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.
Friday, November 1, 2013
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.
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.
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.
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