Spirituality in Crisis

Spirituality and religion can be touchy topics and I don't want to alienate any of my readers, but for many people, connecting with their spiritual side is an important part of the coping, care, and healing process. I promise not to proselytize on my blog (that's not the point and, besides, whatever your beliefs are is perfectly okay with me), but since it's supposed to be a chronicle of our family's experiences, our spirituality will inevitably be a part of our experience of this journey. So, here's the post tackling spirituality in crisis.

I have a bit of a patchwork quilt of a spiritual background. Born into a maternal family proud of its Catholic heritage and adopted into a paternal family strong in their Episcopal faith, I split my childhood between the two religions. To this day I have a preference for some of the Anglican prayers and sometimes accidentally say them during Catholic Mass, and I still consider my father's church part of my family. I admit that I miss their musical arrangement of the Doxology. It's prettier than ours. A crisis of faith in my teens and twenties led me to try out as many religions as I could, eventually leading to serious study of Buddhism. I still have quite a fondness for world religions and Campbell's archetypes, but today I call myself a Catholic with a deep appreciation of Buddhism. My husband, I think, calls himself a Buddhist with an appreciation of Catholicism. Call us Southern, but we both believe in prayer and miracles.

The hospital where I work has a small children's chapel that has always been one of my favorite places to visit. My whole life, I have been drawn to numens of various sorts, be they quiet groves or towering cathedrals. I'm almost convinced that I would have become a nun of some kind if I had never married because of how much I wish I could live in a church and attend Mass all the time. It's just so comforting and centering to me to be in a place where human beings gather to pray and meditate. I often find my way down to the hospital chapel over lunch break where I sit and pray for our patients. Sometimes I pray for my own patients and sometimes I just open the prayer request book and pick a few recent names - those can be the most difficult because they are usually letters written by parents for their children. It reminds me of the connection between us all and of the way that each of us are faced with times of fear, suffering, and hope, and of the spiritual crisis that so many face during illness. A hospital is a place just full of human emotion and full of people praying, worrying, hoping...In a way, it's like working in a cathedral except that we have no formal ceremonies of celebration and our rituals consist of taking vital signs, charting rounds, changing linens, rinsing bed pans... I try to make my job a working meditation and, with 12 hour shifts over night, I often have quite a lot of time to pray. This month, it's been harder to think of my patients and most of my prayer has been selfish.

When your child is sick, it can be so hard to have faith. It was hard for me, even though if anyone should have unshakable faith, it should be my family! You see, this is not our first journey with a frightening diagnosis. At 23, my husband was diagnosed with brain cancer - a grade 3 anaplastic astrocytoma. Over the next 5 years, he came through two brain surgeries, chemotherapy, and radiation and today, miraculously, is none the worse for wear ...except that he now has a great excuse for forgetting to take the trash out! Cutler's brain cancer deepened both of our spirituality and was, in the end, an experience that we are thankful for because of what it taught us about living and about faith. It also served to make us pretty loyal to the skills of the professionals at Duke Hospital. However, when I learned what "Adrenoleukodystrophy" was, I'm almost ashamed to say that I found myself struggling with a selfish faith. I stopped to pray for others, but mostly I was too consumed with my own worry to be very diligent or to think very hard about the suffering of my patients. When I went down to the chapel, I said a general prayer for the loved ones of all of the parents who came here to pray, understanding now how they must feel, but I spent most of my time thinking about my own son. I didn't want to carry my Sorrowful Mother rosary, my favorite because of the beautiful, old frosted blue beads and the lovely, delicate picture of Our Lady. I didn't want to think about the possibility of having certain of those sorrows in common with Mary. I caught myself bargaining:"God, if You make him okay I'll volunteer with the hospital ministry...." "Mother, if you intercede on his behalf, I'll take Third Order Vows..." (which weren't even fair bargains since I've been considering them, anyway!). I'd catch myself and say "I'm sorry. Even if you don't, I'll try to do it. I know You don't bargain."

Maybe I sound like a religious nut right now (maybe I AM a religious nut). It strikes me  that perhaps I should be concerned that I'm making others uncomfortable with all this prayer talk. Maybe I should take a second again to reassure you that despite whatever neurosis I may or may not have centered around spirituality, it really doesn't bother me what your own beliefs, non-beliefs, and practices are. I really don't intend this to be a judgement of anyone else's beliefs, just a chronicle of my own struggles with faith during this time.

It occurred to me that maybe I should be mad at God. After all, this is really NOT FAIR. Haven't we paid our karmic debt when it comes to healthcare? Haven't we shown how grateful we are for Cutler's health? Didn't we learn a whole lot? Don't I work in healthcare now? Don't I volunteer all my free time with the rescue squad? Aren't I paying it back?! But, despite thinking that maybe I ought to feel angry, I didn't really. I understand the people who do feel angry and anger is part of the coping process, it's totally normal, but I didn't feel angry. Not really. Okay, a little flabbergasted and annoyed -what more?! - but not ANGRY. I don't feel angry because I know that God doesn't cause suffering. Now, Pat Roberson might blame the bad things that happen on the feminists, the pagans, and the gays, but I'd like to believe that I know better. I don't believe in a God that causes suffering; I believe in a God that is love.

My favorite quote is from Thomas Merton and he says "Souls are like athletes that need opponents worthy of them if they are to be tried and extended and pushed to the full use of their powers and rewarded according to their capacity." I believe that suffering is just a part of life and that it's meant to bring out the best in us, to bring us closer to that which we call "God." Still...Still, even knowing this, I do have moments when I am frightened that I am being punished. Now, think of how egotistical that sounds! That God would cause my child to suffer to punish me for being a bad mom, for not being good enough. Rationally, I know that this is ridiculous...but rationality and emotion don't usually go hand in hand. Despite feeling a little guilty for being so consumed by worry, feeling so frail in my faith, I know that THIS IS OKAY. My sensei back when I was studying Buddhism told a story about a man who said that he was struggling after his wife died. Buddhism teaches non-attachment (surprise! So does Catholicism!), but he was suffering a great deal, missing his wife, and didn't find it possible to not be attached right then. His sensei said to the man "That's okay! You're only human! Don't get too attached to non-attachment."  I'm only human. I don't think God expects perfection; I think that maybe that we sincerely want to be more perfect is enough. I guess what I'm trying to say is that I'm okay and you're okay. Whatever you're doing, wherever you're at, you who are struggling with crisis, with faith, who is feeling imperfect, who is failing... Whatever it is you believe, you're okay. We're all only human.

A Day for Hope

The phone was already on my lap when it rang this morning. We'd been waiting for this call since Saturday and I recognized the number right away as Dr. H, Gabe's endocrinologist. Her voice was bubbly when she said her hellos and good mornings and I found myself wondering if it was because she had good news...or maybe because she had bad news and was compensating with a cheerful tone...or maybe it was because she's really a cheerful person in general and the news she was about to deliver had nothing to do with her tone of voice.... I didn't have to dissect her motives for long, though.

The preliminary report on Gabe's MRI had come back and the verdict is that his brain looks.......... totally normal! I took my husband's hand as she kept talking, trying not to sob with relief into this lovely doctor's ear. Saturday morning, Gabriel went to Duke Hospital for an MRI. He was in that room for an awfully long while, and I sat there, rosary in hand, and prayed the entire time, half-convinced that it was taking so long because they found something they wanted to look harder at. Over the rest of the day and Sunday, I worked on coming to terms with hearing the worst.  I dared to hope that the damage they found would be minor, despite Gabe being on the upper age limits of diagnosing childhood ALD, and so a bone marrow transplant would still be an option. I barely hoped that there would be no damage at all. I thought about how we would cope (IF we would cope) if they found too much damage to make a transplant possible. When friends asked me what I thought, I told them that I thought there would be demyelinization, but thought it would be less severe because _____ and here I'd list the reasons for and against my hopes as if by quantifying them it would make  whatever the doctor said more easy  to handle. 

Sunday, I spent the day doing whatever the children wanted to do. Gabriel wanted to go bowling and when he asked for one more game, I was want to say no. But, then I thought "what if I never get to bowl with him again? What if today is the last time? What if he never walks again after the transplant? What if he goes blind? What if...What if he dies?" How much would I regret not saying 'yes' to one more game? So, we laughed and played, danced to the terrible "young and hip" music the DJ was playing, and we bowled one more game. Then, we went out for ice cream to Maple View Farm, a great local dairy farm where they raise their own feed, make their own antibiotic and hormone free dairy products, and all the dairy cows have names. I love them, and their ice cream is superb, but they make me think of a Portlandia skit every time I describe them. A clown named Willy made them balloon animals. Gabe chose a hot pink elephant- his favorite color and animal. Cai chose a dog and got a bonus capybara. It's Cai. Don't ask. By the time we went to their favorite park, a place with spinning cup seats and a jungle gym made of ropes, Gabriel was feeling sick, cranky, and tired, but Cai charmed him into playing by spinning him in the cups until he couldn't see straight and both could hardly breathe for laughing so hard. I took a million pictures and I wore sunglasses. That's a tip for you parents out there: sunglasses. When watching your children play together and worrying about the worst, sunglasses hide the tears that spring  to your eyes. We had fun together, we laughed, and played for all we were worth. But, it was bitter sweet. All the while I couldn't help but think "What if it's the last time? What about all those parents who never get to know it's the last time? What about the children who are taken suddenly and all the lasts are in retrospect, never planned? At least we have this." 

And yet, this morning, there was hope. The news was better than I dared to believe possible. Dr. H said that the bone marrow team will be going over Gabriel's MRI with a fine toothed comb. They have to give him something called a Loes Score, which is a point system for rating the amount of abnormalities and atrophy in the brain that goes from 0 to 34. A normal, healthy brain will have a score of 0 to 0.5. A brain with severe damage has 14 or more points. In order to qualify for a Bone Marrow transplant, the damage has to be below a certain number - usually an 8 or 9. For numbers higher than this, a bone marrow transplant may not halt the demyelinization process and may even make things worse. Dr. H said that she doesn't know at this point what the team will want to do and whether they would even want to proceed with a transplant if his brain is showing no evidence of damage. Thursday is the magic day when we find out what the team has learned from the MRI analysis and whether they think that Gabriel should have a transplant. 

I think I'd temporarily forgotten what it felt like to feel so happy or so grateful. Thank you all for your prayers, your kind words, your love. We're moved beyond belief by the sentiments of friends, family, and strangers. Not every parent who hears that their boy has ALD will get to hear such wonderful news as we heard this morning. Not every child with ALD is a candidate for transplant and not every mother will get to say that today is NOT the last day at the park. We're never promised tomorrow, but today we have hope. I pray that Gabriel's blessings can give hope to another family. Keep faith, savor each moment, say "yes" more often, and love harder. Today is a day for hope. 

Adrenoleuko-WHAT?

"What is Adrenoleukodystrophy, exactly?" That's the first question our friends and family want to know. We could point them to websites that give a general overview like this one  or we could point to more in-depth scientific articles like this one, but what they are usually looking for is a quick, bite-sized explaination. So,  we should go ahead and get that out of the way first thing. Adrenoleukosytrophy, or ALD, is a genetic disease caused by a mutation of the ABCD1 gene on the X chromosome. That sounds like we're about to launch into an episode of House, especially when it's said in the detached analytic tone I suddenly get when I start talking about the objective side of medical science. It's a pretty easy explanation  actually, and it only requires the most basic grasp of genetics. Do you remember biology class way back in high school or college? Remember drawing little squares that you filled up with lower case (recessive genes) and capital letters (dominant genes) to decide if Gregor Mendel's pea plants would be purple or white? How about the table you made to predict if some hypothetical baby would be blue eyed or brown haired depending on the genotype of its parents?

Yes? No? Ringing a bell? Now, think about the next (easier) part of inheritance you learned about, which was probably infinitely more interesting to you - meiosis (sex cell division) and baby making. What makes a lady zygote are two X chromosomes (XX). What makes a gentleman zygote is an X and a Y chromosome. (XY). When the mom's egg cells are made, they get one half of her genetic code in each cell. All that mom has to give are X chromosomes because she only has Xs. When the dad's sperm cells are made, each one gets half of his genetic code. Dad's cells are going to get either an X or a Y because he has one X and one Y. When the sperm and egg combine you have (Captain Planet!) a full genetic code for a baby:  Half are the dad's chromosomes and half are the mom's. Whether you have a boy or a girl, then, is entirely up to the daddy and which of his two chromosomes, the X or the Y, is inside the winner of this little swimming competition.

In this illustration, we're combining the two things we talked about above: Recessive genes and sex chromosomes. The mutation that causes Adrenoleukodystrophy is on the X chromosome. In this illustration, the affected X is colored red. A mother with one mutated X chromosome and one normal X chromosome, like me and the mother in the illustration, is called a carrier. She may show some symptoms of ALD, but these are usually mild and develop later in life. When she partners with a dad who has a normal X (i.e. does not have ALD), she has a 50/50 chance of passing the gene on to their offspring. Her daughters who inherit the mutated X chromosome will also be carriers. Boys with a mutated X have no other, normal, X chromosome to compensate for the damaged X (they only have one X and one Y), so they will have Adrenoleukodystrophy. Boys can not get ALD from their fathers because they got their X from Mom and their Y from Dad (if dad gave the X, he would be a she).

Adrenoleukodystrophy comes in a few different flavors. The childhood form is usually the most aggressive and Gabe is on the older end to be diagnosed with that as it usually is diagnosed between 4 and 10. The body is unable to break down very-long-chain-fatty-acids, leading to a build up of these substances that  cause a break down of the adrenals and the myelin sheaths of the nerves and brain. Untreated, or detected too late for treatment, this eventually will lead to a vegetative state and death. Other less aggressive forms might only attack only the adrenals or may attack the perpheral neurons, but might not attack the brain. Treatment during an early stage of this disease can halt the demyelinization and consists of bone marrow and stem cell transplants.  At this point, we don't know exactly what form of ALD Gabriel has. We are anxiously awaiting the results of his MRI to give us some indication as to the status of his brain. Gabe has an appointment on Thursday, February 28, to meet and be evaluated by his Bone Marrow Team at Duke.

From a human side, the outside, what does this actually look like? For Gabriel, it looked like a very small boy who never seemed to gain weight and was perpetually too short for the good rides at the fair or theme park, a great tan compared to the glow-in-the-dark complexions of the rest of the nuclear family, bouts with depression and anxiety, and increasing difficulty with ADHD symptoms. What finally led to his diagnosis looked like a very sudden and bad case of stomach flu. He wound up in the ER in an adrenal crisis: vomiting, weak, severely dehydrated, with ketotic hypoglycemia, a blood glucose around 30, an altered mental status, pale with blue lips and extremities, slow capillary refill, and having lost several pounds of water weight over the course of a day.

What does it look like from a parent's point of view? Terrifying. Like a giant hole of near-hopelessness. Like trying to be strong for your little boy while you just want to throw a giant screaming tantrum and cry yourself to oblivion. Like saying the rosary and "I love you" more than you've ever said anything before.