The Promise I Made My Newborn as We Cried Together


 “I asked the Zebra,
Are you black with white stripes?
Or white with black stripes?
And the zebra asked me,
Are you good with bad habits?
Or are you bad with good habits?
Are you noisy with quiet times?
Or are you quiet with noisy times?
Are you happy with some sad days?
Or are you sad with some happy days?
Are you neat with some sloppy ways?
Or are you sloppy with some neat ways?
And on and on and on and on and on and on he went.
I’ll never ask a zebra about stripes…again.”

                                                               — Shel Silverstein

My daughter Addie was born early. Three weeks early. I started having contractions in the parking lot of an Olive Garden while Frank Sinatra was singing on the radio, “Let’s take it nice and easy…” It was almost Halloween, and that night in the maternity department all that was on TV were old scary movies. Addie was delivered into this world in the morning “sunny side-up,” as they described it to me. It was not a dramatic delivery. The biggest issue initially was correctly the nurse who thought I said Addie’s middle name was “Tracy” not “Faith.” To which she responded “Oh, that’s so much better…” (Sorry to any Tracys out there.)

Addie was a little bit of a baby — tiny all around with little waves at the bottom of her hair. She struggled a bit with her blood sugar being low and then with feeding. She had some problems swallowing and latching on. She cried a lot. We found that the only way she didn’t cry was if she slept in something moving. She was trying to tell us something. We just didn’t know what it was yet. She was hospitalized two times within her first month of life, then again two months later. She had many specialists, many appointments and many hospital stays. After her third set of ear tubes, an adenoidectomy, a GI biopsy and a lung biopsy, it was determined that she had ciliary dyskinesia, a rare lung disorder treated a lot like cystic fibrosis. It means the cilia in her body aren’t all intact and can’t rid the body of things that would cause lung infections or ear infections. We also found out she had colitis. She was allergic to milk and soy (she’s 4 now and now not allergic to either thankfully). But Addie still cried. She had a lot of trouble feeding and eating and was delayed. Mysteries still lurked. 

I remember the phone call well. It was a Thursday morning at work. Her neurologist wanted to review her MRI. I didn’t have time to Google. I grabbed a piece of paper on my desk and started writing everything I possibly could. The paper had these words written sporadically: “Brain Malformation,” “Vascular accident?” “Trauma?” “May never know – result is the same,” “Static but unknown future,” “Mild,” “Unilateral,” “many small folds”, “unique pattern,” “may blossom with continued therapy,” “will know more as she grows,” “high risk of seizures,” “mild CP?” I needed the following: information and what to do specifically. I specifically saw the words “may blossom” and felt those two words were the hope given to us to have faith in the doctors and faith that the future would be bright.  

1031000941-1

I remember being in my bedroom. It was nighttime, and Addie was crying. For some reason, this night, the swing wasn’t calming her. The swing was supposed to be the lifeline. It sat next to my side of the bed. If I heard it start to slow, I knew to get up and change the batteries as soon as humanly possible.

This one night, the swing itself was working fine mechanically, but the swing’s magic was not working. So I did the next best thing, and I held her and paced. We walked back and forth across my room. At one point I started crying with her. I don’t know why. I wasn’t feeling sorry for myself. I know I was overtired. But it was something else. I couldn’t put my finger on it. We just cried together; we cried hard. I let myself cry with her. I don’t even know if she knew I was crying. But we had this long moment together of pacing and crying. I wanted so badly to help her. I wanted so badly to “fix” what was wrong. I didn’t know “what was “wrong” with Addie yet, but looking back I truly believe it was in that moment that I knew something was seriously going on, and I let myself cry. And Addie let me pace, hold her and cry. We let ourselves have that moment together. This was nothing monumental, but it was poignant to me. When she — and I — finally calmed, I held her tight and close to me. She was sweating, her heart was racing and I whispered lovingly into her ear, “It’s OK, Addie. Mommy knows there is something wrong. You don’t have to fight it; I will fight for you from this moment on. I promise. I love you as you are.” And just like that – poof! Like when you make a wish on a coin and throw it into a wishing well, I made this commitment to my daughter in her ear, and I let it go. And I never looked back. 

I later found out the actual diagnosis Addie was given was called “Polymicrogyria” or PMG. This means “many small folds.” I find it fitting; my Addie-bug is indeed full of many small mysterious folds — this is her personality. This makes sense.

Addie is now 4 and Audrey is 6. Addie is doing great. She has a service dog named Data and is in a Pre-K classroom in a public school system. Her dog goes with her to school. She has occupational, physical and speech therapy. She loves her big sister to pieces. She was diagnosed on the autism spectrum along with the other above diagnoses, but she’s excelling. I’m thankful for the day I let it go. I’m thankful for the day I accepted it all and moved with her and loved her for her — for all her unique stripes. To this day she hasn’t stopped moving, and I haven’t stopped moving with her.

addiedata

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

Why a Taxi Ride Taught Me an Important Lesson About Disease and Grief

It was at the end of a short, intense visit to Memphis in June 2012, midway through my project. I’d been traveling the country, meeting people living with multiple sclerosis, hearing their stories, meeting their families and taking their photograph in candid moments. That weekend was brutally hot and full of challenges. But one moment [...]

7 Easy Ways to Support Colleagues With Mental Illness

May is Mental Health Month. This year it’s of special significance to me since I recently lost my brother Spencer, who lived with schizophrenia. It’s been heartbreaking. Like many people with a mental illness, Spencer was unable to make a living. I know this contributed to his despair. It’s a shame because he was bright-eyed and intelligent and had [...]

When a Teacher Said a Photograph of My Relative Would ‘Scare’ the Students

It started over dinner when my daughter, Caitlin, was deciding what to bring in for “Show and Tell” at school. Remembering her recent visit to my office, she asked if she could bring in the poster of her cousin that hung on my door. Excited about her decision, I agreed and told her I would [...]

5 Essential Tips for a Soon-to-Be Special Needs Mom

I walked into the conference hall and stopped at the welcome desk.  After getting my packet and name tag I headed into the main lobby. I saw familiar faces and we exchanged hellos. DD (my nickname for my dear daughter) was with me and was working the crowd already. I made my way to the [...]