At 10 o’clock in the morning on a Friday one year ago, our phone rings. It is our (then) pediatrician with Esmé’s brain MRI. She’d had the brain scan to look for damage after her cardiac and respiratory arrest several months before–when she was three months old.

“The good news,” he says “is that there is no damage from her event in April. The MRI has also given us some insight into why Esmé is the way she is. It looks as though she has some form of leukodystrophy.”

He explains that there are lots of different forms of leukodystrophy and that this does not constitute a diagnosis since we will need to figure out what type she has.

He spells the word “leukodystrophy” for me. Twice.

Ten minutes on the internet shows me that almost every form of the disease is fatal in two to ten years. The one I can find that is not fatal occurs only in boys. My husband leaves work immediately hearing my hysterical voice on the other end of the phone…I can hardly form words. We spend the weekend curled in our bed playing with Esmé and crying while we watch her sleep.

In the midst of this hell we somehow managed to bring ourselves to attend, of all possible tortures, a baby shower for friends. I don’t remember much about that trip, other than staring at my friend’s swollen belly with tremendous jealousy, not for her child, but for the naive and hopeful world that grows around such a belly–a world where children do not die, a world where children are “special” but not “special needs.” I also remember the hot stares we got as we fed and vented Esmé’s g-tube, and as it became clear to the strangers around us that at nine months she could not even hold up her own head. No one wants a sick baby at a baby shower. It shows the chinks their shared fantasy.

I barely made it through our goodbyes when the tears started. When the car door sealed us back into our own world, I broke into sobs.

It was two weeks before we saw the doctors at our new hospital–these doctors had the sense to recognize that the MRI report was wrong. Leukodystrophy is a de-myelinating disease. It causes the loss of the myelin sheath in the brain….and with it the slow deterioration of all abilities, the loss of the self. The pattern on Esmé’s MRI, on the other hand, was consistent with DELAYED myelination, meaning that the sheath had not yet fully developed. Delayed myelination is consistent with the types of delays we see in Esmé…and it was unsurprising to these new Super Doctors. Months later we had their suspicions confirmed with a follow up MRI showing “interim myelination”–meaning that her myelin proceeded to grow during this time, rather than deteriorate.

Thank the gods.

In a deranged way, this series of events was a surprising blessing. In the months that led up to hearing the sound of that foreign word–leukodystrophy–we had railed against the idea of Esmé being diagnosed with anything. We wanted to believe that our child would just “catch-up.” We just had to find the right food, medication, surgery, therapy, and everything would be fine. Our child wasn’t disabled…she was delicate, ethereal…but definitely not disabled.

Once the word leukodystrophy entered our lexicon, we have tried on every other possible diagnosis in stride…as long as it was not fatal. It seemed crazy to have mourned the possibility that Ez might not walk, or be a “great mind.” These, as someone once said to me, are the problems of the living. We had peered into that other world a world where Esmé would cease to be herself. Anything other than that place would be just fine, thank you very much.

For me it ended the period of denial…and helped us to accept our girl just as she is, not as we imagine her to be. I am not going to suggest that I do not occasionally slip into sorrow when I see what a child half her age can do. I have shed my fair share of tears over facebook baby brag posts. And I certainly fear what the future has in store for my child…especially since a diagnosis of The Cute Syndrome gives us zero leads on her future. Its just that we know that Ezzy is exactly who she is and that is perfect. No amount of worry will change that.

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