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.        

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.

     

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.

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.

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.