I Didn’t Know This About My Son When I First Met Him

child-1051288_960_720I didn’t know it when I first met him.

They took him over to the corner. I tried to see, but they were blocking my view. I opened my mouth, nothing came out. A hand on my shoulder gently guided my head back onto the damp pillow. “You’re not finished yet, one more push, good girl,” someone reminded me. “Is he okay?” I panted. “Ten fingers, ten little toes, he’s perfect,” someone answered from the crowded corner.

“Hey, Mommy, there’s someone here to meet you.” I opened my heavy eyes, trying to focus on the blanket in her arms. “You passed out, sweetheart, you lost a little bit of blood, darling, so we had to give you a transfusion. You’ll feel better once you eat.” She bent down to reveal his button nose and pink skin.”Oh, okay.” I tried to sit up. “I’m going to pop baby in here and get you some tea and toast,” she gently placed him into the plastic cot beside my bed.

I watched him. I tried to pull the cot closer; I couldn’t. I leaned over trying to get a proper view of him. She came back. “Darling, we will be moving you to the ward later. Here eat some of this. He’s beautiful.” She smiled as she poured my tea. “I haven’t met him yet,” I blurted out. “What weight is he?” “9 pounds even, big boy,”she winked. Smiling, I began to eat.

Visitors came, and visitors went. He slept the whole day, sucking on his thumb. I tried to sleep, to no avail. His first night on this earth, he whimpered. I gently shimmed myself over to the edge of my bed, letting my legs fall off the side. Finally, he was ready to meet me. I nervously picked him up. “Hi.” I felt my eyes sting. He blinked. “Hi, I’m your Mammy.” I smiled, kissing his soft forehead. “Are you hungry?” I grabbed a bottle. He guzzled it, burped and placed his thumb back into his mouth. I laughed as I placed him on the bed and changed his nappy. He slept the whole time, as I recall, he slept right up until the next morning.

“The doctor will be here around 11 a.m.,to give baby the once over, and then you and your bundle can finally go home.” She smiled. After three days in the hospital, this was music to my ears. I began to pack, checking the baby and the clock every few minutes.

“Has he been sleeping like this since he was born?” The doctor stood at the foot of my bed. I nodded. He took the baby in his arms, smiled at him, handed him to me and asked me to strip him. I did. The baby didn’t whimper. His eyes still shut, the doctor checked his reflexes and hips. “Funny little fellow, not a word out of you.” He handed him back to me. I began to dress him.”OK, Mom, you can go home. He’s perfect. Enjoy him,” and off he went, investigating other newborns on the ward.

A first-time mom, I was nervous about leaving the hospital. I knew from the moment I found out I was pregnant that I would be responsible for this baby, me and only me. I quickly adapted, loving him was so easy, caring for him was simple, providing for him was definitely the hardest.

Three weeks before my 21st birthday, I spent one week in hospital with my now 3-month-old baby. He had what appeared to be meningitis. I was scrubbed down, masked and covered from head to toe before I could see him. I’d never known real fear before that day, but fear and I would become old friends in time.

Three days passed when they finally told me my baby actually had a viral infection. Experience would teach me that, when doctors tell you it’s a “viral infection,” the truth is they have no clue. They treated my baby with different types of antibiotics, and luckily one of them worked.

By the time my 22nd birthday rolled on by, my toddler was toddling. He was a handful! Talking and walking all by the age of 1. I was convinced I had a special, gifted child on my hands. I was right but not in the way I imagined.

He was 18 months old when we began our first steps on the road to a diagnosis. I honestly thought he was just having a hearing issue. I was determined to get him grommets or hearing aids, whatever he needed. I was willing to fight tooth and nail to get it.

In the five years that followed I was called “over-anxious,” “ridiculous” and “overreacting.” Oh, and my favorite line: “Every child is different.”

It took us that long to find the correct diagnosis for Ethan. In March 2008 Ethan was diagnosed with a rare genetic terminal condition called hunter syndrome.

I sat listening to that same doctor who met my baby five years previous. He was telling me and my now husband that “there’s nothing we can do, there is no cure. Take him home and love him. I’m so sorry.”

My child is terminally ill, battling a condition that takes him bit by bit until there’s nothing left.

My beautiful, bright, funny child is missing an enzyme, (or part of an enzyme), an enzyme that more important than you could ever imagine. His body pays a high price. He has joint and mobility issues that will eventually require a wheelchair or a specially adapted buggy. Every organ in his body is damaged and over-sized; all will require regular check-ups and surgeries. His airway is badly damaged, making even the simplest of surgeries begin with a permission form, stating that we, the parents understand, due to complications that may arise form Hunter Syndrome, that this surgery may be the one that causes his death.

His brain is affected too, meaning as Ethan ages, his mind will go, not unlike Alzheimer’s. He will even forget how to swallow. He will stop talking. Every week, he gets a man-made version of this enzyme which slows down the physical progression of Hunters, but cannot prevent his inevitable brain damage.

I didn’t know it when I first met him, but my baby, my son would be my teacher. He would bring me into a secret world, a world where everyone is loved, everyone has gifts and everyone is equal. He would show me all the abilities in a world full of disabilities.

He lit a fire in me I never knew was there. He gives me strength, hope and unconditional love — I guess I was right all those years ago; I do indeed have a gifted, special boy.

So when you read this and you wonder how I’m so strong, it’s all him, it’s all my boy, Ethan, and I am lucky and privileged to be his mommy.
Originally appeared on The Mighty




I’m Ger, mother to three wonderful boys and wife to D. We live in Galway, Ireland. I have always loved to write recently however I have began to write about our journey as a family of 5. In 2008 my eldest son Ethan was diagnosed with a rare genetic terminal condition called Hunter Syndrome, we have been learning to live, love and laugh since then. I have been writing publicly for almost a year now on my blog, It’s Me Ethan. Find me on Facebook and Twitter.



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