One Day, I Will Figure This Out

It's hard to believe that Jack was ever that tiny. He was five days old in that picture, and weighed just a few ounces over five pounds. He was slow to gain, and the hospital almost made us stay another day because he wasn't putting on weight the way he was supposed to. He became jaundiced and had to spend a night under the lights, the blindfold covering half his tiny face. It really was the best of times and the worst of times; I was so in love with this tiny, tiny person, but it was scary to be in charge of caring for him. He couldn't do anything for himself and he was so very needy. I felt fiercely protective of him, and determinedly pumped bottles of breast milk in the middle of the night for months and months. He was small and needed the very best calories; I could sleep later. Five years later and a lot is still the same; I am so in love with Jack, but it's scary to be in charge of caring for him. He's not tiny anymore. He weighs 55 pounds and is tall, muscular and fast. He draws and sings constantly, works hard to overcome his many fears, bravely accepts his wheat allergies and tries new foods. He has grown so much and in so many ways. But something is wrong. Recently, Jack has been getting migraines. A lot of migraines. From the time he had the vocabulary to articulate it, he has frequently complained about his forehead hurting. He loses his appetite, the pain gets worse, and then the vomiting starts. After a good night's sleep he wakes up feeling much better and then eats like a horse. This used to happen two or three times a year. In June I noticed it was happening more often, so I started writing it on the calendar every time he got a migraine. We have a routine now. When he complains that his forehead hurts, I give him Tylenol and Motrin simultaneously, make him drink water and then have him lie down in a dark, quiet spot. This is usually enough to pull him back from the brink, and after a 30 minute rest he's good to go. Most of the time we can avoid getting to the vomiting stage. With the last migraine, we weren't so lucky. It was 91 degrees and, despite my best efforts, I think his body couldn't stay hydrated. We were at his grandma's and it was late, so when he told me that his forehead hurt I decided we should just head home. I didn't have any medicine with me, so I hoped he would just fall asleep in the car. Three blocks away from grandma's, he threw up. That's what the bucket in my back seat is for. After a good purge, we made it home without further incident. He was asleep, so I put him to bed without waking him up to take any pain medication. At 2:30 a.m. he came into my room crying, saying his forehead still hurt. He'd never woken up in pain before. I gave him his usual cocktail and some water, then got in bed beside him and massaged his scalp. I thought back to how many times I'd written "migraine" on the calendar and realized that this was his fifth migraine in a month. I lay next to him in the dark, unable to do much but be with him while we both waited for the medicine to work. It usually takes about 20 minutes, which can feel like an eternity when your child is suffering. Plus, 2:30 in the morning is a Worrisome Time, the time of night when everything is menacing and this is not just a headache and what his wrong with my son I'm his mother I should know why can't I figure this out and HOLY SHIT if anything happens to this kid I will want to die. I hate caring about another person this much. The next morning I make an appointment with his doctor. In the exam room, Jack is chipper and talkative. He likes being the center of attention, and his doctor is a really nice guy. I go over Jack's migraine history, explaining that he had episodes of vomiting without apparent illness from the time he was about two. I think he had his first migraine the day we went to buy a Christmas tree, and he puked all over Aaron at Azteca. The next morning he was fine, and we didn't think much of it. Kids puke all the time, right? Now that I know what his migraines look like, I realize that's what was going on. I tell the doctor about our current management plan, how I make sure Jack has something to eat and drink at least every two hours throughout the day. As soon as I say it out loud, I know it sounds odd. Every two hours? What is he, an infant? Clearly, no. So why do I still have to feed him like one? I go on, explaining that we avoid things like big, loud parties or crowded places; we can't stay at the beach too long on a sunny day because it's too bright for Jack; he gets carsick easily; I never leave the house without food and drink in the car; if we take a trip, the first thing I pack is the bottle of chewable Tylenol and Motrin; his babysitters know to give him a glass of water every hour. I know this is not standard issue care for most five year-olds, but hearing myself say it out loud to another person really underlines it for me. Jack was difficult to care for from day one. He didn't nurse, cried inconsolably for months, was unhappy in new situations. All babies are work, but I didn't realize how much more work Jack was until my sister told me "Your one baby is more work than all five of my children put together." So I guess it didn't seem that odd to me, this frequent feeding and watering and having of medicine and buckets. Jack is high-maintenance; it's just how he rolls. But this has gotten to the point where it is not okay, is past being explained by saying things like "he was early, lots of early babies have colic." I realize that Jack has a very, very narrow range of being in which he thrives and if anything comes along to tip the balance, it triggers a migraine. The doctor asks me if Aaron or I have ever had migraines. I tell him never once in either of our lives. He tells me that it's unusual for a person to have chronic migraines without at least one parent having them in their history. He also tells me that it's extremely rare to see chronic migraines in a child under the age of seven. He gives Jack a bunch of little tests; close your eyes and touch your nose, balance on one foot, raise your eyebrows, squeeze my hand. Jack does them all perfectly, and I breathe a sigh of relief when the doctor says that all his neurological functions look good. I cross Brain Cancer off my list of worries. The doctor tells me that I'm doing a great job, and to keep doing everything we're doing; treat migraines as they come, and do our best to avoid the things that trigger them. We will see a neurologist and discuss preventative treatment. This makes me nervous because a lot of prophylactic migraine treatment involves anti-depressants. They are given in lower doses than they would be for the treatment of depression, but I question the wisdom of putting such powerful drugs into the body of a child who clearly has a sensitive system. I want to know why he keeps getting migraines, not just suppress them.

For now, we wait. We haven't seen the neurologist yet, so I'm doing what I normally do and trying not to get too worried before I know what it is I should be worried about. When I feel like I might start freaking out, I make muffins. Wheat-free, dairy-free raspberry muffins. They are warm and soft and yielding, and for fifteen minutes I am comforted. Then I go back to worrying, because I can't make muffins all day.

One day I will figure out how to manage this whole parenting thing, how to balance the fear of what could be wrong with the faith that everything will turn out alright, but I'm not there yet. I struggle not to resent my attachment to my kids, these little people who can bring moments of such joy to my life but who make daily living so messy, so loud, so fraught with sibling rivalry and screaming and general unpleasantness and threats of penile violence in public. After I kiss the boys good night, I survey the day's damage to the house and begin the never-ending work of picking up the living room. I scoop the blocks into a basket, put the books back on the shelf. I pick my purse up off the floor and hear the rattle of pills inside, the medicine I almost always carry. It reminds me that I need to put a clean bucket in the car before we go anywhere this weekend. Because for now, that's our normal.