One thing that I have not shared much about is a very good and important thing that happened over the summer. Last summer had some real downers but those don’t subtract from our joy, and rejoicing, over a new victory.
Our second born had a rough time for a few years. A major accident at our church, febrile seizures, and getting very sick in Guatemala. When we returned home and began fostering, he embraced her fully as a toddler would, and his febrile seizures continued but thankfully he was not often running a fever. 9 months after her arrival, in the aftershocks of her sudden removal, some of his first sentences were heart wrenching. While we were fighting that battle, Asher began having many more seizures. Maybe stress and the emotional trauma of losing a baby like that did something, maybe it’s just coincidence. It was a very hard period. These were not just febrile seizures like they had thought and the medical bills started piling up.
There are many things we don’t know about epilepsy, and that doctors and scientists don’t know. It is a scary diagnosis. Asher began treatment, and despite changing jobs and insurance twice, and becoming part of medical, was able to see the same pediatric neurologist his whole life. Because of the Affordable Care Act, we were able to have continuation of care and not be penalized for his epilepsy. I tried going to the first neurologist we were referred to on one of our new plans at the time. It was a truly terrible experience and I could not imagine working with them to sort out appointments, let alone solutions, as we found ourselves on this path.
The first medication didn’t slow down the seizures. We gave it a good run but we saw the negative side effects and didn’t notice much relief. It was hard because he couldn’t tell us how it made him feel, and if he sensed anything different before or after his episodes. We slowly began a different medication–one which introducing too quickly to patients could end in fatality. Doctors said after more testing and overnights that they didn’t think he would outgrow epilepsy. I briefed babysitters and teachers and sunday school. I tried not to think about IEPs one day, or driving, or camp, or anything restricted on this bright eyed wonder.
He did well on the new medication and we could breathe once we reached a therapeutic dose with no rash outbreak. We were still dealing with collections, payments, and billing reductions but we were not documenting seizures. Eventually the grip on the phone when separated loosened. The spans of playing out of eyesight lengthened. The months between UCLA neurology visits and that $14 parking garage grew. He was pro at taking his pills. We were pro at fighting, I mean working, with the local pharmacy to help them keep their inventory up and refills regular.
As Asher’s Kindergarten graduation plans were taking shape, and no ambulance was ever called, we had another checkup. It was a slow breakthrough. With epilepsy they call seizures emerging under medication “breakthrough,” which is the opposite of any headway a parent wants to make. I was shocked to hear of a real breakthrough: the dr thought we could try titrating down, off the medication, to test the epilepsy. Maybe he was outgrowing it. Maybe it was different than they had thought. It had been over a year. No delays. No jumps in dosage. Maybe the prayers, the hopes, barely spoken aloud for fear it would ruin our ability to walk the prescribed, long road ahead, were coming true.
On my birthday, Asher took his last, now tiny dose of epilepsy medication. And there have been no breakthrough seizures during the months of transitioning off. His moods and energy seem to have panned out, from however the drugs affected his system, combined with the excited exhaustion of starting 1st grade. We don’t wonder if something is seizure, drug, or age/misbehavior/mood related now. It’s just C, a 5-year-old boy, learning. We are thrilled at his progress and health, for him, for us, and for the pharmacy on the corner. I don’t know when we can say he does not have epilepsy, when it will be far enough away that a glazed look doesn’t cause my 2nd take, but each day is closer to then.
To be sure, it has been a rough year on almost all accounts. Homes, literal and figurative, are burning down all around us. But this is quite the foil. We are so proud of this boy and his love and tenacity and incredibly excited that this is yet another new normal. This victory, this praise, deserves our tears, applause, and thanksgiving and I’m so glad to be able to share this today, in the midst of all the todayness that weighs heavy. We’ve learned so many lessons by his side. From the waiting, to the hurting, to the forgiving and the grieving, to the advocacy, to the pain of children’s hospitals, in which so many have stayed for far more time. We’ve learned to take things by the day, that anesthesiologists have their own groups, and nothing is for granted. We’ve seen how limited we are as parents, and how scary pre-existing conditions and medical bills can really, really be. And we’ve been encouraged to keep places of hope in our lives that defy reason, that may be hibernating, for an unexpected spring. Who knows, maybe your birthday is coming. Maybe the breakthrough is slow. Maybe because this maybe came true.