http://www.timesandseasons.org/?p=3057

(Note that DB just re-released the book–go get it!)

My oldest was diagnosed with autism shortly before his third birthday. For a long time the Lord and I were not on speaking terms. I have never been so angry and hurt in my life. I felt like you did Patricia – I did everything I was supposed to and still this happened. And this isn’t something you’re supposed to say in Sacrament or to your LDS friends. When my husband’s siblings were told, they went on about what a great miracle it was and how we were so blessed to have this, that God had honored us in some way. You’re not supposed to be upset. You’re supposed to have faith and understand the plan and get over it. No one wants to deal with your messiness.

What I came to believe is not that God micromanages – I don’t believe He caused my son’s autism, but that He knew it was going to happen. Heck, even I somehow knew at an early age that it would happen. As a teenager I discussed this difficult son I knew I would have. I knew there would be behavioral issues, I didn’t realize it would mean developmental as well. I never even considered the possibility.

And it felt even more ironic since I had grown up with a sister with severe mental retardation due to a genetic fluke. I felt as if I had already had this particular test and had no desire to go through it again.

Of course it is different as a parent, and my son’s condition is much different than my sister’s was.

I am looking forward to reading the rest of your story. Thank you for it.

I get that, since whenever I open my mouth to talk about these things, I relive them.

I’m in awe of the way that you’ve been able to express some of the meaning and the search for meaning in your experience, Patricia. Having a child with a disability is such a complicated thing and strikes so deeply into the meaning of everything you’ve ever believed. I know that for awhile, faith words and religious language stopped having meaning. They were just noise. Eventually the words and experience of faith have come back but somehow in a different form.

One of the things that has helped me cope has been to pass along the gift that those two women gave me. As I’ve gotten to know other mothers expecting or raising heart babies, the discussion and listening and sharing fears and tears has been healing to my soul. Not in any simplistic way; it is also a very complicated experience.

East Coast, thank you for your generosity. Maybe, if we light these warm lights, it will help reverse global cooling. ;)

I remember at times during my family’s ordeal seeing others receive blessings and wondering why we had been overlooked or left in the dark and cold. It turned out that I had to back up to take in the bigger picture, something that’s admittedly hard to do when you don’t know which way to turn or are overwhelmed with grief and loss (in this case, loss of the future my daughter and I might have had together, loss of my family’s secure future, and loss of my future overall however I’d imagined it — you know, famous writer, prof. at BYU, etc.). When I managed, I could see events that had happened or people who had come into my life that could help me find an opening, and I could see I needed to give life time. M. stabalized somewhat in condition when she was about six years old. Life is always precarious, but after six years we were in a better place. Good enough to have another baby, even though there was some risk that the CMV, which takes up permanent residence in your body, would flare up again and endanger a new pregnancy. Also, having both M. and a new baby would pin me down but good. But we had wanted more children. When M. was born and her troubles came to light, we didn’t know what it meant for bringing more kids into our household. What it meant for them, what it meant for us as parents and especially for me, whom the responsibility would pin down completely. When the time arrived, we took the leap.

I was 40 when I became pregnant again. We monitored this new pregnancy closely through ultrasound. When the tech announced the baby was a girl and that she appeared “vigorous,” I thought, “I am comforted.”

Yet after everything that’s happened, I’m aware that even this gift of a healthy daughter is not wholly given. Everything can change at any moment.

Before M. was born, I believed myself and my family safe in the gospel and in the culture I was born into. Now I see that part of the gospel’s power resides in the energy and means it provides for dealing with the fallout of our wielding of human agency within the matrix of unknowingness that encompasses us. Back when my future changed in the blink of an eye, I had to reimagine every single strand of meaning I’d woven into my tapestry of belief. Now I have a new tapestry, a better one. But even that one I stand at the ready to lay on the altar with my broken heart, should the necessity arise. Giving it up right away rather than trying to hang onto it even as it falls into tatters moves things along more quickly.

About a year and a half ago I decided to enroll my preschool-aged daughter in gymnastics. I had the choice of two gyms, one very close to our house and one a fifteen-minute drive away. After visiting both, I went to sign her up at the close gym. As I waited in the office I had a really bad feeling so I turned around and walked out and signed her up at the other gym. I assumed that the feeling was for my daughter’s benefit…you know, she would have broken an arm or something. I was wrong.

Fast-forward a few months. I’m now five months pregnant and have just been told a day or two before that our youngest son has hypoplastic left heart syndrome. It is one of the most complex and difficult-to-treat heart defects. It has only been treated for about twenty years. About half the parents with this prenatal diagnosis choose to abort the baby. Another percentage decline treatment and the baby dies shortly after birth. The development of the treatment is an amazing story, but is still relatively recent and one of those amazing conjunctions of science and medicine and pure art that requires a particularly talented surgeon and hospital team. If you choose the surgical option the baby needs to be born and treated at a major medical center and go through at least three open heart surgeries with all the risk that entails and who knows what long term prognosis to live life with half a heart. A little overwhelming.

Trying to cope with all the information, I got to gymnastics and sat down as the children started their routine. A little while later another mother sat down next to me. I’d talked to her briefly before since she is from the Eastern European country where my brother-in-law served his mission. She innocently asked me where the baby was going to be born. When I broke into tears at that question, she didn’t bat an eyelash but put her arm around me and probably handed me a tissue and asked questions and let me know that many mothers have such experiences and shared her experience with losing her daughter to one of the -encephalies.

About a week later my husband and I were going to drive down to the children’s hospital for an appointment. I knew that one of the other mothers at gymnastics had a daughter in some sort of treatment and was often at the hospital. I asked her for directions and parking information. (Her daughter has leukemia and just finished chemotherapy this past month.) She provided me with lots of information and over the next months taught me all the ropes for living at the hospital and dealing with doctors and we discussed living with long term fears and germ control for a medically sensitive child and all the other things that go with having a child with a long term diagnosis.

Between these two wonderful women and our regular visits every week at gymnastics, I made it through the next four months. It is hard for me to express what it means to have this experience and the tender mercy of having a support system ready and waiting for me when Danny was diagnosed.

The blessing hasn’t stopped either. Last week I was missing sleep over interacting with a friend whose son just died after his first surgery for the same condition as my son. As I agonized, I got a phone call from the second mother and we discussed what it means to have friends whose children have died from the condition that your own child is living with.

As I’m typing this story, a song came on iTunes that has the following line, “I thank the Lord that he did shine his light through you, that your life touched mine.” That sums up many of my thoughts about this experience.

I’ve had friends who lost a child to RSV and have another that is seriously disabled by it. Just after I met them someone brought a child with a raging case of RSV into the nursery where Rachel was.

the fallacy of the tidy equations we set up for ourselves for the sake of comfort aside, I did not risk Rachel, having already experienced too much risk.

Though we don’t have the terrible infant mortality rates of two centuries ago, like those experienced by Emma and Joseph Smith, there are still a large number of families with children afflicted innocently by some of the worst things that can happen to human beings.

Too many it seems to me, too many.

But, it is life.

It is over the top, it is totally over the top. Yet there it is. And speaking of coincidences, the friend I report calling when I needed advice? The one whose son had Fanconi aplastic anemia? She happened to call when I was writing the post. She calls every two or three months, but this call was especially timely and important because I needed her help writing this. I was able to ask, “Did you feel like you were living an underground life?” “Is this the way the way you remember it happening?” etc. We talked for two hours. She understood when I said writing this post disturbed me and my husband, too, when I read it to him. At the end, we expressed our gratitude for the remarkable eight or ten months we spent together in Tucson. I had gone down there for grad school w/out arranging for a place to live, everything I owned in my ’67 station wagon (half of which worldly goods melted in the Arizona sun) and my Siberian husky. I bought a paper and circled her ad for a renter. I dropped some quarters into a pay phone and called. She accepted me and my dog.

Her son, Travis, who had the FAA, was eight at the time, small for his size but a fireball. Little did I know that when I got the studio apartment, I got Travis, too. He boobytrapped my porch. He kicked my door, demanding I let him in. Once, after listening to half an hour of pounding while I was trying to study, I opened the door and threw water on him. He stood there, a look of surprise on his face, which was followed quickly by a look of delight. He used to climb up on my back and lay there while I played solitare Scrabble. He raided my fridge and drank up my fruit punch. I couldn’t believe how much life was in that boy for all he had been through and I wound up loving him deeply. I consider those months I spent living with Marilyn and Travis an apprenticeship that prepared me to roll up my sleeves when Mattea was born and find out what was what. This last time we talked, she and I wept at the miracle of God giving us to each other. And the miracle of giving us Travis.

Travis died a few years back on my youngest daughter’s birthday. Cirrhosis from that hep C he contracted from the transfusion, combined with a doctor’s poor judgment.

One day I played freeze tag in the park with Travis and his little sister. I’d frozen the sister and was hovering over her, making it difficult for Travis to reach her to unfreeze her without getting tagged himself. “You can’t guard angels!” he said. It was a phrase I’d never heard before. It felt then like a title of a poem or the moral to a story.

Back to this post. Thanks, folks, for your encouragement. And I’m very grateful some of you shared bits of your own stories. I know they’re just bits, because these kinds of stories are sooo big. Anybody who’s already commented who might feel the desire to add more, please do. Anyone else who has a story they would like to show parts of, please, please, you can here, I (and maybe others) need to hear them.

Kristine, your comment followed me out onto the cliff this a.m. when I went to hang with the swallows, swifts, and eagles for a private Earth Day celebration. Your insightful invoking of the “Father, forgive them, for they know not what they do” moment in the scriptures raised to mind another model Christ offers for doing the needful thing: leaving the ninety and nine to go after the lost one. Nowadays, that’s not an economical model. Maybe it wasn’t back in Christ’s time, either. But it’s the productive, creative, epic model. Epic isn’t economical either. Insurance companies, as CS Eric points out, won’t pay for “epic.” It’s the Christian expedient, the action contrived to meet the depths of the need.

mel: Thank you for reminding us that molecules count. I’ll be more aware of the realities of peanut allergies now and be more careful myself. We keep up a similar vigilence in our household for illnesses that pose special threats to Mattea, so I get the worry (exhausting!) and the OCD concern. And I agree, I think it is all bigger than us — and I like that, I’m grateful for how raising Mattea has defined the frontier of who I am so I know which way to push into. People who live with mortal crises, if they are to have any chance at all, either for resolution or redemption, learn, I think, to cross that frontier to look for what they need, to get beyond and over themselves.

Raymond touches on two elixirs for our culture where these hard matters are concerned: kindness and love. I read a mystery novel once, pretty bad in most ways, but it contained one good line. That line expressed the belief that kindness is one of the highest forms of intelligence. Having been through sixteen years of uncertainty, desperation, vulnerability, etc., I’m here to say that it’s true. Whenever someone showed me genuine kindness, it solved my Rubiks cubes of anxiety, confusion, and loss. Also, genuine kindness had a powerful effect on Mattea, enabling her to test new ground without having to deal with hair triggers on old defense mechanisms.

As for love … well. I’m actually getting to that.