One year ago today my son passed away.
He went full-term, but was only 4 lbs when born. Doctors had no idea why. But he was healthy, so that's what we focused on.
He progressed normally for the first year, but then began to fall further and further down the growth charts--still, no doctors could explain it. He also stopped developing mentally. He finally learned to walk at age five, but he never learned to talk.
His mother and I divorced in 1992 (when he was 1), and to be honest, it really took two families to take care of him. He coasted along in a weird kind of statis for about six years until he got pneumonia in 1999. The doctors decided to perform a nissan proceedure, and insert a feeding tube directly into his stomach. He'd never eat solid food again.
In 2002, he had surgery to correct cataracts, and this improved his demeanor tremendously. Without being able to talk, we had to work to understand his needs beyond happy/sad, hungry, hurting, messy diaper (ok, that one was easy to figure out).
Then in October of 2004, he had what appeared to be a stroke. He also began to have violent seizures. He was put into a drug-induced coma until the doctors could figure out what was causing them. They finally weaned him down to the barest of essential meds to keep him from seizing, but still be somewhat alert.
His blood/oxygen staturation levels were deeply depressed, and he often needed oxygen to keep the levels elevated. Again, the doctors had no clue as to why. In December of 2004, they sent Jonathan home so he could "die with dignity".
Once home, he actually stabilized a bit, but his quality of life was awful. He slept for 20-22 hours a day, and his waking hours were tough. He'd get his physical therapy 3 times a week, and we'd interact with him as much as possible. But mostly it was about changing his diaper, changing the feeding bags, changing the dressing around his feeding tube, etc.
In May of 2005, he was back at the hospital with pneumonia--he seemed to kick it pretty quickly, and was home after a week. A week later, he was back in the hospital because the pneumonia hadn't totally cleared up. His saturation levels slowly dropped over the next three days until he finally slipped away. We had signed "Do Not Resuscitate" orders, because he'd suffered enough.
In the year since that day, I've moved my family (I remarried in 1993, and have 2 beautiful daughters) the fuck out of utah to California. We've really found a good life here, but there's still a void that will never be filled.
They say that as time goes by, it doesn't hurt less, just less often. But that hasn't been true in my case.
I love you Jonathan. I miss you.
Love, Dad.
He went full-term, but was only 4 lbs when born. Doctors had no idea why. But he was healthy, so that's what we focused on.
He progressed normally for the first year, but then began to fall further and further down the growth charts--still, no doctors could explain it. He also stopped developing mentally. He finally learned to walk at age five, but he never learned to talk.
His mother and I divorced in 1992 (when he was 1), and to be honest, it really took two families to take care of him. He coasted along in a weird kind of statis for about six years until he got pneumonia in 1999. The doctors decided to perform a nissan proceedure, and insert a feeding tube directly into his stomach. He'd never eat solid food again.
In 2002, he had surgery to correct cataracts, and this improved his demeanor tremendously. Without being able to talk, we had to work to understand his needs beyond happy/sad, hungry, hurting, messy diaper (ok, that one was easy to figure out).
Then in October of 2004, he had what appeared to be a stroke. He also began to have violent seizures. He was put into a drug-induced coma until the doctors could figure out what was causing them. They finally weaned him down to the barest of essential meds to keep him from seizing, but still be somewhat alert.
His blood/oxygen staturation levels were deeply depressed, and he often needed oxygen to keep the levels elevated. Again, the doctors had no clue as to why. In December of 2004, they sent Jonathan home so he could "die with dignity".
Once home, he actually stabilized a bit, but his quality of life was awful. He slept for 20-22 hours a day, and his waking hours were tough. He'd get his physical therapy 3 times a week, and we'd interact with him as much as possible. But mostly it was about changing his diaper, changing the feeding bags, changing the dressing around his feeding tube, etc.
In May of 2005, he was back at the hospital with pneumonia--he seemed to kick it pretty quickly, and was home after a week. A week later, he was back in the hospital because the pneumonia hadn't totally cleared up. His saturation levels slowly dropped over the next three days until he finally slipped away. We had signed "Do Not Resuscitate" orders, because he'd suffered enough.
In the year since that day, I've moved my family (I remarried in 1993, and have 2 beautiful daughters) the fuck out of utah to California. We've really found a good life here, but there's still a void that will never be filled.
They say that as time goes by, it doesn't hurt less, just less often. But that hasn't been true in my case.
I love you Jonathan. I miss you.
Love, Dad.
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I have zero comprehension of the kind of pain that you must still be enduring due to losing Jonathan. It is a pain infinitely more than I have ever encountered for sure.
But I just wanted to say that I'd hug you if I could and that your boy will always live on in your memory and in those who knew him.
Frankly, it makes me very sad. No human being should ever have to endure the kind of misery Jonathan suffered, but I can say with certainty that it helped him a great deal to be cared for by parents who loved him.
I hope you remain extraordinarily proud of your little boy.