This disease is hideous. Really, truly hideous.
Tonight I was lying in bed with Simon as he was trying to fall asleep and wondering if it's worse to have a diagnosis that is for sure degenerative and inevitably leads to death or something like Cardiomyopathy that leaves you with some totally cruel semblance of hope. I don't know which one is worse. I just know they both suck. A lot.
A little girl on our Cardiomyopathy listserv who has been stable for the last 5 years just had a routine cardiology check up. A check up just like the ones Simon gets twice a year. The check ups where you just do all the tests to make sure everything is chugging along like it should be. The kind that I get nervous about but tell myself to chill about because he's doing great.
Well, today, a family that has been chugging along just like us, with a kid that seemed to be doing great, got the news that if the med blitz they are about to do doesn't work, in three weeks, they'll have to go back into the hospital and put her on IV Milrinone. Their cardiologist cried.
This news comes on the heels of the death of a 6 year old on our Listserv who was also stable, got a virus and was sick for a few days. Then he just died in his Dad's arms at home. His Mom was tending to his one month-old brother who was also just diagnosed with this disease and is critically ill as well.
Matt, a teen on our listserv, just had a heart transplant last month. He, too, was stable for years and then about a year and a half ago, started to decline. He was listed for a heart for over a year and his family spent months in the hospital with him while they waited. Months.
I feel like it's taken almost everything we've had to make it through the last 5 years, to claw our way up to some semblence of a normal, stable life. When I get news like this, I feel like a bumbling cartoon character who walks through the scenes ignorant of the anvil hanging over their head by a fraying thread. The idea that one gentle exhale from Fate could tip us back into the abyss we just crawled out of makes me furious. And like we're morons for even trying.
I know there is not really any other alternative than putting one foot in front of the other and hoping for the best but it just seems futile sometimes. Sometimes I just want to sit down on the curb and cry and stop trying to keep up with everyone else.
*sigh*
Lest the despair of the macro swallow us all up whole, let us switch to the micro (or not so micro) for a minute.
In about a month, thanks to the immense generosity of my mother (who is also our landlord) our apartment will be transformed from a 1 bedroom, 1 bathroom apartment without a separate dining room to a 2 bedroom, 2 bathroom palace with a dining room! Laura and I will FINALLY have our own bedroom and Simon's toys will not be all over our common living space. I can't even quite fathom what our lives will be like.
Most of the work has taken place with us living there since we're building out the unfinished space under the house, behind our living room wall. We've been in a sublet for this week, go to Hawaii for a wedding next week (I know. Amazing), have one more week in the sublet and then we will get to move back in. It might not be totally finished but it will be done enough for us to live in. We'll post a bunch of before and after pics when it's done.
That's where we are. Grieving, terrified, stumbling along, and having great lives in spite of the terror. Simon is getting the hang of Kindergarten. Laura is leading a support group for parents of kids with special needs. I'm trying to get back to regular exercise with really fun classes at the YMCA. We're all trying to do good in the world as we go.
It's...life, I guess, and it's what we got, so I'll take it. I just might be a little pissed about this particular deck of cards sometimes.
Tonight I was lying in bed with Simon as he was trying to fall asleep and wondering if it's worse to have a diagnosis that is for sure degenerative and inevitably leads to death or something like Cardiomyopathy that leaves you with some totally cruel semblance of hope. I don't know which one is worse. I just know they both suck. A lot.
A little girl on our Cardiomyopathy listserv who has been stable for the last 5 years just had a routine cardiology check up. A check up just like the ones Simon gets twice a year. The check ups where you just do all the tests to make sure everything is chugging along like it should be. The kind that I get nervous about but tell myself to chill about because he's doing great.
Well, today, a family that has been chugging along just like us, with a kid that seemed to be doing great, got the news that if the med blitz they are about to do doesn't work, in three weeks, they'll have to go back into the hospital and put her on IV Milrinone. Their cardiologist cried.
This news comes on the heels of the death of a 6 year old on our Listserv who was also stable, got a virus and was sick for a few days. Then he just died in his Dad's arms at home. His Mom was tending to his one month-old brother who was also just diagnosed with this disease and is critically ill as well.
Matt, a teen on our listserv, just had a heart transplant last month. He, too, was stable for years and then about a year and a half ago, started to decline. He was listed for a heart for over a year and his family spent months in the hospital with him while they waited. Months.
I feel like it's taken almost everything we've had to make it through the last 5 years, to claw our way up to some semblence of a normal, stable life. When I get news like this, I feel like a bumbling cartoon character who walks through the scenes ignorant of the anvil hanging over their head by a fraying thread. The idea that one gentle exhale from Fate could tip us back into the abyss we just crawled out of makes me furious. And like we're morons for even trying.
I know there is not really any other alternative than putting one foot in front of the other and hoping for the best but it just seems futile sometimes. Sometimes I just want to sit down on the curb and cry and stop trying to keep up with everyone else.
*sigh*
Lest the despair of the macro swallow us all up whole, let us switch to the micro (or not so micro) for a minute.
In about a month, thanks to the immense generosity of my mother (who is also our landlord) our apartment will be transformed from a 1 bedroom, 1 bathroom apartment without a separate dining room to a 2 bedroom, 2 bathroom palace with a dining room! Laura and I will FINALLY have our own bedroom and Simon's toys will not be all over our common living space. I can't even quite fathom what our lives will be like.
Most of the work has taken place with us living there since we're building out the unfinished space under the house, behind our living room wall. We've been in a sublet for this week, go to Hawaii for a wedding next week (I know. Amazing), have one more week in the sublet and then we will get to move back in. It might not be totally finished but it will be done enough for us to live in. We'll post a bunch of before and after pics when it's done.
That's where we are. Grieving, terrified, stumbling along, and having great lives in spite of the terror. Simon is getting the hang of Kindergarten. Laura is leading a support group for parents of kids with special needs. I'm trying to get back to regular exercise with really fun classes at the YMCA. We're all trying to do good in the world as we go.
It's...life, I guess, and it's what we got, so I'll take it. I just might be a little pissed about this particular deck of cards sometimes.
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| Have you ever seen a healthier, more alive looking kid? |
