I don't know what else I will do yet to carry on Dylan's memory.  But today I offered my story, breaking down and sniveling, to twenty-something med-school students in their pristine white coats, so that they may possibly be the least bit prepared for the first time a parent weeps and snivels in anguish on them. 

Sunday, March 3, 2013

Stronger than you think

I was nursing nasty bruises, skinned surfaces and scabbed-over cuts for more than a week.

I took a self-defense class at one of the local Krav Maga studios a couple of weeks ago, which is where I acquired my wounds. One big cut on my elbow, bruises up and down my arms, big string of bruises on my left leg, some scratches. Oh, yeah--I also had a big scab on the heel of my right hand, which I got tripping on the sidewalk in front of my work three days earlier.  It got opened up pretty nicely again at the class.  I looked like I had joined a fight club.

This class was a three-hour session that worked my every muscle. We learned how to break a chokehold and bend back an attacker's wrist; how to protect your face while throwing a palm or elbow at your attacker's nose; how to grab your attacker on the meaty part of his tricep and shoulder, dig your nails in, and pull him toward you to knee his groin; how to take advantage of the mere milliseconds a man needs to unzip his pants, before raping you, to scoot back and kick his face.  We practiced these moves with our partners and with bags typically used for martial arts and boxing training.  Then we had to fight off attackers in staged scenarios.

I didn't get cut or bruised because these men were unusually rough, or because the class was conducted recklessly or irresponsibly.  I got cut because I went to town on my pretend attackers. 

If we had to hit a practice bag with the heels of our hands, I hit the bag until one of my hands was bleeding and needed to be wrapped up.  I elbowed the bag until my skin was raw.  I banged my attacker's head into the ground (again, the bag) violently, my whole body straddling the bag, hair flying, until I dripped sweat into the pretend attacker's pretend eyes (if, of course, by some miracle they would still have been open). On my three staged attacks, not one of the men took me down to the ground. 

Rape survivors are encouraged to take these classes to regain a feeling of power over their own bodies.  Many were there that day, sometimes having to turn, shaking and in tears, to counselors in attendance from the Rape Crisis Center after a drill. 

I am lucky enough to say I have never been raped.  But Lord knows I have felt powerless.     

It has been too long since I have felt powerful.  I wouldn't even to try to recall it--the last time I felt, frankly, like a bad-ass.  Maybe never.  And it wasn't an isolated feeling--it was mixed with fear, and hypervigilance, and adrenalin, and anger, and fatigue, and sadness for the women around me who had survived unspeakable violations.  The combination of those feelings actually concocted my power.  I have experienced these feelings, in various combinations, more than my share of times over the past couple of years.  But never did I feel empowered. 

This time was different, because self-defense is based on the idea that if you just keep fighting, you can change the outcome.  That's what creates the power--influence over the outcome.  That is what made those bruises such badges of honor, what had me so ramped up with excitement after the class.  Over the last couple of years, power had been drained from my body because all that I did was useless to change the outcome.

The class restored me.  And it opened me up, much like my tiny injuries. 

When you have survived something tragic, like the loss of your son, you kinda want everyone to see those bruises and know that you're still walking around.      

Thursday, January 24, 2013

Dylan's Room, 10:30 p.m.

The most gaping void I feel now, with Dylan gone, opens wide at night.

I know that if I've gone too long without allowing myself to really feel how much I miss him, I'll end up in his room.  I can still picture the crib, the oxygen concentrator at the door, humming.  I can still see the wheeled cart where we kept his IPV, cough machine, suction machine and nebulizer.  I can still picture him sleeping peacefully, unmoving, with his Pixi on (his nose mask for the bipap respirator) and a faint blue light emanating from the bipap. And the numbers on the pulse oximeter above, sitting on the dresser.  Those ever-present numbers.  Heart rate, in red, well under 100.  Oxygen, in green, well above 96.  That was the sweet spot.

But the room is nearly empty now.  Dylan's most cherished belongings are neatly packed in a plastic tub of green, his favorite color.  A few cases of Pediasure await donation, as soon as I can find a home. There is nothing left but a rocking chair, some Snoopy decals on the walls, and his favorite dolls--doggy, Winnie the Pooh and Piglet--sitting on the empty dresser.  The ticking of the wall clock, which we hung so that we could time his treatments, is deafeningly loud, something I never heard when all the machinery was on.

I feel the need to stand in those places, to remember the steps I took. Every night I set the syringes of medicine and a water flush on the nightstand, wheeled the feeding pump in, bag loaded, and plugged it into the wall.  I would place my phone at the head of the crib so I could play Words With Friends with one hand and hold the face mask in place with the other during the IPV treatment.  I plunged the meds into his feeding tube, then flushed it with water, then started his slow overnight feed.  Next were his respiratory treatments--IPV for 15 minutes with saline, then five sets of five coughs.  Then we were done, and I replaced the Pixi mask, kissed his forehead, and turned on the bipap and O2 concentrator in a series of swift movements so that he would go back to sleep quickly.  Every night without fail, he would take an audible breath in when I replaced the Pixi--a sort of reverse sigh of relief--because he knew he was safe to fall back asleep.  The numbers of the pulse oximeter would fall into the sweet spot within a few seconds as I stood at the door.

Those times were just his and mine.  He slept through most of it; he would whimper a little when I removed his mask, acknowledging that he knew what was about to start, but then settled down as soon as I started the IPV.  I admit that some nights, as I prepared the feeding pump and drew the meds while catching a few minutes of TV, I felt ambivalent about the duty.  There was so little down time between Colin's bedtime ritual and Dylan's nighttime treatment that I felt as if there was to time to breathe myself.  But once I got in and sat down by his crib, all of that stress-induced irritation went away.  I could just be with him, quietly caring for his lungs, giving him his nutrition, repositioning his body, kissing his forehead, getting a whiff of his shampooed hair and skin.  My favorite work.

Since I can no longer reach in to his crib, remove his mask, kiss him, hold his feet in my hands, or smell his smell, I sit down in the rocking chair to hug his Pooh Bear and cry hard, purposeful tears, my penance for emptying his room of its contents.

Thursday, January 3, 2013

I have no fear


This was originally written on October 15--while Dylan was in the hospital on the first of two trips in October 2012, before he died.  It was in draft form, but it stunned me how powerful it was, and at a time that was so ambiguous.  We actually went home a few days after this was drafted, and we got to celebrate Dylan's birthday--but his condition turned so rocky again that we had to return to the hospital--for the final time, it turned out.  I felt compelled to just clean it up (very lightly--didn't need much work), avoid messing with any of its original tone or purpose, and publish. 

Dylan is in the hospital again--admitted on his birthday.  Happy Birthday, sweet boy!  I'm sorry we had to postpone your ice cream party.

We have done a stunning job of avoiding this place for 10 months.  I know summer was on our side, and I know that it helped to keep Dylan's sphere of experience limited to the safe, cozy confines of our home.  Nevertheless, we managed to stay away from the clinic and spend those precious days taking him to the beach, laying him on the hammock, riding around in the car.

I walked back to the hospital proud that we were still here--that he is still here in the world with us.  We learned how to care for him--learned how to administer IPV treatments, cough assist, deep nasal and oral suctioning, and CPT.  We didn't rely on doctors, and didn't have to have conversations all the time about his "disease process."

I cannot discount that I was fueled by the trauma of our last experience in December, 2011.  The 2 1/2 weeks before Christmas was fraught with the stomach-turning, drastic ups and downs of a thrill ride at an amusement park--but it's not one we chose.  Right before we had to hospitalize him, Dylan had just started to show signs that he was at the point in his disease in which he needed respiratory support. Then he got pneumonia from aspirating--which can be deadly to an SMA child, and had many scary nights in the hospital. It was as if he was fine one moment, on the verge of dying the next.  Plus, we were fighting a disease that no one on your team of doctors thinks your son will survive.  When you've seen 99 SMA Type 1s die, naturally you're going to assume that #100 will, too.

There is an unspeakable, unbearable desperation when you find out that the people who are supposed to help heal your son, or at least help him survive, do not believe he will be okay.  But after surviving that hospital trip last year, I no longer worry about who will advocate for Dylan. 

I have no fear anymore of being the least experienced or knowledgeable in the room, or of questioning the medical team.  I know Dylan better than anyone else, including these doctors.  Knowing Dylan is the one thing I've truly mastered in my life. It is my greatest accomplishment.  The best doctors pay respect to that knowledge, defer to it.

I have no fear that we will suffer the pain of having to make unbearable decisions about Dylan.  I am convinced that he will stay for as long as he is supposed to and respond to the call quickly when summoned by God.  I am certain we will be absolutely blindsided by his departure, and still I have no fear.  

Finding a Zoo

One thing the books and articles about grieving don't say is that, after the death of a loved one, you are apt to search around for the most random things in your life to to add, omit, or change--to the point of the absurd.

In the two-plus-months that we have lived without Dylan, we have almost traded in our paid-off Toyota Camry for a new Ford Explorer.  It was so close I could smell the new leather seats. (Sniff.) I've also researched poodle mixes to adopt, considered Lasix eye surgery, and hoped that I would be laid off of my job so that I could start my own venture.  I have wondered whether we'd be ready to consider adopting a child in another year. Jason has suggested we move to Seattle, and he also wants to buy a travel trailer. I still maintain that I am getting a tattoo (that one I've said for a long time, though).

The only tangible changes I made was to buy several pieces of clothing from the very overpriced White House Black Market store, which I usually consider above my spending level, and then proceed to gain five pounds back over the holidays.  Somehow, these purchases didn't quench my thirst for a wholesale change--just gave me a little sum to pay off.  And some stunningly flattering pieces that are now a bit snug. 

So, when I recorded and watched "We Bought A Zoo," starring Matt Damon, a couple of weeks ago, I cried and cried, like I hadn't cried in, well, a couple of days.  (Crying is pretty frequent lately.)

Here was this guy who lost the love of his life, his wife and the mother of his children, after what was suggested to be a long, painful illness.  He has to figure out how to comfort and parent his two children, the older one of whom was flunking school, constantly brooding and drawing numerous dark, sad, scary sketches to while away the time. They were a broken family, or at least deeply bruised, with no clear path, no real sense of what was next.

In the film, the father (Damon) comes across 18 acres of land with a house and a defunct, closed zoo, held by the state, whose remaining animals were being tended by a small group of devoted former zoo employees.  He decides to try cashing in all their money to renovate and reopen the zoo, and his family picks up and moves to the house, which is out in "the sticks" (much to the chagrin of the 14-year-old boy with the macabre sketchpad).  Not surprisingly, the zoo employees help fix everything up over a few months, they all become close, a romantic relationship develops between the father and the pretty, 28-year-old head zookeeper (played by Scarlett Johansen), and they survive funny pitfalls (including a grueling inspection by a comically terse, moody inspector) with mildly whacky hilarity.  Of course, they ultimately reopen the zoo to crowds of people and instantly experience monetary and other gratification. The older boy stops drawing scary netherworld beings and confesses his love to a 13-year-old zoo volunteer, played by one of those adorable Fanning girls.

Schmaltzy, yes.  But, it made me cry anyway, and like the dickens.  Maybe it was the debunking of the idea that if you just change your surroundings drastically and direct all your energy into a crazy new venture, you will forget, your pain will subside.  Maybe I cried because even a gorgeous zookeeper with bear shit on her boots would not allow the man to forget how much he desperately missed his wife, just as nothing can make me forget the feel of my sweet Dylan's foot pressed against my cheek, squeezing his toes to "hug" my face. Or the smell of his forehead where I kissed it every night after his last treatment, and the little breath he took as I put on his mask.  Or the helplessness I felt those last days in the hospital, when there was nothing I could do to save him.  Or the sadness I feel now that my older son struggles with inattention and daydreaming in school, to the point where his grades have plummeted at times, and how that then triggers his anxiety, and how I can't heal his pain either. 

Maybe it didn't help matters that the boy's name was Dylan, the actor who played him was named Colin, the zookeeper's name was Kelly (my late sister's name), and the zoo's reopening was on July 7-- Colin's birthday.  Even silly coincidences can trigger my tears.  Especially silly coincidences.    

I hold out hope that some changes will be healing, comforting.  I'm still looking for one. Smaller than a zoo renovation, larger than a tattoo.  Any ideas?