Today is one year since Eli's transplant. It would be day 366.
I just keep thinking about last year. How we were so damn hopeful. It felt like we had been treading water for so long and FINALLY we were doing something proactive. Something that could/would heal my baby.
It was our only hope. Of course we were hopeful.
Bone marrow transplants typically have a 90%-91% success rate. Eli's bone marrow doctor told us he thought there was somewhere between 50%-80% chance it would work. Eli' immunologist thought it was in the ballpark of 60%-70%. But a bone marrow transplant not working could mean death or it could mean the cells fail to grow and another transplant is needed. A second transplant is always more risky.
The day after Eli's transplant, Jerry and I went out to eat. I think I was eating mussels, but it may have been oysters. I took a bite and my molar came down on something hard. I was temporarily horrified. I fished the hard thing out of my mouth and it was a pearl. A true pearl that had formed in my mollusk from a grain of sand under immense pressure. And it felt significant. It felt meaningful. It felt rare. So I kept it.
I've had my pearl in a baggie in my purse for nearly a year. This week I received a silver charm imprinted with Eli's fingerprint, which I had ordered a couple of months ago. The Duke BMT Family Support Program provides one fingerprint charm for every child that goes through bone marrow transplant. You can order more through them as they receive a reduced rate through the company they use. We were finally able to get Eli's fingerprint on a piece of cardstock when he died. He hated feeling messy so we kept putting it off. I finally ordered my charm of his fingerprint in February. When it came I knew I needed to put it in a chain with my pearl. I now have a charm of Eli's condensed ashes (about the size of a pencil eraser), a charm of his fingerprint (about the size of a dime), and my pearl in a pearl cage, all on a chain. And I love it.
Just because what I hoped for didn't come to be doesn't mean my hope was unfounded, and it doesn't make my pearl meaningless. Of course we had hope. We had hope so powerful you could practically touch it. It felt contagious. Even though it hurts to remember that hope now, it was right and true at the time. And even though I thought my pearl symbolized the struggle of Eli's health and moving toward a beautiful life with him, I'm glad I kept it. It doesn't symbolize any particular struggle or hardship for me anymore. It symbolizes a moment. A particularly hopeful moment. That hope is good and hope exists, even if I don't have any of my own.
We're going to the Suns game shortly in Eli's honor. I have mixed feelings about it. It will probably be a lot of socializing, which is hard, but I knowingly brought that on myself. I know a number of people will be there and it is so kind of them to give their Sunday afternoon in a gesture of love. We have the best people.
I am going to eat french fries with loads of ketchup and salt and that is going to be amazing.
Sunday, April 17, 2016
Women's conference
This is a difficult story for me to communicate well because it is deeply troubling and emotional.
Shortly after Eli died, within 2 months, I went to a women's conference taking place in my city. Several of my friends were going and had gone in the past. Some of these women had been mentors to me in the past half dozen years. They spoke highly of this conference and how much truth they always found there and how it was always a powerful spiritual experience. I was trying so hard to find "normalcy" after being separated from my family and community and support system and everything familiar to watch my kid suffer and die over seven months. So I went to the conference.
There was a well known male christian author and speaker as the keynote speaker. This was not exciting to me at a women's conference, because why was a dude there? I would have preferred to hear from a woman. But I figured the folks that put the conference on who are well respected knew something I didn't or just felt like this guy was the right fit. Fine, no biggie, I can get over myself (sometimes).
One evening of the conference this man was giving a talk and I was taking notes here and there. My perspective was he was dancing a little too close to the prosperity gospel, but again, I was with people I trusted. He never went full prosperity gospel so I pressed on in giving the whole thing a chance. Then he said something that made me freeze. My breath caught, my body froze, and a chill went down my spine. He said God only takes something away when He has something greater for us.
What? Hundreds of thousands of people had just prayed for my sick baby to be healed and God did not answer our pleadings. My baby died. Are you saying God took away my baby so that He could give me something more?
There are so very many reasons this is a crock of shit, I could fill an encyclopedia with them. Here are just a few: this is not in the bible; in what we know of the nature of God, God doesn't seem terribly linear, but this is a completely linear statement; what exactly is it that is so much greater that God will grant me now that I have buried my child? What has God granted other bereaved parents that is so much better than our kid we used to have?; and on and on. One thing that happens nearly across the board for bereaved parents is we use child loss as a sieve to sort out truth. If something is really true, it will be true in my situation of having a dead kid. If it doesn't stand up to child loss it's just not true. Spoiler: the vast majority of things people say and believe cannot be true.
Back to the conference. I didn't storm out, I didn't have a panic attack, I didn't stand up and start screaming at the guy. I waited until the end of his talk, which closed out the evening, and approached him. I wanted to give him a chance to explain himself. I wanted to hold up his statement to child loss and I wanted him to say, "No, that's not what I was saying. You misunderstood. It's like this...." I really, really wanted him to say that. I half expected he would.
I waited for several other women to speak with him and then he looked at me and I started crying. (I hate crying in front of people. I hated that I was crying, but I could do nothing about it.) I told him that my 4-year-old son had been very sick and in the hospital and had suffered greatly and ultimately died, and that what he said, that God only takes things away when God has something greater to give, doesn't add up for me. I hope you are picturing me FOR ONCE not being self-righteous, not being sassy, but being open and honest, asking instead of trying to prove something, laying it all out. Because this famous christian speaker/author looked at me in the face and said, "Perhaps God has another son out there for you, a son who doesn't have a family." It immediately became clear to me that he had no idea what he was talking about. None. Because I replied, "Oh, well, I already have a son who came to me that way, but thanks anyway." And I left.
WHAT IN THE ACTUAL FUCK. One child does not, will not, cannot replace another. Ever. What does it say about God if you believe that God took my son away so I'd adopt a child? If you think that, please don't adopt. Ever. Children who are adopted do not need that type of love and care. They need true, unconditional love. Also, if you are one that thinks that God lets kids die so their parent will adopt a "less fortunate" child, you should stop talking to people, especially with a microphone in front of your face, and also stop writing books. That is not a god that anyone wants to know or believe in. Who the hell says that to a person who is baring their soul about their dead child? What is wrong with that person?
I did not go to any other sessions this man was at, but I did go to the closing session, where a well known and respected woman who had basically developed the conference was speaking. She said she felt the Lord moving in her to address some things, but the cynic in me says she had to do some cleaning up after the keynote crapped out of his mouth. She started off by going off topic and talking about suffering and how God doesn't cause our suffering, and God doesn't give us suffering in order to teach us. That's not how it works. And I appreciated the hell out of her for saying that. She said some other things that seemed true enough and stood up to the sieve of child loss.
So that's my story. I'm not going back next year.
Some notes:
-In hindsight, that was bad timing to go to a women's conference. Two months is nothing. But my life was so weird after coming home, I could hardly feel gravity for awhile.
-I still love and treasure the women I went to the conference with. Just because it turned out bad for me doesn't mean they had anything to do with it.
-I push back against using the pronoun "he" in talking about God. God is neither male nor female, but using He gives us a picture of a wise grandpa or some such character, which is not God. I try to only use the word god for God when speaking for myself, and it can be repetitive. Sorry not sorry. I generally only use "He" when that is what someone else has said.
Wednesday, April 6, 2016
It doesn't really help
My grief counselor just came back from maternity leave, so we have been catching up on how things have been going since I last saw her in January. When I look at the last three months I can list all of the things I've been doing and working on for my health and my mental health. I started running (...again) and have been training for a 5k. I started weight watchers and it kind of makes me crazy, and I haven't exactly stuck to tracking every single thing I eat, but I have been eating really healthy, cutting sugar, drinking copious amounts of water. Progress is slow and steady. On my non-training days I either do a workout video or go for a hike. I've been getting outside. I've gone to the doctor and the dentist because it's been years... And I've been doing the things the doctor and dentist told me to do. For all of the celebrations that have come along I've done something good for someone (valentines for kids in the hospital, party for refugee kids for Eli's birthday). I have gone to a few social events. I see my friends. When I'm able to focus I read or crochet. I let myself rest a lot (and try not to feel guilty).
And none of it helps.
Sometimes I have a good day. Sometimes there are weeks and weeks where I can hardly get out of bed. There doesn't seem to be any rhyme or reason to any of it.
Sure, there are certain days that are just going to be hard no matter what. Birthdays, holidays, medical anniversaries, etc. But I've been down for the count since about mid-March. And today is the first day I'm not finding my way back to my bed. Yet.
My counselor told me that she's not surprised nothing is helping. That it's good for me to be doing these things, all the same. But there is no fix. And there never will be.
If you need me I'll probably be laying in bed, convincing myself over a two-hour period to go for a 30-minute run.
And none of it helps.
Sometimes I have a good day. Sometimes there are weeks and weeks where I can hardly get out of bed. There doesn't seem to be any rhyme or reason to any of it.
Sure, there are certain days that are just going to be hard no matter what. Birthdays, holidays, medical anniversaries, etc. But I've been down for the count since about mid-March. And today is the first day I'm not finding my way back to my bed. Yet.
My counselor told me that she's not surprised nothing is helping. That it's good for me to be doing these things, all the same. But there is no fix. And there never will be.
If you need me I'll probably be laying in bed, convincing myself over a two-hour period to go for a 30-minute run.
Tuesday, April 5, 2016
Getting screwed
One thing that I continue to be tormented by is this idea that our decisions in Eli's treatment caused his suffering and death.
I can logically say we did not have a choice. We went to the very best doctors, we tried with little to no success to keep Eli as stable as possible, he certainly would have died without a bone marrow transplant, it was our only option. These things are all true, I think. But the medical treatment was brutal, inhuman, suffering. And I watched it. And I signed release after release, consenting to more, more, more interventions. So it feels like I did it to him. And he didn't deserve it, any of it.
But I am also able to recognize that there was nothing else we could have done. We were screwed, he was screwed, from the moment he was born. Florida started screening for immune deficiencies (T-cell related deficiencies) 17 months after Eli was born. Immune deficiencies are rare and difficult to diagnose outside of newborn screening, and even now Eli's has yet to be discovered. Even after all his treatment, even after $22,000 in genetic testing, we still don't know exactly what was wrong with his immune system. It's not understand and so there isn't a name for it. We just don't know. His DNA was supposed to have been sent to a researcher doing indepth immune studies on a specific gene, but I am not waiting for answers that will not come.
Yes, he had Evan's Syndrome. Yes, his body created antibodies that attacked his red blood cells, white blood cells, and platelets. Yes, it was severe and not well controlled and what led him to bone marrow transplant. But this is an autoimmune disease which in Eli's case manifested as a result of a malfunctioning or non-functioning immune system. The malfunctioning/non-functioning immune system could have been identified at birth. But not until September 2012 when Florida expanded newborn screenings to include immunodeficiencies. Too late for Eli, too late for us.
We have friends whose child was born one month prior to the implementation of immunodeficiency newborn screening in Florida. Their child is dead now. One month made the difference. One month of the governor (Rick Scott) playing political games. Really. It cost their family their child's life.
How do you live with the knowledge that no matter what you did, you were screwed from the beginning? That your child would likely die, you just didn't know it? That your child's best chance was a coin flip and it necessitated some of the worst suffering? That you agreed to put your child through all of that?
If I figure it out I'll let you know.
I can logically say we did not have a choice. We went to the very best doctors, we tried with little to no success to keep Eli as stable as possible, he certainly would have died without a bone marrow transplant, it was our only option. These things are all true, I think. But the medical treatment was brutal, inhuman, suffering. And I watched it. And I signed release after release, consenting to more, more, more interventions. So it feels like I did it to him. And he didn't deserve it, any of it.
But I am also able to recognize that there was nothing else we could have done. We were screwed, he was screwed, from the moment he was born. Florida started screening for immune deficiencies (T-cell related deficiencies) 17 months after Eli was born. Immune deficiencies are rare and difficult to diagnose outside of newborn screening, and even now Eli's has yet to be discovered. Even after all his treatment, even after $22,000 in genetic testing, we still don't know exactly what was wrong with his immune system. It's not understand and so there isn't a name for it. We just don't know. His DNA was supposed to have been sent to a researcher doing indepth immune studies on a specific gene, but I am not waiting for answers that will not come.
Yes, he had Evan's Syndrome. Yes, his body created antibodies that attacked his red blood cells, white blood cells, and platelets. Yes, it was severe and not well controlled and what led him to bone marrow transplant. But this is an autoimmune disease which in Eli's case manifested as a result of a malfunctioning or non-functioning immune system. The malfunctioning/non-functioning immune system could have been identified at birth. But not until September 2012 when Florida expanded newborn screenings to include immunodeficiencies. Too late for Eli, too late for us.
We have friends whose child was born one month prior to the implementation of immunodeficiency newborn screening in Florida. Their child is dead now. One month made the difference. One month of the governor (Rick Scott) playing political games. Really. It cost their family their child's life.
How do you live with the knowledge that no matter what you did, you were screwed from the beginning? That your child would likely die, you just didn't know it? That your child's best chance was a coin flip and it necessitated some of the worst suffering? That you agreed to put your child through all of that?
If I figure it out I'll let you know.
Spirit of fear
This is dedicated to a sweet friend. She knows who she is. This post is a result of lengthy conversations we have had on this subject.
When death comes for a person, your person, your person you cannot live without, it changes everything. Everything. Who you are at your core is not who you were. It takes time to figure out this new person you are, and I am still in the middle of that unpleasant exploration.
One aspect of surviving a loss that the vast majority grievers experience is this awareness of the reality of death. It doesn't just happen to other people. It happens to you. It happened to you once and now you know how easily it could happen to you again. It's a hyperawareness that does not reflect reality, but does reflect the reality inside a griever's brain. In Harry Potter and the Deathly Hallows, Harry asks Dumbledore, "Is this real? Or has this been happening inside my head?" Dumbledore replies, "Of course it is happening inside your head, Harry, but why on earth should that mean that is is not real?" In the book, and in life, this is meant to be a reassuring statement of otherwordly experiences. But it's also true in grief. What is happening in my head and my friend's head in the swirling rapids of grief is very real. It is also very terrifying. It can lead to the dreaded "spirit of fear". (Please read that in a sarcasm font.)
If you have spent more than ten minutes with a group of American Christians, you will be familiar with the phrase "spirit of fear". A spirit of fear is when you have fears about certain things or many things, and it is generally believed that you are just holding onto that fear for no good reason and not "giving it to God". My real and only beef with the "spirit of fear" is that it is viewed and judged as one of the worst sins, something the person in question has invented and refuses to let go of.
So my friend has a spirit of fear, so I have a spirit of fear, so freaking what? Some people have a spirit of lust or greed. Some people have a spirit of anger. Some people have a spirit deceit. But heaven forbid anyone have a spirit of fear, that must mean they aren't a true believer. Who decided that a spirit of fear is the absolute worst attribute?
What is someone supposed to do about a spirit of fear anyway? My friend prays about it. And then she prays about it again. And then she prays about it again. But I guess she must not be praying right or not really believing she can be healed from her fear, otherwise that would have happened by now. (Again, that last sentence was sarcasm.) These are the things she is told.
You know, I've seen about 85,000 times on the internet that in the bible it says, "Do not be afraid" 365 times, once for each day of the year. So that must mean that we're really not supposed to be afraid (sarcasm). I have not checked to see if this is accurate and I care 0% how many times it says to not be afraid in the bible. I mostly find it irrelevant because I suspect in the original Greek/Hebrew/Aramaic texts it is likely a slightly different number due to the translations, and translations of translations, etc. But since it tells us or specifically a person in the bible to not be afraid or to have no fear so many times, I actually think that speaks to how human it is to have fear. To how real fear is. If God's gotta say it that many times, it must be pretty common to be afraid. It must be a human reaction to trauma and life experiences.
And what do you know? All these thousands of years later we're still just humans having human experiences. We still experience the weird, the horrifying, and the unknown. And we still react with fear. And God still tells us to not be afraid. And for some people it's still a struggle. I suspect it is for way more folks than will admit it.
I listened to a pastor speak once and even though she had been through some pretty rough stuff, she said that her faith was a gift from God, that she doesn't struggle with belief. I found this to be a beautiful acknowledgment of our differing spiritual experiences as humans. She did not claim that she had a great faith because she's a great believer or she just has this whole Christianity thing figured out. She said it was a gift she had been given. It makes me think of my friend who has the [dreaded] spirit of fear. She has not been gifted with peace in faith. It's a struggle. And God love her, she keeps wrestling. But she has been gifted with compassion, love, justice, caretaking, perseverance, and a great sense of humor to name a few of her gifts. I wish instead of directly or indirectly calling her out for her "spirit of fear", people would be inspired that she's not giving up, that she has so many gifts the world needs and she offers them to her corner of the world everyday.
When death comes for a person, your person, your person you cannot live without, it changes everything. Everything. Who you are at your core is not who you were. It takes time to figure out this new person you are, and I am still in the middle of that unpleasant exploration.
One aspect of surviving a loss that the vast majority grievers experience is this awareness of the reality of death. It doesn't just happen to other people. It happens to you. It happened to you once and now you know how easily it could happen to you again. It's a hyperawareness that does not reflect reality, but does reflect the reality inside a griever's brain. In Harry Potter and the Deathly Hallows, Harry asks Dumbledore, "Is this real? Or has this been happening inside my head?" Dumbledore replies, "Of course it is happening inside your head, Harry, but why on earth should that mean that is is not real?" In the book, and in life, this is meant to be a reassuring statement of otherwordly experiences. But it's also true in grief. What is happening in my head and my friend's head in the swirling rapids of grief is very real. It is also very terrifying. It can lead to the dreaded "spirit of fear". (Please read that in a sarcasm font.)
If you have spent more than ten minutes with a group of American Christians, you will be familiar with the phrase "spirit of fear". A spirit of fear is when you have fears about certain things or many things, and it is generally believed that you are just holding onto that fear for no good reason and not "giving it to God". My real and only beef with the "spirit of fear" is that it is viewed and judged as one of the worst sins, something the person in question has invented and refuses to let go of.
So my friend has a spirit of fear, so I have a spirit of fear, so freaking what? Some people have a spirit of lust or greed. Some people have a spirit of anger. Some people have a spirit deceit. But heaven forbid anyone have a spirit of fear, that must mean they aren't a true believer. Who decided that a spirit of fear is the absolute worst attribute?
What is someone supposed to do about a spirit of fear anyway? My friend prays about it. And then she prays about it again. And then she prays about it again. But I guess she must not be praying right or not really believing she can be healed from her fear, otherwise that would have happened by now. (Again, that last sentence was sarcasm.) These are the things she is told.
You know, I've seen about 85,000 times on the internet that in the bible it says, "Do not be afraid" 365 times, once for each day of the year. So that must mean that we're really not supposed to be afraid (sarcasm). I have not checked to see if this is accurate and I care 0% how many times it says to not be afraid in the bible. I mostly find it irrelevant because I suspect in the original Greek/Hebrew/Aramaic texts it is likely a slightly different number due to the translations, and translations of translations, etc. But since it tells us or specifically a person in the bible to not be afraid or to have no fear so many times, I actually think that speaks to how human it is to have fear. To how real fear is. If God's gotta say it that many times, it must be pretty common to be afraid. It must be a human reaction to trauma and life experiences.
And what do you know? All these thousands of years later we're still just humans having human experiences. We still experience the weird, the horrifying, and the unknown. And we still react with fear. And God still tells us to not be afraid. And for some people it's still a struggle. I suspect it is for way more folks than will admit it.
I listened to a pastor speak once and even though she had been through some pretty rough stuff, she said that her faith was a gift from God, that she doesn't struggle with belief. I found this to be a beautiful acknowledgment of our differing spiritual experiences as humans. She did not claim that she had a great faith because she's a great believer or she just has this whole Christianity thing figured out. She said it was a gift she had been given. It makes me think of my friend who has the [dreaded] spirit of fear. She has not been gifted with peace in faith. It's a struggle. And God love her, she keeps wrestling. But she has been gifted with compassion, love, justice, caretaking, perseverance, and a great sense of humor to name a few of her gifts. I wish instead of directly or indirectly calling her out for her "spirit of fear", people would be inspired that she's not giving up, that she has so many gifts the world needs and she offers them to her corner of the world everyday.
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