LTYM

So… as I’m sure many gathered, I was not chosen to be a presenter at Providence’s inaugural Listen to Your Mother show. Instead, I am still choosing to participate. I will be going to support some of my favorite friends and bloggers as they share their stories and undoubtedly make me laugh, cry and reflect on life as a woman, a mom and a wife. HERE is the announcement post!

Because I wasn’t selected to read, I will share my piece here with you now. It may seem familiar, as it is a brief edited and slightly different version of my first post.

I’m not sure where to begin. I could go back to camping.  That amazing 2-days my husband, Dave, and I spent in Maine, creating our beautiful daughter.  It wasn’t really romantic, but it got our minds off of the previous 6-week troublesome time, which began with an early pregnancy miscarriage- often referred to as a chemical pregnancy.  In the weeks following, when the cramping eased, and the doctor reminded me that we could try again right away, we knew we needed a weekend away.  With our handsome puppy at doggie daycare, we took off to Wells, Maine.

It was a beautiful weekend.  And we made Addie.

A few weeks after we got back, I got a faint line and after watching the timer flash for 3 minutes “PREGNANT” popped up on the digital screen.  Excited, but scared to repeat the past, I tried to hide my findings from my husband; but, a few hours after he went to work, I texted a picture of the test to him.

***

Hearing her heartbeat was the most beautiful music ever created.  Rapid and deep, hearing her life beginning in me was one of the best days of my life, and over the following months, I took the tests, ate well, gaining only 26 pounds, and was then blessed with a beautiful, but long, delivery at 38 weeks, 5 days.

A clear-lunged Adelaide Eileen came into the world April 17, 2012 at 10:32am at 7 pounds, 7 ounces and 18 inches long.

18 inches is in the 5th percentile for height in a newborn.

At Addie’s one month check up, her head was in the 75th percentile, weight 10-25th percentile and height still in the 5th.

At two months, her head was in the 90th percentile, weight 25th percentile, and her height had dropped below 5th.

I cried.

We left the doctors’ office with an appointment for a fontanelle ultrasound to check for Hydrocephalus and another for x-rays of her long bones.  At 5’7 and my husband standing 5’9, I was unsure how we had such a short baby, but her head was our main concern.  Along with the appointment at the radiologist’s office, Addie left the office with thighs sore with vaccine shots.  Later that night, June 19, 2012,  a fever of 101.5 struck, and was just the beginning.

***

At 7pm, June 21st, we arrived at Hasbro Children’s Hospital in Providence, RI. Addie presented with a mild-grade fever, lethargy and a lack of appetite. She endured hours of IVs, needle pricks, blood draws, a CT scan and four, yes four, unsuccessful attempts at a lumbar puncture.  Without the spinal cord fluid needed to run a meningitis test, Addie was started on broad spectrum antibiotics for the night.

A tentatively negative read was done of her CT, for everything, including Hydrocephalus- a concern due to the rapid growth of her head. Although this brought relief, there was another test we knew needed to be done for her general heath (an x-ray of her long bones), and there was the issue of what was making her ill at the present moment.

***

A call from our pediatrician to the attending physician in the hospital prompted the bones of her body to be x-rayed, specifically the long bones in her arms (upper) and legs (thigh), pelvis, spine and skull, which took all of 10 minutes and we were wheeled back to our room.

A geneticist came to do some measurements. I felt hot and sick. There were tears forming, but, as a mother, I had known Addie was too short for her age. We discussed nothing specific, only mentioning that there could be a genetic anomaly, and that’s why she was called in to look at the x-rays. As the doctor left the room to read the x-rays herself, I held my knees to my chest and practiced breathing.

When she returned, I was cleaning out my breast pump pieces in scalding water. She pulled a chair up to talk. I stayed at the sink, burning my hands in the water. When she didn’t continue her diatribe, I knew the x-rays had shown something. I finished washing the bottles and made small talk. If I never heard what she had to say then she had never said anything. Right?

“After reviewing the x-rays with the best radiologist in Rhode Island, we have both confirmed the diagnosis of Achondroplasia,” Doctor.
“What’s that mean?” Dave.
“Dwarfism,” I said. Blankly staring at something that wasn’t there.

Nurses were sent in to do a blood draw on my 9 ½ week old baby. It took 7 attempts and two days to complete. The conclusive results came back in a few weeks…

The most common skeletal dysplasia is achondroplasia, a short-limb dysplasia that occurs in about 1 of every 15,000 to 40,000 babies born of all races and ethnicities. It can be caused by a spontaneous mutation in a gene called FGFR3, or a child can inherit a change in this gene from a parent who also has achondroplasia. The average adult height for someone with achondroplasia is a little over 4 feet.

The information runs far and is quite plentiful.  In the United States, approximately 10,000 individuals are estimated to have achondroplasia. It affects about 1 in every 40,000 children. However, this number varies, depending on the source. Eighty percent of all little people have achondroplasia. Approximately 150,000 persons have achondroplasia worldwide. The worldwide population of little people is approximately 190,000.

People don’t know what to say- I’ve already encountered that. But if I may be so bold as to make a suggestion, if you don’t know what to say, say nothing.

I can’t say that I’m not scared, or angry, or confused, or hurt. I can say I’m so happy, blessed and in love. Little people live normal life expectancies and can do anything they want.  It’s not a disease. She does not need to be cured.

She cannot ever do gymnastics.  If I said this didn’t hurt me, I would be a liar.  I was a gymnast, and some of my fondest memories are swinging my long and lean body around the bars, sleep over camp and long drives to state meets. She cannot participate in other little girls’ gymnastics parties. But, she can swim- and I look forward to every mommy & me swim lessons like it’s Christmas day!

And here I am. I’m angry.  I’m really angry. I’m so ashamed of myself for, potentially, making life harder for her.  I am, in my mind, at fault. I want to help her be the strong girl I know she is, but how can I do that when I’m falling apart on the inside? I’m angry this will impact her. I’m angry other children won’t get it. I’m angry that people in her family, at least not everyone, will understand and respect and be “ok” with her stature. I’m angry people may point, laugh, call her names, misunderstand her, and hurt her. I’m angry, damn it. I really am.  Perhaps some of my fears are masked by this anger, which I’ve always been so quick to feel, but for now I’ll call it a pure emotion and hope it unfolds well.

As I watched her sleep in her hospital bed, I saw she’s the most beautiful girl I’ve ever seen. She has my little nose and crooked pinkies, and Dave’s ears and lips.  She is an angel. She’s a perfect combination of the man I will love forever and myself. Maybe she’s not your ideal baby- but she’s certainly my ideal: happy, healthy, with dimples, bright blue eyes, 10 fingers and toes, sweet baby coos, and a sigh that ends with her collapsing on my chest.

In truth, as I wrote this, she was getting better from whatever brought us to Hasbro in the first place; No fever, less lethargic and eating much better. But she was still there. I battled with her being sick and getting a lifelong diagnosis that I’m not sure the right way to process.  I reveled in the good news of no hydrocephalus and the shock of knowing my daughter will be physically different from other children.

I am scared of my reaction to other parents, when they tell me of milestones their children are crossing, as Addie’s motor skills will be slightly delayed. I am wondering what life will bring to her and how I can make sure she has the best one possible- as any parent does for their child.

Over the past few months I have tried to take all the information thrown our way in stride, and remember that some questions will remain unanswered until she reaches a certain age and the universe reveals its mysterious ways.  I’ve contemplated if I had known she would be a little person before she was born, would I feel differently… no.  I wish I had had the time before she was born to process, as it is hard to shed tears when I’m looking at her beautiful face; but I will let my emotions take their course, rely on the love Dave and I share and the information at hand to be the best parents we can be.

And so, I conclude.

‘A’ is for Adelaide and Achondroplasia.

I want to say that my writing is too specific, but I think it has to do with my presentation skills (or lack there of), as well as the fact that the women I know who were selected are A.MAZ.ING. Not just you’re such a good writer, I could never write like that. More like I should never write again because I am a disgrace! I say this in jest. So many of us are not only wonderful writers (and readers), but we are fantastic daughters, mothers, wives, parents, siblings and aunts. We are free spirits, organized and brilliant with all we do (and sometimes, not- but don’t tell).

I will tell my story for a long time… forever, in fact. I will share about my fears and insecurities, because it’s OK to feel that way and I hope all parents know that when they receive any unexpected diagnosis.

I hope to see all the seats filled at the show this year. Buy your tickets HERE and come sit by me… I’ll have tissues with me. And in case you’re wondering… I’ll be back to read another piece next year! I think I can… I think I can… I can!

10 Comments

Filed under Community, Parenting/Family/Lifestyle

10 Responses to LTYM

  1. That is a beautiful and motivating piece!!! Brought tears to my eyes! You are never failing her- you are simply amazing! Thank you for telling your story!

  2. That’s is beautiful and moving. Thanks for sharing it with us.

  3. I love this so much! And I can only imagine how scary it was to read this on a stage. I’m so glad you shared it here.

  4. Oh Chelley, you are not failing her in any way at all. I admire you for being able to stand on a stage and share this, your story, Addie’s story. I’m very honored to be able to read it here. xoxo

  5. Your piece is truly a work of art, a journey in words that you so willingly and with such great strength of heart and spirit take us all along with you. Your Addie is your muse and, in turn, our muse. Thank you for sharing your magnificent piece, for baring your soul and filling us with your wisdom. I was hoping, hoping, hoping that you would share your piece… thank you.

  6. Hi. I’m new to your blog, I just found it through Rhody Bloggers. This is an amazing story of such strength and honesty. You are an amazing writer. My son has autism and my daughter has Down syndrome- I know in my own way how it feels to get results like that. She’s absolutely beautiful, and I’m excited to get to know you and her better.

  7. Thank you for sharing this with us, and your journey with Addie! Just beautiful.

  8. Beautiful piece, as always. You’re a brave Mama and I know Addie is lucky to have you (and vice versa)!

  9. Pingback: Listen Up! #LTYM | A is for Adelaide and...

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