Writing the story that I cannot

I don’t know how to crack this nut, how to tell you about my beautiful and joyful–but profoundly disabled and medically fragile–son Miles. So I haven’t. And as I have wax paralyzed, this professional wordsmith has found her ultimate writer’s block in her own complicated child.

I don’t know how to properly tell you about Miles, because the story is too big and messy. But I need to, and it is time. So today, even though I don’t know how, I am going to tell you anyway.

The chronology of events which began nearly eight years ago is an ugly, protracted blur. We had a healthy firstborn son, and life was beautiful (if a little exhausting). But somehow, in his second month, we were told by his pediatrician that our infant has Down syndrome. It must be the wrong number the doctor has dialed, I said when I got that call one Friday at 1 p.m., home alone.

But no.

Our precious baby boy was indeed “mentally retarded” (a now-controversial term), and my life’s resplendent and carefully crafted glass tower was shattering. In slow motion it sends down a shower of lethal shards. I brace myself, shudder, receive them without consent into my flesh, my brain, my eyes, my mother heart. The adrenaline rush of the fight-or-flight response courses through me daily, and I am physically ill for months trying to deny the life-changing news. My mother’s instinct trumps exhaustion or reason. There is no rest when your baby suddenly isn’t normal.

As is human nature, you then bank on the miracle. You’ll do everything in your power and more to give your special child every compensation and extra opportunity. This hope grows inside of you and provides a thick, padded wall of solace. You dare to dream a bit again about parts of your child’s ransacked future. You let your guard down; you get excited again. Then, when two months later seizures are drowning his tiny body and mind and pulling you and your husband down with him, you know the punchline. Every morning you wake up and hope that the worst nightmare you ever had is over, but it can never be now. You’re trapped, doomed, treading water–and for what? You don’t even know.

I think about telling you of the random moments as Miles’ mom, the pitiful and the shining moments.

The wide-eyed incredulous look of our six-year-old boy taking his first tiny tastes by mouth after five years without.

The morning five years ago when we had to abandon a brave vacation on our beloved Martha’s Vineyard, riding the ambulance on the sunrise ferry with an unstable Miles as the loud pink sky shouted for us to stay.

Our shock at the first time we ever saw our boy sit up on the floor without any support, at age seven, the still-magnificent accomplishment of his school team.

The way that seeing the face and accompanying printed names of handsome male celebrities named “Miles” (spelled specifically with an “i”) sets me off immediately into tears, and always will.

Often I ponder the relativity of “normal,” and how much pain is to be expected in life. You hear updates from your high school graduating class and realize that many old friends have experienced profound loss of their own since those carefree days. I hug my sweet angel, who finally can hug me back now, and I feel some of my old hope back in my bones.

Other days, I look into my son’s sky-like eyes and see the emptiness that my aberrant egg very likely created. And my pain cannot be described. It flows silently and endlessly. I forget about it for chunks of my day; yet when I remember, there it is, steady and unchanged.

One of my big comforts is knowing that Miles is not in pain, and that he is a fundamentally happy child, although he understands almost nothing of what happens around him.

For almost eight years, we’ve been in that teary brine, resuscitating our forlorn baby and pulling him back into the boat over and over again. The waves are no longer sickening. We get to live at home instead of splitting our time at the hospital. We now also have a beautiful second son, Zane, who is healthy and typically developing and normalizing for our family. Miles’ smiles have returned (more on that later), and we killed his seizure monsters almost four years ago now in the ultimate miracle.

We feel exceptionally grateful at how much easier things are, and unspeakably proud of Miles’ accomplishments, which already far exceed our expectations.

But still, I hope you’ll forgive this mother her daily sadness.


The Birth of Miles’ Blog

Seven-and-a-half years ago, a spirit entered our world and forever changed those who love him, but especially his father and me. His name was Miles Julian, which happens to mean “beautiful soldier.”

My story of Miles begins with the bliss of first-time motherhood, but it quickly careens like a fatal car crash. The son we had lovingly brought to Earth was the opposite of healthy. In the unfolding nightmare, he had a chromosomal abnormality. He also had a rare and catastrophic seizure disorder that soon escalated to over 100 seizures a day, and completely stole him from us as we tore our eyes out trying to save him. Ultimately, he was profoundly disabled and medically fragile.

My marriage was ransacked fighting for Miles’ cognitive life. My will to live disappeared for a time. Hope left our family and despair and pain became our daily food. We wanted our mostly perfect life back, but most of all we wanted our healthy, smart little prince–the one we’d been promised in our hearts and our imaginations–to finally materialize. That Miles was a figment, it turned out. We wanted to wake up from the nightmare. With seven years of hard work, devotion, and healing love for and from this innocent cherub, it is now only some days that I still do.

This is Miles’ story.