Wednesday, December 10, 2014

The boy of my dreams


I can't remember the dreams I had for him while I was pregnant, only that I wanted a roly-poly baby who was full of smiles. Dave and I were both leaning toward having a boy, but we'd decided not to find out the sex because we wanted that delivery room surprise.

I bought a rocking chair with a vintage toile pattern of children playing, and a crib, chest of drawers and bureau. Max's room was all set up before he was born. I pictured cuddling with a baby in the chair in maternal bliss. I pictured gently washing a baby in the tub we got. We got a stroller, too, and I couldn't wait to be one of those moms walking briskly through the park, a little bundle tucked inside the stroller.

Mostly, I dreamed of having a baby. I had no worries that anything would go wrong. Nobody thinks that their baby will have a stroke. 


After the world-renowned pediatric neurologist told us all the things that Max was at risk for—not walking or talking, cognitive impairment—I cried for days on end. My dreams did not go "pop!" like a balloon. I was too numb to deal with anything but function: talk with doctors, gaze at Max in the incubator, hold him when I could, pump milk, catch some sleep, talk with more doctors. I couldn't bear to speak with friends on the phone, except the one whose husband was a doctor. By the second week of Max's NICU stay, I was researching pediatric stroke and therapies on our computer.

What I most vividly remember about the NICU is the nursing room, where I would pump milk in the tan pleather chair and place it in the fridge, alongside bags of other mothers' milk. I was so determined to provide whatever nourishment I could to Max, because I was otherwise helpless to do anything.

My friend Wendy found an expert doing research on stem cell infusions, said to spark brain cell regeneration. But the doctor said we'd need to get a "compassionate use" exception from the FDA to infuse Max with the cord blood we'd only just banked. That was reserved for people with a serious or life-threatening disease. Max had brain damage, but he had stabilized since day four of his life, when the doctor had said we could sign a Do Not Resuscitate if we chose to.


The first few months at home with Max were mostly spent taking him to therapists and doctors and nursing him. Eventually, I'd realize that he was having trouble breastfeeding because his sucking had been affected by the stroke, which was why a feeding session could take an hour and a half, but I didn't care. 

Max slept next to me in bed. He'd had seizures the day after he was born, how doctors realized something had happened to him, and I was terrified they'd return. During the day, I'd walk around the house with him in a Baby Bjorn. I was no longer numb, just grim and anxious about what the future held for my sweet boy. What disabilities would he have? What kind of life would he have? What could he overcome? What could I do?

My dreams were only pragmatic. I dreamed of finding the best therapists for Max. I dreamed of breakthrough therapies. I dreamed of a doctor who would give good news. One gave me hope. One told me that Max's future looked "ominous" and it crushed my spirit all over again.

Max smiled at three months old. He was deliciously plump. I got the smiley, yummy baby, even if at times I was too anxious to fully savor him.

Meanwhile, I'd enrolled Max in Early Intervention. The coordinator, Sue, was smart, kind and understanding. I told her Max needed the most experienced therapists possible because he was at risk for so much, and she found them: Mindy the physical therapist, Nafeesa the occupational therapist. And later, speech therapists. Dave and I decided to supplement Early Intervention with private therapy sessions. Then we did alternative treatments like hyperbaric oxygen treatment and craniosacral therapy. At one point in his first year of life, Max had 12 therapy sessions a week.

The neurologist was kind and readily available to answer questions. Our pediatrician gave me his private office number and put me in touch with two other mothers he knew whose babies had strokes. The developmental pediatrician called Max "darling" and said he had brightness in his eyes. Team Max gave me comfort. But I didn't dare dream that he would walk or talk; I was too afraid to hope for fear of being devastated.

The commando crawling started at 18 months old, Max dragging his body along the floor with his arms. At two years old, he gained the strength to pick himself up on all fours and crawl. At three, on his birthday, he toddled from Dave's arms to mine in his bedroom and Dave and I both cried. It was so hard to believe it had happened.

Max never babbled. He eventually learned to communicate by shaking his head "yes" and "no" and pointing at photos we collected in a binder, a primitive form of the speech app he'd eventually use on an iPad. His first word was "no" (of course). "Ohmmy" and "ahh-eee" followed; consonants have always been the hardest for him.

The dreams that you never expect to come true are that much more euphoric if they do.

And because you didn't have the dreams, those accomplishments become the dreams.


I got Max's school pictures the other day. I opened the envelope, then stared and stared at his photo. He looked so grown up, handsome and happy.

Before Max came, I couldn't have dreamed I'd have a boy this cute. That hair!

I couldn't have dreamed I'd have a boy this good-natured and cheerful. That giggle. That laugh. That smile.

I couldn't have dreamed I'd have a boy so determined to do his best, no matter what challenges his muscles threw his way.

I couldn't have dreamed how much I'd end up talking about purple, spaghetti, car washes, Lightning McQueen, firefighters, Chicago or any of his other fascinations, because I couldn't have dreamed up this mind of his that works in wonderful and mysterious ways. 

I couldn't have dreamed how excited the sound of a new word could make me, or even just the sound of a letter. The other night, Max was talking once again about his upcoming March weekend trip to Chicago with Dave. "OK! You're going to Chicago!" I said, then I tucked him in and shut the lights. "OK! OK! OK! OK!" Max kept saying as he lay in bed. I guess he just liked the sound of it. I loved hearing him pronounce the "k."

I couldn't have dreamed how proud I'd be of every single big and little-yet-not-little accomplishment: using his pointer finger, eating independently, reading words, doing math, potty training, saying "please" and "thank you," riding a bike, giving hugs, making jokes, sitting through an IEP meeting, climbing stairs, descending stairs, winking. Yes, winking.

I couldn't have dreamed how much I would love him and Sabrina, so much so that my heart literally hurts at times, especially when I watch them sleep.

Max is 12 years old today.

And he is the boy of my dreams.


  1. Happy Birthday Max! He is so have such a wonderful gift of beautiful writing..

  2. Happy 12th, Fireman Max! I hope it's not too cold in Chicago. I hear the temperatures dip to below zero--and stay there. I want lolita (Japanese fashion) dresses for my birthday, but they are expensive.

  3. Happy big 12, Fireman Max! You're growing into a fine young man, but keep on being a kid as long as you can, it's worth it! ;) For you, I wish that all your dreams come true, and that you never lose your rockstar smile. I know you can do anything you put your heart to, so keep on kicking butt, to the MAX.

  4. Happy Birthday to Fireman Max!!! What an amazing journey for all of you...thank you for sharing!

  5. Oops, I hope I just didn't comment as anonymous. I hate that......Here it is as me.

    Happy birthday to Fireman Max from Tucson! Wow what a great picture! Thank you for sharing this today. So much of your journey struck a chord with me as your feelings are so similar to mine over the years.

  6. Beautiful! Sitting here crying...... Happy Birthday to Fireman Max from Scottsdale, Arizona!

  7. Happy Birthday, Max, and Bravo, Mom! He couldn't have done it without YOU!

  8. Happy birthday, Max!!! From Montreal, Canada :o)

  9. Happiest of birthdays, Fireman Max. And also to you, Ellen, Dave and Sabrina. Happy birthday to all of you.

  10. Aww... how sweet sometimes reality can be better than dreams.

  11. Birthday wishes Max 🎂 from Ireland x

  12. Happy birthday max!!
    You don't know how many people are glad to hear how well you're doing.

  13. Happy 12th Birthday Fireman Max! Only 1 more year until you are a teenager!

  14. Wonderful. These posts remind me what is important in life. Sending you and Max hugs!

  15. Happy birthday Fireman Max! What a gorgeous young man :-)

  16. Happy birthday to the amazing Fireman Max! Beautiful post -- one for the ages.

  17. A little poem, written by me for a special dude on his birthday:

    Today is Fireman Max's 12th birthday
    Which makes me shout real loud: "HOORAY!"
    Sending wishes of happiness and joy
    To an incredibly wonderful boy!

  18. A very happy birthday to dear Max.

  19. Ellen: I look forward to reading every single one of your posts. But this one is my all-time favorites. Thanks for making yourself this vulnerable. And your positivity continues to inspire me. Max is so lucky that you are his Mama! Kim

  20. I have got to stop reading these posts at work - I get a little teary eyed - thanks for sharing. You are so inspiring.

  21. I have fallen in love with your beautiful boy through reading your blog. Thank you for sharing him with all of us…he's pretty amazing! And you're right - he's wicked handsome!

  22. Oh. You got me. The tears! Thank you for sharing and happy birthday to Fireman Max!


Thanks for sharing!

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