They found something. The medical examiner, the pathologist, the coroner… I’m not sure who does what, but they found something. Alex had a developmental issue with his heart. A developmental configuration problem, not genetic. A condition that couldn’t be detected with a physical exam.
It’s the same type of thing that happens when a healthy athlete drops dead during a game, or a practice. A marathon runner dies during a routine jog, or a football star collapses inexplicably. A type of heart defect that could have gone undetected for years until something happened. We’re still trying to understand the magnitude of the issue, but it sounds like his heart was a ticking time bomb.
“A slit- like, main coronary osteo.” One of the valves in his heart should have been at a 90 degree angle from the aorta. His was acutely angled downward. While we thought his death was SIDS, our pathologist is insistent that Alex’s issue was different.
After all of these weeks, I have made peace with the fact that Alex died of “natural causes” and that he stopped breathing. I was never expecting that they would find anything medically wrong with him. I have shouldered the burden of guilt on and off during this time. Like a cloak that I could take on and off as the mood felt right. Sometimes I made peace with the fact that it wasn’t me. Other times, it was the only thing I could think about. Now there is conclusive evidence that Alex had something wrong with his heart.
At one time, months ago, news like this would have felt like a relief. It would have felt liberating, vindicating, calming. Now it settles in my mind and I keep turning it over and over trying to understand how I really feel about things.
In theory, this is the best possible scenario, right? A tangible explanation for what happened. A medical explanation that doesn’t put Benjamin or any future children at risk. Why does this news seem so empty to me? Not that this is “good” news, but it medically explains what has happened to Alex, and provides some “proof” that there is no blame in his death.
As much as I thought something like this would make me feel better, it doesn’t bring him back. The sadness of missing him seems fresher now. He had something wrong with his heart. How could my little boy, who looked so perfect, have something fatally wrong with him?
The doctors couldn’t detect it, should I have known? I knew him more intimately than anyone else. What is missing here?
Maybe it’s because it’s his heart. It’s one thing if he stopped breathing, but his heart is something that has so many more sentimental attachments to it. You love with your heart. You hold emotions with your heart. His absence breaks my heart. I held my perfect little boy in my arms, never realizing that heart would fail him. I felt such a perfect love from him during his two blissful months on earth. That his heart wasn’t working right makes me feel like that love was tainted.
I know that doesn’t make any sense. The heart muscle pumps blood through veins and arteries. When we feel emotions and love, those feelings come from your brain, and we have attributed them to our hearts. I can’t explain it- my perfect little Alex having any sort of abnormality with his heart brings a new level of pain. Maybe because we see heart surgeries succeed every day. Or maybe because it’s something I never thought a young child who had 1700 ultrasounds would ever have an issue with. Alex’s heart failing him changes the way I view his death all over again.
When I think about the type of heart condition that this was, Alex could have died at 2 months, 2 years or 22 years. Is it wrong to be grateful that he died so young? My mind takes me these places and I don’t know how to turn it off. As terrible as it is to lose him after only two months, I can’t even begin to fathom losing a child at an older age. After you’ve seen him take his first steps, heard his first words, watched him mature from an infant, to a boy, to a man.
I feel cheated that we didn’t have more time with him, but I wouldn’t change things. If I had even one more day with him, I think our goodbyes would have been immeasurably more difficult. And I feel selfish and guilty for thinking these things. Am I really saying I wouldn’t have wanted more time with him because of the hell and the pain we’re going through now?
As much as I would give everything I own to have him back, I can’t imagine losing him later in life. What if we had lost him 10 years from now, when we would be too old to have any more children? At least now we can continue our family and Benjamin can still have a sibling on earth. So now part of me is grateful that things happened the way they did- is that terrible? Gratitude is not an emotion I can understand right now.
And I think about all the ways this could have happened instead of the way it did. Maybe when I wasn’t home with him, maybe once I had gone back to work, maybe when we were still in the hospital… My mind keeps churning on all of these possibilities and I just can’t stop. It’s like I need to conceive 300 different ways Alex’s death could have been worse in order to feel just a little bit better about where we are.
Some people count their blessings, it’s like I choose to count all the crappy things we have somehow avoided.
We found all this information out two days ago. We were on vacation in Texas, enjoying the sun and the pool when we got the news. An unexpected twist in a family getaway that we really needed. We had envisioned time spent thinking beef brisket and sunscreen, not autopsies and heart defects. At least we were together though…
I haven’t really slept since we found out. I just lie in bed and think about Alex’s little heart. Did he feel any pain when it happened? Was he thinking of me when it happened? Did he try to cry out and just couldn’t? Was there anything I could have done for him, had I known?
My faith in God is stronger now than ever. I’m not angry at God for taking Alex, nor do I doubt that God is in all things. It’s not because I’m such a fabulous Christian. Rather, faith in God is the only thing I have left. How terrible and empty would our lives be if there was no heaven? If Alex’s death was the end of his life forever? If there was never a chance that we will meet again?
I’ll steal some words from a song that has special meaning to me now.
Heaven is the face of a little boy, with dark brown eyes that disappear when he smiles/ Heaven is the cry of a little boy, that says mommy please, wait while I nurse for awhile/ And God, I know it’s all of this and so much more/ But God, you know that this is what I’m aching for
We’re still here- hoping and praying. Sometimes tears, sometimes smiles- always in search of laughter and joy. We did have a welcome gift when we got home though. Alex sounded the siren twice during naptime.