I didn’t see my daughter for two days after she was born. I had a minor postpartum fever from a light hemorrhage during birth. When finally allowed to see her, I stood at the side of her heated NICU bed and thought her the most beautiful thing.
Events swam around me at that time, in that room, at that point of the day. Doctors had come to point at my daughter’s features and tell me they were “abnormal” this and “abnormal” that. But all I saw were long-fingered piano hands and her small face looked like her grandpa’s.
She was such a fighter already! Two days old, and she’d already fought the nurse staff and doctor. She’d purposefully turned herself over to her belly to relieve pressure from the intestinal obstruction she was born with.
I remember when my husband and I brought her home from hospital at seven weeks old. No matter that she kept improving in small measures. We were told to “enjoy the time we had”.
She’d already had three surgeries by then. At four days old, a small bowel resection to remove an intestinal blockage and a damaged appendix. At two weeks old, a copper coil placed by catheter to repair a PDA in her heart. At six weeks old, a feeding tube.
The final NICU doctor my daughter had insisted she wouldn’t live past eight weeks of age. I was put in a step-down room with scant instruction on how to give her my pumped breastmilk by g-tube and two nights to learn her care by myself. Then he sent us home for her to die.
Some doctors get it right and are very supportive. But I wish the doctors who fear to hope would take more care with parents of children with diagnoses such as ours. Miracles are possible, even in their world where they don’t see them every day.
Because, while I didn’t sleep for three weeks straight while I waited for my child’s soul to leave me, I also watched my daughter keep living.
I think something about those first weeks on my own scarred me. I still have a fear that burns in my stomach that maybe I won’t find her breathing some unthinking morning or unsuspecting quiet night. I’ve been frantically working to let fear go.
I lived in that stasis place for our first year together. Waiting for her to die. She didn’t die. I felt guilty for enjoying our time together, because surely it wouldn’t be mine anymore the next minute, or the next.
I tended her. I resented having to take care of my child who wouldn’t be mine at any time. Yet I was also told I loved my child too much, that I shouldn’t hang on so tight. But I loved her too tightly anyway because she deserved all of my love I could give.
I’ve packed lifetimes into every day that I’m blessed to hold her. But ALL life is stolen time, isn’t it? Nobody knows when death will claim them. Nobody.
Five months in, the stress still deadening me inside, it finally came to me that I’d spent five full months mourning… my living child. I couldn’t keep on that way. Screw the doctors who told me her life was impossible, what did they know? They can fix a body, but can they heal a soul?
She’d already survived surgeries by then. She’d lived past what she was “supposed to”. I’d successfully been breastfeeding my child who “wasn’t capable” of using a bottle or nursing. My little girl and I were turning that “failure to thrive” assumption around.
And some unsuspecting nurse from the NICU days had not-so-gently made me face having to grow a backbone. Over those first months, I thought on how that nurse had told me it was for ME to MAKE SURE my daughter received the care I felt she deserved.
By six months old, I started telling doctors who were deadest on my daughter’s weaknesses that they were wrong. Never mind they didn’t believe me. I watched, my heart angry, when they gave me that wan, sad smile during her appointments. That I was wrong. That I had false hope. That it was just a matter of time.
Screw them. I used my research background to speed our progress and became a sponge. I looked up dietary differences and needs, and alternative dietary care. I read up on what it takes to reach milestones so I could build preparation steps into my daughter’s therapies on my own. I read all I could about Trisomy 18. I sponged up all the knowledge I could from other families’ stories in the support groups I joined.
Doctors stopped mattering so much to me. Occasionally there might be one who saw what I could see, but largely they just didn’t. In the way the majority of them treated me like desperate nothing, I in turn began to treat that majority like medical tools. I clearly saw the healthy outcomes I intended, and it’s towards that I brought things I wanted to try to doctor attention. Hit a snag, try another way. They kept working, so I kept pushing everyone and everything forward.
At eight months old, my daughter got her first positive clinical report.
The genetics doctor she saw for a progress appointment that month called her in his notes not by “8-months-old female”… but by name. That was HUGE. I’ve read every clinical note in her file that are mine to read. And that report, after eight months of life, called her BY NAME.
He used her NAME! I felt light, full of joy. A medical professional finally recognized Aubby as a person. And then other reports began to use her name.
Months nine through her first birthday were happy ones. Aubby kept growing. We started practicing solids by mouth at seven months old, and by ten months old found a rhythm so she learned to eat solids. She breastfed her whole first year. She was a chunk by then!
My little girl who’d come into the world 6lbs 8.6oz and 21in at birth had grown to 17lbs 15oz and 28in at her first birthday. And she stayed up until her birth time at 2:04AM to enjoy her made-from-scratch yellow cupcake with cream cheese icing, too.
There are so many lights “at the end of the tunnel” — at whatever point in the tunnel you are right NOW. Count every breath. Love every breath. Count every meal. Love every meal. Count every nap, every diaper, every arm cradle. Love them all.
If there’s one thing we learn to do perfectly, it’s learning exactly what LOVE in its purest form is. Our babies ARE LOVE in its purest forms. Our trials teach us to care endlessly, never giving up, without regard for self, and with compassion. For our best goods, and for others. Truly, where does the tunnel begin and end when its real purpose shows you what love is?
What I’d tell myself then with what I know now?
You are MOM/DAD. Roar it. Be it. Because it takes YOUR LOVE to carry YOUR BABY through. It’s YOUR love that will face the impossible and make miracles.
Don’t be afraid to grow a backbone.
Don’t be afraid to question the professionals you meet. It’s up to YOU to dig into what they know, and it’s YOU who must bridge the gaps in care. You’ve been given the task to advocate for your baby, the task of understanding difference, and the task to change the world with compassion.
Above all, DON’T BE AFRAID TO LOVE YOUR CHILD. Loving them is what will give you strength to face all odds. It’s worth it. It’s worth every pain, every smile, every surgery that will make them better, and worth every crushing fear.
Never give up. Never, ever give up. YOU ARE ABSOLUTELY THAT STRONG, I promise you.
My daughter reached her first birthday. Despite the high-risk pregnancy I was told I should abort. Despite a bowel blockage and growth in the 33rd percentile on ultrasound.
My daughter, with her high palate and small chin and weak suck, nursed for a year. My Aubby, who I was told would be a vegetable, said her first word the day she turned eight months old.
My little girl who was never going to learn to roll over, did roll over at eleven months. At two years she’s figured out crawling and cruising, and is starting to learn to walk.
She’s almost three years old now, and we’ll be having her first IEP soon so she can begin school this Fall.
My baby eats broccoli and peas and green beans, because the first favorite color she loved was green. But now she loves yellow. She’s the snuggliest little gal I know, and gives me the squinchiest grins in the world.
There’s not a person on this planet who can convince me miracles are magic things that never happen.
Keep faith. Believe in your baby. Just follow their lead, no more and never less than that.
Work with strengths and how your child naturally approaches things — and note what’s weak — but find the common point that’ll encourage growth toward developmental goals.
Cherish them, cherish their place in your life, cherish how they change your heart.
Your Little Love will take you where you never could have imagined. Let them.
I wish you the best wishes,
Mother to Aubby Plummer, Partial Trisomy 18
Find us at ChromoChallenges.com