It's not gas. It's not the stomach flu. It's not reflux. What Baby M has been experiencing is likely called
infantile spasm. And if you google it, which I don't recommend, you will most likely find these words:
cataclysmic seizure disorder.
I know because it's what I read after googling the term a neurologist used to describe the worst case scenario (and very unlikely, so meant to ease my fears). It came after a long two weeks of trying to get answers and reassure myself that it was, as I was told,
just gas or reflux, and facing that gnawing sensation that it was something else. I made that now predictable error of using google and youtube for research. Will I ever learn?!
So there I sat, desperate and terrified, staring at a screen, hardly able to breathe. I tried to fight back tears, to quiet the voice that wanted to scream, "It's just not fair!!!" and managed a prayer-demand:
please, God, just one good thing. Can't you give me just one good thing?!?
And then there was a knock at the door. Literally. At that exact moment, somebody knocked on my door and tore me from my selfishness and blindness. I stumbled downstairs, scrambling to assemble myself and push the dog back and listen to the boys at the front window describe a woman who'd gotten out of a minivan. The door opened to my friend, whose name means the same as my daughter -
bitterly wanted - standing on the porch with a giant vase of hydrangea blooms. I stammered, and choked, and could feel a rush of heat to my tear ducts, which could no longer hold back the pain, frustration, and exhaustion.
"I am so sorry," she mumbled. There were other words, but I could only shake my head.
One Good Thing. When she asked, I stammered out something about the new possibility of a terrifying disorder. My fear. My dread. My anger. My prayer moments earlier. I clumsily fumbled when she said she just didn't know what to say: "just be thankful it's not your child." My internal tantrum against the unfairness and injustice of life raged behind my tears, but I bowed my head when she asked to pray for me. When she was done, I felt a glimmer of calm. Perhaps I'd be able to cope. It would be only the first of several times a friend would stop that day and pray for me, giving my thirsty soul and heart relief - if only for a bit longer - and helping me face forward.
I put the flowers on the table, and thought to myself how they reminded me of myself. Blooming, in spite of the winter months. It's possible, even if they are more naturally suited to a sunnier climate. They were beautiful, and they reminded me of the many gifts -
the many good things - in my life. This diagnosis would be scary, but not insurmountable. I pointed out the flowers to the boys; we admired them as we ate cold cereal for dinner and waited for Daddy to get home. Exhausted, I let them watch a movie while another friend came over and processed with me, letting me cry. When Mr. Kenobi came home, things settled for a bit, but when our baby had another "spasm," it did me in. I burst into uncontrollable sobs, wailing to a God I wasn't sure was listening, "Please! Please make it stop! Please fix this! Please!
IT'S JUST NOT FAIR!"
Mr. Kenobi took the baby from my grasp. I hadn't been this way since we heard the words, "chromosomal abnormalities." It's finally happening. It's finally too much. Everyone has her limits, and I've just crossed mine.
The night was long. Every sound she made, sleeping within an arm's reach of me, made me jump to check on her. I slept in scattered 15-minute naps, mostly laying awake in worry. When I woke in the morning, it was more like conceding a battle lost. I would not have rest, nor perspective, to start this day. So I went downstairs.
Soon joined by the little feet of Obi-1, I sat quietly in the living room, snuggling him and trying to reassure him that Mama wouldn't cry all day. I willed myself to hold back tears, and then he noticed something.
"Oh, no, Mama! The flowers - they're
dead!"
Sure enough, my beautiful blue blooms had wilted. I nearly laughed out loud at the absurdity. There they sat, poised on a dining room table, and wilted within a day. The heat from our fireplace, which I'd worked so hard to keep going the day before, had likely proven too much for them
Yup. Just like me. Couldn't stand the heat. Nice message from God.
Obi-2 came down soon after and noticed the arrangement with grief. "Mama! Your flowers died!"
Sarcastic prayers filled my mind, but somewhere - somewhere much deeper in me - words came from my mouth. The teacher spoke. "Actually, they died when they were cut from the plant, sweetie. They just wilted because the air got too dry around them."
Died when they were separated from the roots. Oh. My ears didn't listen to my own words until later.
Obi-1 stirred oatmeal, I zombied my way through morning routine. The phone rang - an EEG appointment was available today. I began calling friends, trying to find help for the boys so they wouldn't have to come with us. Cripled, wilting, I called a friend. The friend who lovingly burped my gassy baby last week. The friend who hosted my soul and my son in her home.
She's a little like my mother, this friend. No pitty-parties. Sympathy, but no wallowing allowed. She began to point out the good things. The reasons for gratitude. She quoted
this book - ironically one I gave her when I left her home - reminding me that miracles follow thanksgiving. With grace and compassion and steely resolve, she turned the lenses on my heart's kaleidoscopic and pointed to the colors. And when she had heard enough of my, "yes, but..." whining, she asked if she could pray for me, and thanked our common Father for the long lists of blessings in my life.
Because sometimes, that's what friends do. They write the thank you note while you're still staring at the ripped wrapping paper. Or, as I realized after the call, she watered my roots.
From that moment on, I could see things - the very same things - in my day with a different perspective. We didn't have to get an EEG. We had to gift of the premier facility in the area putting us on the schedule
today. We had a neurologist calling into the head of pediatric epilepsy, urging a quick review of our case. Friends' messages streamed in, gifts of hope and kindness in thought and prayer. Dear friend "Auntie V" rescheduled a client so she could stay with the boys, and arrived declaring how wonderful it was that she got to spend part of her day with them (with no indication that it was an immense favor for me). Another friend penned me sweet words of encouragement, birthed from a heart that walks a similar path to mine.
Searching to satisfy my hunger for tangible reasons to be grateful, I remembered a friend who'd walked through an EEG with her son, and called for insight on our appointment. No sooner did she hear what we faced than she said, "that's what my son had." Reassurance. Her bright, capable, beautiful (non-DS) son had come through this. So had she. So could we.
And so, perhaps it shouldn't shock anyone when I nearly burst into a dance of joy as the doctor - the same pediatric neurologist who had emailed back-and-forth with me and first mentioned the words that sparked my panic - called. Dance with joy? I was hearing the words that had only been a worst case scenario the night before. He had patiently consulted me with emails throughout the past few days, and paved the way for our daughter to be reviewed by the best of the hospital's experts. It was eight at night. He was likely home, but reviewing her brain waves via remote system. He had already left a message on my home number, but then called my personal cell phone to try to talk to me in person.
It is likely infantile spasms. Without missing a beat, he assured me that this will likely be okay. Children with Down syndrome are a bit more likely to have this, even as rare as it is. They also tend to do better - responding to more treatment options, responding well, recovering more quickly, with fewer or no long-term affect - than typical children. If your baby is going to have these, it is to her benefit to have been born with Down Syndrome. He spent about 15 minutes explaining, educating, encouraging. We've caught it early, and she's going to recover.
What once felt like
one more unfair thing was, divinely, a gift. Her underlying genetic differences made her stronger. More able to fight and win, not less. More able to shine on the other side of this. Less likely to wilt in the heat.
I'm so grateful. I'm a little nervous, too, of course. Treatments and epilepsy are a big deal, even if we're under the care of the best. This Mama carefully researches everything that goes into her babies' bodies, so the thought of what we're about to do to my youngest makes my stomach tense, but a grateful heart is a good antacid for that. Armed with more information, but more importantly, new perspective, I'm back. A living plant loses some of its prized blooms when pruned, but leaves room and nutrients for new growth.
Love,
MamaToo
p.s. for those wondering the health background...
She started doing little hiccup-like crunches a couple weeks ago, when the rest of the family was falling to a brief-but-vicious stomach bug, but she never got sick. When we realized it was happening at least once a day, for several days, we called the pediatrician. I remember using the words, "
I'm afraid it could be seizures." The nurse asked many questions, and concluded that it likely wasn't seizures. More likely was that dratted stomach bug. We had an appointment already scheduled for a week out, and could check it then. Unsatisfied, I asked her to review that thought with the doctor and call me back if he'd like to see the video I took. She called the next morning; they had discussed it more and while she asked a few more questions, it just didn't strike them as something urgent. It was likely gas or upset tummy.
So I went to visit a dear friend, and when she saw it, she said, "Oh, that baby has gas! Don't worry!" I got back to town and took our baby into the pediatrician for her visit. She happened to have an episode when we walked in, and a nurse observed it, seeming to think it was odd, but not alarming. Another nurse came in, discussed with me, and watched the video from my phone. Everyone seemed to conclude it was classic signs of reflux. Except our baby doesn't spit up (that was Obi-3 - ufdah!) and it doesn't always happen around eating. It's more likely to happen upon waking up, or shortly after falling asleep, or when she's quite tired. The pediatrician (not our usual one, but a partner in the practice) came in, asked more questions, and viewed the video. "Hmmm... yeah, it's probably reflux. We can get an EEG if it would make you feel better, just to be on the safe side."
Feeling like
that mom who was insisting on extra testing for her perfectly well child, I emailed the neurologist we'd seen when we enrolled in a children's hospital program for Down Syndrome. He mentioned infantile spasms (the first I heard the term) were a very rare thing that would be ruled out by an EEG, and said it wouldn't be an unreasonable precaution or defensive medicine to go ahead with that. He also offered to take a look at the video I'd shot. Within hours, we were on the schedule at two hospitals (I cancelled the later appointment as soon as I got into children's hospital). The EEG went well, and the test results are still in process but the neurologist feels the data supports infantile spasms, which is what he saw in my video. He does think her spasms are quite mild, which is probably the reason (along with the rarity of these seizures) our pediatrician didn't spot it initially. He also says we've figured it out early enough to diagnose and treat quickly, hopefully averting any long-term issues with her. For those of you in my close circle, I'll keep you updated with other information as I know it.