Dear Little One,
It was 4:00 am on a chilly and oddly windy Wednesday morning. I hadn’t slept much the night before: partly because I was a bit over tired but mostly because I was ready to see your face. Your grandmothers and I had spent the whole day before getting ready for you after leaving the doctor’s office.
I thought I had another week. She said, “Go to the hospital and register. You’re having this baby tomorrow.”
No one really bought essentials to your shower the week before. I didn’t have diapers. I didn’t have a car seat carrier. I didn’t know that I would need so much more than just those basic things. What I did have was a lot of cute outfits and wipes. Lots of wipes. I didn’t know I would need more items than what the people around me could understand the use for.
I thought I had another week.
I got to the hospital at dark o’clock and checked in. I wore a navy blue swing dress with gold buttons on the back. The receptionist commented on how pretty it was. I thought it was pretty myself. I needed something pretty to calm my nerves. I didn’t know that my uneasy familiarity with hospitals would start on this day. The grandmas sat in those waiting room chairs with the wooden arms and nervously smiled as I walked through those double doors. I don’t know who was more afraid, me or them. The nurses smiled and I was silently terrified. You were oblivious and oddly still. This was usually party time for you in there.
I thought I had another week. I would be calmer in another week.
Two epidurals, a warm blanket and a chatty nurse later I was wheeled into surgery. Through my extreme near-sighted astigmatism laden blur I listened to the metal clink symphony of sterilized tools and the shuffle of shoe covers on a tile floor. I glanced the incandescent red glow of a digital wall clock through a squint as I heard, “We’ll have a baby in about five minutes”. I was happy and scared and excited and terrified and anxious and nervous and wanted to tell them to wait because I wasn’t ready.
I thought I had another week.
It was 7:53 am. I met a little punkin of a baby girl swaddled tightly like a tiny burrito. I looked at her and said, “Hi Cairo. I’m your mommy. It’s nice to meet you.” I was so happy to see that little face. You were that little face. I noticed a dimple on your chin.
I was glad that I didn’t have another week.
Then the shuffling got more intense and you were gone. There was no light banter from the nurses. I didn’t know that I was having a crisis of my own. I just knew that I couldn’t wait to see you again and kiss that little face and check for that little dimple and be thankful that I didn’t have another week.
It was January 20, 2010. One decade ago. Happy Birthday Cairo. Welcome to Double Digits.
That was the day I became a mom. The splendidness of the moment was quickly overshadowed with an influx of doctors and nurses and support staff gathered around my bed. I should have known that this moment was about to shift into an uncomfortable somberness when the doctor sat down. Doctors never sit down.
“We have some concerns about the baby.” she said.
I learned that day that my daughter, that little punkin baby that I had just met with the cute dimple, had Down Syndrome. The grandmas were silent. I was sobbing uncontrollably. My blood pressure shot through the roof and the tech couldn’t get an accurate read. I had so many papers and pamphlets and support groups numbers given to me in those days before I left the hospital that I couldn’t process it all. All I could do was love my daughter and try to push out the noise.
The noise won.
Those first months turned into years and the years brought new grief. She was three years old before I could say the words ‘Down Syndrome’ in the same context as ‘my daughter’. Trisomy 21 had been my go-to phrase hoping that it would confound anyone who didn’t know better and I wouldn’t have to explain any further. I had no idea that grief could be so consuming but what I really did not understand was how I could grieve a child that only existed in my mind when I had the most beautiful punkin that I could ever ask for right next to me.
That’s when the noise stopped.
I began to channel all the extremes that had once consumed me into positive energy that could benefit us both. I began to teach her. I sought out resources I could use to help her therapies, and there were many. We tried things and if they worked we kept them up. But most importantly, we abandoned those things that did not. The noise could not win ever again. We could not afford to give one more ounce of recognition to ideas or people or energy that would take away our happy.
I started to write. Those thoughts that were held captive in my head flowed easily from my fingertips and soon the dark places lightened. Before long they shined. I stepped out of my comfort zone and let someone read my stories. I started a blog. Then I wrote a book. Next I wrote a workshop proposal for a national conference. I didn’t get the first one, but I tried again and got the next one and every year after that. That was four years ago.
I look back on those times and see how far we have come. Our little family has grown in love and spirit. We lean on each other and block the extra that comes with being a unique family. I have come to channel those things that once weighed so heavily on my heart to bring good into those dark places. I am a firm believer that your experiences bring you to the place that you should be. They are there for your benefit and there is light to be found in even the darkest days.
This year she turns ten. I turn ten as well. It has been one decade since I shed my new mom skin and embraced a new life. We have a new tribe. We have a new outlook. We have all the things that I once thought disability would bar us from and more. But what’s even more great is that we have each other. We took the road less traveled. It has truly made all the difference. (Thanks Robert Frost)
Being a special needs mom has a kaleidoscope of challenges. Learning to embrace the complexity makes the colors even more splendid.
Have a splendid life special needs families. Happy Birthday to me.
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