Our Heartbreak Began With A Strep Infection

One of my first memories of motherhood is a nurse helping to hold my daughter’s tiny mouth to my chest, while both of us encouraged her to latch on and feed. It didn’t feel natural, in fact it hurt; but for a girl I’d known just moments I was willing to move mountains. So, I kept at it. I kept at it until we figured it out. Not because it was easy, but because I believed it to be best. And in that moment, I knew the power of the love of a mama.

I returned to school when my girl was five days old and work just before she turned two weeks. Not because I wanted to, but because I needed to support us. Well meaning friends and family said, “I could never leave her,” but it didn’t feel like a choice.

It was best for her, so I did it.

I nursed her for two years. The first exclusively. I tried formula once, but she was allergic. Violently so. I could have trialed others, but to me it wasn’t worth the risk. Instead I’d woke up to feed her twice each night, and two more times to pump. Every two hours either she or a machine lay attached to my chest. I didn’t sleep more than two consecutive hours that whole first year. Because it’s what she needed of me. Again, from well-meaning friends and family I’d hear “I could never do that.” Maybe in their minds they were showing support or justifying the fact that they thought they’d choose not to, but I was starting to realize those words were isolating.

I wasn’t any different than them; I was a mama doing the best I could.

My daughter had a normal and healthy childhood. Until she didn’t. I guess that’s how it usually goes, though. Nobody expects a figurative Mack truck is coming to take them out.

But there it was.

For us the Mack truck was strep throat. And it pummeled us. First it made my girl physically ill, as strep does. Then it began attacking her brain. In the blink of an eye, my girl, as I knew her, was gone.

There were her holes in her memory. She was anxious. Her body tremored. She was uncharacteristically claustrophobic. She couldn’t stand being in cars and would try to throw herself out, even as they were moving. The little girl I knew, a child who had always insisted on matching “bow to toe” would suddenly only wear athletic dry fit clothes. My sweet, always-agreeable child had turned defiant, and school, which had always come easy to her was now impossible. Nothing made sense. And my heart broke for her.

Friends and family would look at us and shake their heads, saying “I couldn’t handle that.”

Again, they meant well. But I also think it was their polite way of saying “I am relieved it’s you and not me.”

Her symptoms aligned with something called PANDAS. A disease characterized by behavioral and personality changes, and strange movements after strep. It’s recognized in the medical community, but inexplicably controversial. Finding a doctor to treat was akin to finding a needle in a haystack. And as we sought treatment and help, she deteriorated.

Again, cue the chorus of phrases such as “You’re so brave” and “I could never.”

After several frantic phone calls and hours of internet searching, we found help about four hours from our home. A Cleveland physician who said he could help, “but it would be costly.” He explained that there was a code for insurance to bill if you were “sucked into the engine of a plane,” but “not for this condition.” He wasn’t a fraud, either. It was just the reality we’d come to know of the diagnosis.

In the end, the cost didn’t matter. Our girl deteriorated too much, and too fast, for him to help.

I was home watching Trolls with her one night when she began seizing. The seizures gave way to hallucinations and for the first time I hovered over her helplessly as an ambulance drove us away.

Friends and family surrounded us. They offered to help with my other children. They dropped off coffee for me and balloons for her and whispered, “You’re so strong.”

It wasn’t strength moving me forward though, it was love. And again their words, though loaded with good intentions, discounted my pain.

I wasn’t operating from a place of strength, I was operating as a mama. And no matter how much love my heart held, it was breaking.

It would take us nearly another year to get help.

A scary year.

A year marked by more needles and hospital stays than I could count, cross country treks to see specialists, and three times of watching my daughter be loaded into an ambulance, with only a prayer she’d be unloaded alive.

With each admission fewer people would come to the hospital. To me, that was only natural. The lives of our loved ones moved on, while ours stood still. Still, from those who meant the most I’d hear “I couldn’t live through what you have,” or “Thank goodness she has you.”

Throughout that year I’d learn to flush lines, give IV meds and feed my child through a tube. People would shudder and say, “I can’t believe you can do that,” unaware that if it were life or death they would, too.

I’d come to understand their words were self-preservation. Nobody wants to believe bad things can happen to them. Instead, their minds presented my family as “capable,” justifying our suffering. I wasn’t angry, but it hurt. I wasn’t made for this. I was made to be a mama, and this came with it.

Finally, a diagnosis for her current state came. Autoimmune Encephalitis. Because it took so long to find, she also now had an acquired brain injury. Her brain nor body would even be the same.

But there was hope. Hope because with treatment and care we’d still have our girl.

She began a regimen of IV and oral chemo and monthly antibody infusions.

We signed consent for blood products and meds so toxic that nurses wouldn’t touch them un-gloved, all the while believing it would make her better. What else was there to do?

I was on autopilot, not thinking of “how I’d do it.”

Some months it works, others not so much. That’s because donor antibodies vary.

It’s a roller coaster we can’t get off.

Day to day we’re at the mercy of the disease as to if she’ll walk, talk or even breathe.

Sometimes she can talk to us, other times her voice is lost for weeks at a time.

And often we hear “I could never live with the up and down,” but the truth is we couldn’t live with the alternative.

We hit the rehab process hard. She has ten therapy appointments per week. Not because we’re confident it’s making a difference but because we know the cost of doing nothing. And you’re probably thinking “I could never schedule that,” but if you’re a mama, you would.

You see, nobody handed my family capes the day the Mack truck came for us. We weren’t superheroes overnight. In fact, if anything our strength was threatened as the foundation of everything we knew crumbled. But the love for our sweet girl, no matter the state she was in, carried us.

12 years ago I knew for this child of mine I’d move mountains, but thankfully I didn’t know just how big those mountains would be.

One of the well-intentioned clichés I hear often is “You’re never given more than you can handle.” And it’s as frustrating as it is untrue. Because the world is an imperfect place, and sometimes we’re given burdens too great for any one person. And in those moments, we need to be able to reach out to loved ones, who don’t expect that we’re together, and ask for help.

But when we protect ourselves, by pretending “we could never,” we rob them of that opportunity.

Be real. Be vulnerable. Join in me in saying “This friggin’ sucks.”

Then pick me up off the road, where the Mack truck has left me, and say “I’m sorry your girl is hurting, I am here.”

Trust me, our luck isn’t contagious, and dancing around the elephant in the room doesn’t make it disappear. We were dealt a raw hand. Love has auto piloted us to safety. Now together, let’s move forward.