Weight Of The World

Today started with a second dose of IV drugs for my three-year-old daughter and the news that we were free to leave the Children’s Emergency Department once the infusion was complete. Laila’s pediatrician would arrange the remainder of the antibiotic therapy to treat the fleeting fever of unknown origin.

Fine.

My hip was threatening to jump ship after being subjected to a night of (non) sleep on an ER gurney. As far as Laila, the fever, and the long night in the ER, it seemed a bit insane. Kids get fevers. Then they go away. She didn’t even look sick. At three AM, while I was struggling to get comfortable, Laila was laughing and playing in her wheelchair.

But three weeks ago, Laila had a central line (a long-term, tunneled IV catheter) surgically placed in her chest so that we could deliver additional nutrition to our mysterious little peanut. Now it seems that none of the usual rules of common sense apply when it comes to fevers. After a whirlwind of a day that involved phone call after phone call between me, the infusion company, the pediatrician and the lab to try to avoid ending up at the hospital with my medically fragile child, we were sent to Big City Hospital so that Laila’s reaction to the drugs could be monitored.

Fine. Monitored. Monitored during her second dose eight hours later because no one actually got the medication out to our house so we were forced to spend the night. She didn’t turn bright red. Her blood pressure didn’t crash. Onward we go… to a different wing of the hospital to follow up with Laila’s metabolic specialist.

I was a wreck before we even entered the office. I don’t do well without sleep. After washing up in the public restroom, changing into my emergency t-shirt and throwing a bandana atop the rebel-formerly-known-as-my-hair, I looked more like a sullen teenager than a suburban soccer-mom, but it was the best I could muster. (*Note: I don’t actually fit in with the soccer moms either, although since I do live in the suburbs and have a kid who plays soccer, the description is technically accurate.)

But sleep or not, strange clothes or not, it was time to find out the results of a muscle biopsy Laila had performed three weeks ago to test for Mitochondrial Disease. Laila has been tested for everything—genetic disorders, Cystic Fibrosis, Dwarfism, Hirschprung’s Disease, Cornelia de Lange Syndrome—and probably about a million other syndromes and illness and disorders that my still-sleep-deprived brain can’t recall.

She’s three. She’s a beautiful, sweet little girl with captivating blue eyes, dark hair and dimples. She has a mischievous smile and laughs at all the right things—including her brothers getting in trouble, people falling, etc. She loves trucks and hates babies.

Medically, she’s been a mystery since birth. She hasn’t been diagnosed. She’s had a slew of surgeries—some planned, some emergent. She can’t eat by mouth and never has. She can’t gain enough weight even with a feeding tube pumping in calories. She just started saying “Mama,” but has no other functional expressive language despite being a social, attentive kid. She’s not meeting her motor milestones. She has bizarre endocrine problems—hypothyroidism, hypoglycemia. There’s way more. Mitochondrial Disease could explain a lot of this.

Three doctors and a nurse came in to talk to us today. The metabolic specialist talked in very general terms about the testing and its limitations. Then she talked about Laila’s testing, which came back abnormal. According to this test, there is a Complex IV abnormality. The doctor kept trying to reassure me that this could have been because of the way the testing was done, that perhaps the test should be repeated at a well-known Midwestern hospital, if we were willing to travel. She still thinks Laila has a yet-to-be diagnosed genetic disorder. She wanted to assure me that she did the right thing by not ordering this test two years ago.

I heard her. I paid attention. I nodded. I asked a few questions. I tried not to cry.

If this is what Laila has, it’s bad. There’s no cure. There’s hardly any treatment. None with proven results.

If this is what Laila has, her case is severe. Her symptoms were present at birth–intrauterine growth restriction, hypotonia, respiratory distress. Prognosis is based on presentation at birth, progress by one year, progress by three years. Once they told me that, there wasn’t much more to say.

I adopted Laila when she was eight months old, in January 2009. Eleven months prior, our oldest child, then 5 ½, died after a particularly aggressive pneumonia eviscerated his already compromised lungs and quickly caused multi-organ failure and DIC.

When they removed his ventilator, after it was over, he bled from his tracheotomy and everywhere else because his blood couldn’t clot. Even afterwards. I stood and cried and suctioned my dead son’s trach because it looked like he was choking. I held him and told him how sorry I was…over and over again. It wasn’t until recently that I even realized what I was sorry for, which was the inability to protect him from Death. A few weeks after he was buried, I would go and lay at the cemetery to feel close to him. Now, three years later, nothing I do makes me feel close to him anymore.

I shared the news about Laila with my partner, Laila’s other mom, after the appointment. I didn’t tell her what the diagnosis would really mean. I can’t tell anyone. We’re finally at a point, three years after our son’s death, where it doesn’t always hurt as much. It doesn’t hurt people to be around us. Although still missing him, our family feels more whole and more stable. But I sit here tonight with Laila beside me, knowing that my partner and I may bury her next to her oldest brother in the plot we chose for ourselves, the plot where we were going to be cremated together.

The weight of this information hasn’t fully pressed down, and it’s already beginning to crush me.

So I ask you, The Band, please help me carry this.

I am alone with the weight of the world.