I just wanted to lay out the plans and ideas I intend to make happen over the next couple of months.
-Eli shirts are available to order for ONE MORE DAY at www.booster.com/love4eli
-Eli's 5th birthday is coming up, which is wonderful and terrible. I am (you are) throwing a party for local kids who are immigrants and former refugees. These are kids who don't often get the opportunity to let loose and just be kids. So we're having the party we'd have for Eli....except the party is on steroids and it's for kids who are still here and who deserve a chance to party. We are expecting over 100 kids. THANK YOU to everyone who has donated food and supplies! And special thanks to www.bouncearoundjax.com for donating bounce houses, slides, a trackless train, and all manner of fun!
-Eli's actual birthday is the 22nd. I'm hoping I'm up to making chocolate cupcakes that day. Eli's favorite. I"m dreading the actual day. The anticipation is probably worse than the actual day will be. I guess we'll find out.
-I would like to have an informal Eli day at a Jacksonville Suns baseball game in April. I'll just put it out there on facebook and the blog and if you want to come, please buy a ticket, wear an eli shirt if you have one, or wear green. Ideally I'm thinking a weekend in mid-April. The schedule is out, but tickets aren't available yet for the season so I'm kind of waiting on that......well, and to get through Eli's birthday and spring break.
-I'm looking to do a bone marrow registration drive this summer, hopefully in July. Another opportunity to wear Eli shirts! There are some things to work out, but I think we can make it happen. Again, gotta get through March before I can start organizing.
So those are the Eli things on the horizon. Thank you so much for sticking with me through this marathon of January-July. I'm constantly aware of what was happening a year ago and it pretty much sucked for these seven months, and then it sucked after those seven months ended. But somehow time marches on and here we are. We do the best we can. Sometimes the best we can is a huge party for some deserving kids. Sometimes the best we can is getting out of bed before it's time for school pick up in the afternoon.
I mentioned once before that Hospice offers grief counseling and support free of charge and how helpful it has been for our family. Our hospice here does grief retreats for kids ages 7-17 twice a year. We made Ty go, which is exactly how all parents/guardians of campers get their kids to go, haha. He was fine, but it was hard for me to leave him there to be vulnerable with strangers. When we picked him up at the close of the weekend, all the kids and teenagers were acting like they had known one another forever, they were smiling and joking. It was incredible. I cried all morning, feeling thankful the weekend had gone so well, proud of my big kid, and tender for all the losses that brought so many kids to grief camp.
The professional grief counselors that run the weekend know exactly what they are doing. The campers get a chance to feel a bit normal with peers who can understand their grief. I am beyond grateful to all those who support Hospice financially, so these types of events can be offered for kids who really need it.
Thanks for checking in!
Sunday, March 13, 2016
Tuesday, March 1, 2016
The Other Side of the Miracle
One of the sanity-savers we employ in Grief Club is humor. Well, humor....morbid death jokes...potayto, potahto. It's called coping skills. But we often recognize and crudely acknowledge a great divide between the miracle-havers and the non-miracle-havers. We're the non-miracle-havers. We're death club. They, everyone not in death club, are miracle club. It's easy to spot who is in what camp as you interact with folks. Generally speaking, anyone who has not yet experienced death nor a miracle is in miracle club. I mean, isn't that the one you'd pick if you had a choice?
It's easy to say those people over there got exactly what they wanted and we're over here drowning in our sorrows, ignored by society. That isn't reality. The things that are dubbed "miracles" are often just the science working the way the medical trials said they would, the way the doctor hoped it would 30% or 50% or 90% of the time. The truth is, the "miracle" often leaves families nearly as shattered as death could have. I know because I know "miracle" families.
It's easy to think if Eli had just gotten past pneumonia he would be here now. But he had so much working against him. IF he hadn't died that Sunday in July and IF his new immune system kept growing steadily all these months and IF he didn't ever develop Graft Versus Host Disease while his immune system grew and IF the antiviral drug kept the adenovirus at bay for close to a year until he developed T cells and IF he got strong enough to withstand peritoneal dialysis and IF we were able to keep a handle on his steroid-induced diabetes and IF he started tolerating enough food in his stomach to be nourished and IF a million other things went exactly right and NONE of the bad options went too bad...we'd still be in Durham, North Carolina now, more than seven months later, waiting on a kidney transplant. Over a year since we first drove up, with 16 hour notice to pack for an unforseeable amount of time in a season we don't even have in Florida. That's a long time to have a wait-and-see plan.
Maybe you were hoping for the miracle for Eli's kidneys? Me too. But it turns out his kidneys shut down due to the toxicity of the chemo that prepped him for transplant, and then when his adenovirus counts were climbing over the summer the doctors switched him from a relatively safe, trial oral antiviral drug, to a highly nephrotoxic antiviral IV drug. Nephrotoxic=toxic to kidneys=kidney killer. So if his kidneys weren't already shot, they would be due to the drug change, which Eli needed in order to not die from adenovirus. The week or two before he died his doctors were already talking kidney transplant sometime next year. This wasn't their first rodeo. They've had a number of patients need kidney transplants after months of recovering from bone marrow transplant.
My point is, kids like Eli don't just wake up healed one day because someone prayed and believed for a miracle. Or even if hundreds of thousands of people did.
Sometimes kids that sick do get their miracle and do get better. But here is what it looks like: months and months (7, 10, 12, more?) isolated at home. Parents trying to work because they are already financially ruined from their child's illness, but having to work at different times so one is always home with their child, who could die from a common cold. Being absolutely insane about sibling germs, spouse germs, pizza delivery germs, bacteria from food that has been sitting out longer than 30 minutes, bacteria from the grocery bags which touched the germy grocery cart before they got home, basically every germ ever because they all have the capacity to kill your child. Not being able to run out to the store to pick up milk, eggs, whatever. 15-20 oral medications each day, many taken 2-3 times per day. Waking up in the middle of the night to give more of those meds. Never sleeping more than a few hours at a time. Feeding your child through a feeding tube. Changing the dressing on their central line (this is a medical procedure done by nurses in a hospital, but many times parents are trained as to avoid getting home health care involved). Taking your child to daily and weekly clinic appointments, physical therapy, occupational therapy, speech therapy, The constant struggle of trying to get your child to eat because their health actually does depend on it. Frequent ER visits for anytime something is a little out of whack with your kid. And a million other things that I am forgetting. All the while, knowing it could all come crashing down at any moment with any less than ideal blood test.
Does that sound like living the miracle life? You get to keep your kid, for the time being, but you get to lose your mind, your friends, possibly your marriage, some family members, any opportunity to take care of yourself, often your faith community, your financial stability, any kind of stability.
Would I choose that if I could keep Eli? In a heartbeat.
The parents that are in it, that KNOW how hard it is, they would choose it over death, too. Every single time.
It gets better for some kids after a year or two. For others, they have permanent damage. It will always be taxing to care for them.
While it's tempting and easy to roll our eyes at the preachy miracle-clubbers, the true miracle club members understand what it means to live the miracle life. It isn't rainbows and hallelujahs. It's needing help and not having anyone to ask. It's survivor's guilt. It's watching and praying as child after child dies, the ones your child played with in the hospital, whose parents you had coffee and cried with on your own worst days. It's being expected to be grateful all the time when you're mostly just exhausted and scared. It's headaches, it's nightmares, it's waking up to jaw pain from grinding your teeth due to stress. It's living in the ruins of your former life. This is the other side of the miracle.
It's easy to say those people over there got exactly what they wanted and we're over here drowning in our sorrows, ignored by society. That isn't reality. The things that are dubbed "miracles" are often just the science working the way the medical trials said they would, the way the doctor hoped it would 30% or 50% or 90% of the time. The truth is, the "miracle" often leaves families nearly as shattered as death could have. I know because I know "miracle" families.
It's easy to think if Eli had just gotten past pneumonia he would be here now. But he had so much working against him. IF he hadn't died that Sunday in July and IF his new immune system kept growing steadily all these months and IF he didn't ever develop Graft Versus Host Disease while his immune system grew and IF the antiviral drug kept the adenovirus at bay for close to a year until he developed T cells and IF he got strong enough to withstand peritoneal dialysis and IF we were able to keep a handle on his steroid-induced diabetes and IF he started tolerating enough food in his stomach to be nourished and IF a million other things went exactly right and NONE of the bad options went too bad...we'd still be in Durham, North Carolina now, more than seven months later, waiting on a kidney transplant. Over a year since we first drove up, with 16 hour notice to pack for an unforseeable amount of time in a season we don't even have in Florida. That's a long time to have a wait-and-see plan.
Maybe you were hoping for the miracle for Eli's kidneys? Me too. But it turns out his kidneys shut down due to the toxicity of the chemo that prepped him for transplant, and then when his adenovirus counts were climbing over the summer the doctors switched him from a relatively safe, trial oral antiviral drug, to a highly nephrotoxic antiviral IV drug. Nephrotoxic=toxic to kidneys=kidney killer. So if his kidneys weren't already shot, they would be due to the drug change, which Eli needed in order to not die from adenovirus. The week or two before he died his doctors were already talking kidney transplant sometime next year. This wasn't their first rodeo. They've had a number of patients need kidney transplants after months of recovering from bone marrow transplant.
My point is, kids like Eli don't just wake up healed one day because someone prayed and believed for a miracle. Or even if hundreds of thousands of people did.
Sometimes kids that sick do get their miracle and do get better. But here is what it looks like: months and months (7, 10, 12, more?) isolated at home. Parents trying to work because they are already financially ruined from their child's illness, but having to work at different times so one is always home with their child, who could die from a common cold. Being absolutely insane about sibling germs, spouse germs, pizza delivery germs, bacteria from food that has been sitting out longer than 30 minutes, bacteria from the grocery bags which touched the germy grocery cart before they got home, basically every germ ever because they all have the capacity to kill your child. Not being able to run out to the store to pick up milk, eggs, whatever. 15-20 oral medications each day, many taken 2-3 times per day. Waking up in the middle of the night to give more of those meds. Never sleeping more than a few hours at a time. Feeding your child through a feeding tube. Changing the dressing on their central line (this is a medical procedure done by nurses in a hospital, but many times parents are trained as to avoid getting home health care involved). Taking your child to daily and weekly clinic appointments, physical therapy, occupational therapy, speech therapy, The constant struggle of trying to get your child to eat because their health actually does depend on it. Frequent ER visits for anytime something is a little out of whack with your kid. And a million other things that I am forgetting. All the while, knowing it could all come crashing down at any moment with any less than ideal blood test.
Does that sound like living the miracle life? You get to keep your kid, for the time being, but you get to lose your mind, your friends, possibly your marriage, some family members, any opportunity to take care of yourself, often your faith community, your financial stability, any kind of stability.
Would I choose that if I could keep Eli? In a heartbeat.
The parents that are in it, that KNOW how hard it is, they would choose it over death, too. Every single time.
It gets better for some kids after a year or two. For others, they have permanent damage. It will always be taxing to care for them.
While it's tempting and easy to roll our eyes at the preachy miracle-clubbers, the true miracle club members understand what it means to live the miracle life. It isn't rainbows and hallelujahs. It's needing help and not having anyone to ask. It's survivor's guilt. It's watching and praying as child after child dies, the ones your child played with in the hospital, whose parents you had coffee and cried with on your own worst days. It's being expected to be grateful all the time when you're mostly just exhausted and scared. It's headaches, it's nightmares, it's waking up to jaw pain from grinding your teeth due to stress. It's living in the ruins of your former life. This is the other side of the miracle.
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