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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13 thoughts on “Writing the story that I cannot

  1. Rick Chumsae says:

    Michelle,
    This is a beautiful, beautiful beginning. Please be empowered and blessed as you write; it helps everyone who comes across it.

  2. beth says:

    Of course we do, how could it be otherwise- the sadness or the forgiveness. Congratulations on posting and getting this giant, heavy, painful cement ball rolling…..it’s all a breezy, exhilarating sled downhill now. Love you tons

      Fill your paper with the breathings of your heart.  -William Wordsworth

    ________________________________

  3. Stacy says:

    A beautiful start, Michelle. Thank you for so eloquently sharing. I learn so much from you.

  4. Margot says:

    Michelle, a beautiful ,emotional first post. You are an inspiration, and your story is an important one to be told. I appreciate your honesty and heartfelt writing and look forward to following your and Miles’ incredible story! What a beautiful boy.

  5. You don’t know how to tell the story? Um, I think you just did, and I’m bawling as a result. Brilliantly done, friend.

  6. Beautiful writing revealing a beautiful heart. I look forward to learning more from you.

  7. Nicole Mayo-Gowell says:

    Thank you gor sharing Michelle! We all become a little more human and compassionate when others share their journeys. Thank you.
    xo Nicole MG

  8. Jen says:

    Thank you for sharing your story. Your loving heart shines through, but so do your very honest and understandable feelings of grief and guilt. I hope sharing this, and seeing the love coming back at you, help comfort you. You sound like an angel ❤

  9. Terry Poppleton says:

    Fantastic first chapter, Michelle. Tears are running down my cheeks as I read what you have so eloquently stated. My heart still wants me to believe that Miles will someday walk unassisted and I will never give up that dream. He has begun to do so many amazing things in the recent months that my belief is now stronger than ever. Don’t ever stop telling the world about this amazing boy’s achievements.

  10. Camille Donato says:

    When you can transfer the “breathings of your heart” on paper and have it felt in our hearts, it is a blessed gift. Thank you for moving me to tears of amazment, especially after spending the weekend with your wonder child.

  11. Thanks for sharing that, Michelle! It’s wonderful really, and I am sure that Miles will be such on overwhelming blessing to your family!

  12. Kathleen Dickman Dunn says:

    This is a very special story about an amazing family. Thank you for sharing your heart and pain with us. Miles is so lucky to have you and Stephen as parents. You can see the love he has for you both when he looks at you. Love that little guy … he is the best.

  13. Bonnie Thomas says:

    Michelle, what a beautiful expression of a mother’s true love.
    Spoken from the heart for all the world to hear.
    Thank you so much…an inspiration to all.

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