Sick Children, God, & Waiting

There is nothing in the world that makes you feel more vulnerable and useless than the news that your child is sick. Sick isn’t even the right word. It’s not an illness. It’s not caused by a bad choice of entree at dinner or some exotic, ill-advised travel plans. Defective. Not long after we found out that she existed, my daughter developed a defect in her heart. Just as we saw her heart beating on the ultrasound, it was already misshapen. Twelve weeks later we discovered it on ultrasound. The technician said she saw something wrong and wanted the doctor to see. We waved it off. “It’s nothing. She’s okay.” The doctor came in and took a look with the machine and brought us into his office. Him moving us was the thing that got us both worried. “Never any good news in the office” we both agreed.

We then saw a specialist, whose bubbly personality clashed with the words she was saying. “Severe. Life threatening. Emergency Interventions. Surgery.” I don’t know if they’re trained to go to the worst of all outcomes and stay there or if she saw something on the scans that pointed to the worst outcomes. Outcomes. That’s the medical word. Good outcomes, bad outcomes. Reminds me of baseball for some reason. A lot reminds me of baseball, to be fair. It’s too early to give odds. We’re halfway through the pregnancy, but its too early to tell if my daughter is going to survive birth or the days after. Or the years after.

She is safe in the womb. My wife’s heart does most of the pumping for her. Her lungs do all the breathing for both of them. She feeds and nourishes the baby. We know so much about her already. She loves cheese and strawberries and pickles. Not at the same time, though I’m sure there will be strange cravings and combinations ahead. Orange juice makes her dance. She has a beautiful face, or at least, she cuts a good 3D ultrasound image. We’ve named her. I wanted people to have a name they could say when they prayed for her. “Baby Hudson” feels so impersonal. If she dies, I want her to have a name.

The waiting is the hardest part - Tom Petty

She’s most active in the evenings, when we are sitting in bed, reading or watching something. I’ve only felt her move once. Most of the time, her movements can only be felt from the inside. It was a few weeks ago as we were going to bed and Mrs. Hudson took my hand and placed the palm on her belly and I felt these small, tickling sensations right in the center. I’ve been rubbing that part of my hand with my other thumb since we got the news, trying to recreate the feeling. We have to take this one day at a time. Every day, she is growing. Every day, she is kicking and punching and craving. The longer she’s in there, the better off she’ll be. Big babies fair better than small ones. They won’t even intervene if she’s born before 28 weeks. We wait and we pray.

I’m not angry at God. I don’t say that to sound pious or better than anyone. I’m not better than anyone. My friend

The Prudentialist

says he is the worst sinner he knows. I like that. I say it, too, usually crediting him. I don’t know what goes on in the minds of other people. I don’t know how many people have cursed me and wished me dead and maybe even thought about hurting me and my family or someone that I love. But I know how many times I’ve felt and thought those things. I know how many women I’ve lusted after, even just a glance and a thought. I know how many times I’ve been wronged on the road and wished I could run the driver off the road. I know how many rooms I’ve sat in, looking everyone over and picturing how I’d kill them all. I am the worst sinner I know.

But it is not my sins that caused my daughter’s plight. Not long after we got the news, I read John Chapter 9 aloud to my wife ( and baby, who can hear now in utero).

“And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

I must work the works of him that sent me, while it is day: the night cometh, when no man can work.

As long as I am in the world, I am the light of the world.”

I question why the works of God should be made manifest in her. God speaks to my wife. She was of the new age for a while before we became Christians. She let all kinds of voices in her head, ones that told her things about the past and the future and other people. It wasn’t until we came to God that she learned which was his voice and which was something else. Discerning which voice is God was a challenge for her. You’d have to ask her about it. The best she gave me was “God sounds like God. When I read scripture, I know his voice. I can tell when it’s him and when it’s not.” She doesn’t always get these messages from God. He doesn’t tell her which shoes to wear or if she needs a hat outside. And she is not the most obedient child of God. She told me of a time when God told her not to eat leftovers that had gone bad. She did not listen and paid the price later, a mild stomach ache. God told my wife that our daughter would be okay. I cannot think of a time that she was sure it was him and she was wrong. I lean on her to be sure and that strengthens my faith. I wonder if it weakens my marriage.

It’s not right for a man to depend on his wife like that. She is vulnerable right now, more than I am. The baby is growing inside of her. No matter how I feel about what I could have done to prevent this, she must feel that more so. Even when the doctors tell her it’s not her fault, I know her. I know she feels she’s done our daughter wrong. We tried for over two years to conceive. She worked so hard to get her body right, to be a good vessel for the miracle of creation. Endometriosis is a horrible thing. A cyst was growing on her ovary, threatening every day to twist and cut off her eggs from the rest of her body. If that wasn’t bad enough, the cysts will produce hormones and she beat it with diet and exercise and faith and herbal supplements. I admire her so much. For my part, I did jack shit. I never blamed her for our trouble, but I did little in terms of taking responsibility for them. I am the worst sinner I know.

My cousin sent the family groupchat a picture of my mother and her siblings as children. I look just like my mother. People who’ve seen the 3D ultrasound say my daughter looks like my mother, too. I don’t see it. I see a vaguely human face. I hope she looks like my wife, who is the most beautiful woman I know. I thought this before she was my wife and before she was my girlfriend, and when she was just the friend of a friend whom I tried to seduce in bout of drunken courage.

“I come from a long line of death” - Norm MacDonald

I fear that I am cursed. I’ve been to a lot of funerals. More than most people in their early 30s. Off the top of my head, I can think of at least ten family members and we’re not talking about some obscure, twice removed Great Aunt I met when I was in diapers, either. My cousin passed just the other day. She was like my sister. Her mother raised me and she babysat me and she died too young from a rare disease. I’m afraid that her mother now hates me because I can’t attend the service. She doesn’t know about the baby. No one in my family knows, except for my father who feels as helpless to support me as I feel supporting the baby. It’s not our way, I guess. Mrs. Hudson hates my father, or at least hates that he is not able to be there for me like she wants him to be. There will only be more funerals. That’s the rub about big families. A lot of people you love are going to die. I lay awake at night, worried that I am going to out live everyone I care for. I fear that I’m cursed.

I wrote a scene in my first book where a woman dies in childbirth and the baby came early and he dies as well. I regret writing that. I think I’m going to try to do happy endings going forward. Pessimism is cowardice. I used to think that it was “real” and therefore, worthy. But pessimism is never held to account. No one ever looks at a pessimistic prognostication and goes “man, that guy was sure wrong.” They are forgotten and therefore, forgiven. Optimism requires courage. Poetry is an optimistic art form because bad poetry, like misplaced optimism, is gay and cringe and you will be laughed at. But when it’s good, it’s beautiful. It’s life affirming. No great work of art was pessimistic. I think that may be a qualifier for greatness. It must feed the human soul’s yearning for optimism. Maybe it’s an American thing. But most American optimism is misplaced and perhaps fake. Show me Russian or British optimism, and I will show you great Russian and British art. I say this with certainty and therefore, I am correct.

I was praying for my now deceased cousin and reading the book of Tobit, asking the Archangel Raphael to heal her before I went to sleep. That’s one thing I asked about Protestantism when I attended non-denom churches. If the bible is the most important way we can know God, why does the KJV (Or you can insert whatever translation you prefer) not include several whole books. I’m sure there are good reasons, or at least reasons that one can understand. I just like to stir the pot. There are Protestants and Catholics and “vaguely Christian” people and probably some agnostics and pagans who will see Heaven before I do. I don’t mean to bare false modesty. I believe that. Doing the sacraments does not guarantee salvation. But anyway, the Archangel Raphael. “God has healed”. Maybe he does speak to me.

I wish I could spit in some dirt and rub it on my wife’s stomach and heal my daughter. If I was going to be a saint or a wonder worker, I probably would have gotten started on that a long time ago. Apparently asking if I can spit on my wife and rub dirt on her has led to some unforeseen consequences. Apparently she did the same to a boy she liked in 4th grade. Apparently my daughter is going to be a bully.

It’s messed up how many doctors want to kill my baby. They talk about termination and bring it up a couple times per visit “so that we know all of our options”. They talk about letting her go after she’s born, keeping her comfortable, but doing nothing to save her, as if that is somehow better. I was against abortion before, now I’m militant.

I don’t know how to end this. I don’t know how this ends. This wasn’t meant to sound like a pity party, but yeah, this hurts bros. This is a round about way of saying that I’ll be away for a while. I’ve told several people that I’ll be back. Part of me wonders if I’ll get used to being offline. Maybe I can re-normify myself like those women who sell their butthole pics online and then try to become virgins again. I’ll be selling our house soon and moving us far away to get the best medical care for the baby that we can. I hate to leave, but there is no other option. We love our town and our church and that’s more than most people find these days. My wife asked me if it was worth it to move when there’s a good children’s hospital here. She’s playing devils advocate. She just wants to hear that I am all in. “The baby may die despite the move and the better hospital.” “I wouldn’t be able to live with myself if I didn’t do everything I could.” She smiles and rubs her belly. The baby starts kicking. It’s going to be okay.