A birthday ambush

Today I am breaking my silence, finally able to breathe and talk again after a whopping gut punch that took me down.

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At Miles’ eighth birthday party several weeks ago, I saw what I knew in my heart was a seizure. Quick and small, imperceptible to almost everyone, it was unthinkably cruel to witness amidst the balloons and the laughter.

For three years and eight months, nearly half his young life, we have had a seizure-free boy. Yes, I was still counting the days of freedom and wonderment.

After what I saw, I felt that same old fight-or-flight daze return amidst the party guests. I took a few minutes alone for my silent primal scream, but then gathered up my smiles. We went on with the sledding, the potluck dinner, the piñata-smashing in the barn, the birthday cake, the gathering of so many people from near and far who come to honor our son at this time every year.

The next day, Sunday, my mother (who had seen the first event) told me she had seen another one just like it later at the party. She had refused to tell me as we celebrated.

As we approached Miles’ actual birthday that week, I was seeing more spasm-like events and now-implicated cycles of blinking, and scheduling a rush EEG.

It took three antiepileptic drugs plus the Ketogenic Diet to finally get Miles’ intractible seizures gone in 2009. There aren’t words for the burden that had been lifted as the seizures floated away and the daily hauntings finally stopped. We held steady on that perfect, freedom-giving treatment cocktail and enjoyed every second of our newly present child. He could do little, but he could be with us, and that was our priceless reward.

Two summers ago, Miles was then checked by EEG. His brain wave pattern had actually normalized. No words, just overwhelming joy and amazement at the power of what we had been able to do, supported by the best sub-specialist, for his severely compromised brain. No words.

Then we started ever-so-slowly peeling away the treatments, to see if Miles could fly seizure-free on his own without them. First the AED that quelled the infantile spasms, the devastating seizures that almost all patients outgrow by age five. Then the Topamax, which when combined with the Ketogenic Diet had caused him osteopenia and three long-bone breaks in two years. We then started slowly weaning the Keto Diet, keeping him on the last AED, Keppra, to be safe.

For the last eighteen months we have methodically dialed down the fat ratio of Miles’ diet. It was a long way to go from 4:1. With all faith and patience we made the slow changes that finally, this Thanksgiving, took him out of ketosis. It was nerve-wracking as hell; Miles had been on the Keto Diet since he was 11 months old. But he did beautifully, and suddenly he could have carbs and sugars and frog-leap normalcy around his tube feeds and oral-motor tastings.

Yes, Miles did beautifully coming off all his seizure treaments, until his birthday party. It was a very hard way to find out that our son could not fly solo.

Four days after he turned eight, Miles had the ordered sleep-deprived EEG. On the table, while the tech applied leads all over his head, my baby had a handful of spasm-type seizures deliberately provoked by the lack of sleep. It took all my strength to watch and be present as I held him down and he cried. I had kept him awake per the hospital’s orders, so ultimately I was making my boy seize, and we hadn’t even captured it because the machines weren’t turned on yet. Never had I thought we would be back in this ugly, complicated world ruled by misfirings of my son’s brain.

Nonetheless, we try to find our gratitude with our footing. We are thankful that the seizures are not frequent, at least for now. We are thankful that at this age they should no longer be devastating to Miles’ continued slow development. So we push the Keppra dose and keep the blessed Keto Diet treatment option in our back pocket. I alert my son’s extended team about his change in status, and accept their stream of condolences. I hold off on ordering a new Medic Alert bracelet for Miles that has “seizures” removed from it. I recalibrate and mourn.

Such is the nature of catastrophic epilepsies of childhood. The battle is apparently never, ever over. When you let yourself completely forget you were ever in it, and kick back because of the elapsed time and the proof and the trust you’ve built, you can get ambushed. But God knows you remember how to fight, and why.

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The first diagnosis

Miles as a baby

I’ll never forget that phone call as long as I live.

The phone rang as I read a line from my water-warped pale yellow copy of “Desiderata*,” which I had uncharacteristically posted on my refrigerator months earlier. It had been included in my childbirth education packet, and I instantly fell in love with its poetical advice:

“Go placidly amidst the noise and haste, and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexatious to the spirit.
If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.
Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul. With all its shams, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.”

Frequently I would meander over to the piece and reread a line or two. The Desiderata had became a beautiful comfort to me during those months of transition to becoming a first-time mother, when I wasn’t sure who I was and who I was becoming.

It was 1 p.m. on Friday afternoon as the phone rang. Baby Miles, now five weeks old, was sleeping soundly after nursing. It was his pediatrician calling, which was odd. I cannot even recount now what he said, except that he was really calling to say that Miles had Down syndrome.

The kitchen surrounding me turned to slow motion. What the doctor said meant nothing, and everything. It was gobbledygook, and yet it was my whole life spread out in front of me for thieves. I stammered that it was impossible. Our baby was over a month old. He was healthy. This kind of oversight doesn’t happen. The misalignment of facts as they should be would give me immunity from any dark truths.

“Nurture strength of spirit to shield you in sudden misfortune,” was the line I had randomly picked to read right as the phone had rung.

I argued with the doctor a bit more as I felt myself melting to the floor, and lost the handset.

There was nobody with me to help me process, to share my pain and disbelief, to scream at, to cry on. I was alone in my house with a baby whose brain was, shockingly, suddenly not right. And I was reeling from both the information and the unethical method of delivery.

The movies in my mind then started up at high speed, and I immediately became the attorney hellbent on collecting any historical scrap of evidence that might prove or disprove the news. There wasn’t a lot to go on, but enough. My off-the-chart excessive amniotic fluid. My mom’s mention of the shape of the bridge of Miles’ nose after birth. The damning jinx I surely put on myself with every “What if?” conversation I’d had with my husband and my mother while pregnant. The oh-so-subtle characteristics of Miles’ beautiful, tiny face.

But there were other pieces of evidence that contradicted the diagnosis. Miles was a very big baby at 22 inches long and over nine pounds at birth. The high-risk specialist had ruled out chromosomal issues during weekly third-trimester ultrasounds for the polyhydramnios because of his size. His breastfeeding latch was strong. And Miles even had my curls.

We hadn’t had an amniocentesis because I had already lost two babies in the first trimesters. Miles was our salvation, our postponed joy. He would help Mommy plant two rosebushes as an adorable toddler someday.

I went into my angel’s bedroom to look at him in his crib. I scrutinized his proportions, his body, his face. It was a sickening exercise that made me feel ashamed. Mostly, I needed to cuddle my sweet infant and know that predictable warm feeling of alrightness. And I needed to start my lifelong mourning, because the assurance of my son’s boundless future was as quickly over as it was beginning.

Nurture strength of spirit to shield you in sudden misfortune.

Still dazed, I wandered through various rooms. I had another crisis, smaller but still real, on my hands: to make the terrible decision of how soon, and how, to tell the family, but most importantly, my husband. Either I had to call him at work and deliver the devastating news in that same maximally devastating manner, or wait six more hours until he got home to be able to tell him in person. I only knew that I could not call my parents in Buffalo before I told my husband.

Deliberating the lesser of two profound evils, and soaked in tears, I knew that I could not wait alone for hours to unload my despair. I called Stephen at work, long-distance in Boston. He answered. I did one of the hardest things I have ever done in my life, and I did a bad job. Eloquence does not co-exist with downright despair. I could hardly speak.

I had my husband crying on the phone, and through our shared wailing, I finally understood that he had missed the message. He was crying because he had heard me say that our baby had died.

Nurture strength of spirit to shield you in sudden misfortune.

“No, sweetheart, he did not die!” I choked, trying uselessly to stop the flood of his pain.

No conventional death. Just the first of multiple diagnoses, an unbeknownst unraveling.

(*Thank you to author Max Ehrmann for his gift of prose, which I still cherish to this day.)

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.

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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.