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Monday, January 6, 2014

What do you say?


This month is tremendously special to me. One; it is the month I will bring my two daughters into this world and the second; today, is the day I will bring my memoir into the world. In many ways, it is very apropos. I've not shared this with many friends or family, but I'm scared of the uncertainty of my delivery. Having given birth to my son, who is the heart of my memoir, I learned that life too often gives us the unexpected.

And I'm fully prepared for the unexpected in my delivery. Oh, close friends and family keep assuring me 'you'll be fine'...and I will. Because having my son with Down syndrome, well my life is better than fine--it's joyous. Yet there in the back, front, and side of every portion of my brain are the thoughts about these girls. Do they have any surprises in store, as Rory did? How will I handle it if they do? How will others handle it if they do? My husband and I are so fully prepared, we've even spoken with the doctors about how to handle our delivery and the discovery of any potential diagnosis.

With my due date imminent, it has brought me back to the day of my son's birth.

 
So, I take you into a part of my memoir where I reflect on how I, and those around me, handled the news of my son's diagnosis. 


What Do You Say?

            There was a custom when employees at my school had a baby. An email would go around. It would read; “____(Names) welcomed _____(fill in baby’s name) at ____(fill in the date and time). The baby is _____(fill in height and weight. Mom and Baby are doing well.
When I was trying unsuccessfully to get pregnant, I would get pains of longing every time I read those emails. I imagined an email going around with the name of my child. His or her height and weight.
            So the morning I had Rory, the first phone call I made after my sister, was to my principal. It had to be close to seven in the morning, and I’d given birth not even six hours earlier. But I wanted my email. I wanted my phone call. I wanted my friends and colleagues to know that "On September 29th, at 12:25 in the morning. Christi and Douglas Caldwell welcomed Rory Celestino Caldwell into the world. He had come in weighing 7 lbs ½ an ounce and was 19 ½ inches long. Mother and baby were doing well."
            That phone call was made before I met Rory’s pediatrician. Before the suspicions of Down syndrome. Before the confirmed karyotype screening. I got my phone call.
            I’d learn later that the email hadn’t made it around to the entire school. It had somehow, uncharacteristically only been sent to the social studies department. I didn’t even get my email.
            When you have a baby, the feelings you want people to have are feelings of joy, excitement, happiness. When you have a baby and learn your baby has a disability, those feelings you yourself have of joy and excitement are all tempered with fear, sadness, and grief.
            The day Rory was born, I remember the almost tangible cloud hovering over the doctors, the nurses, the visitors I received. There were no genuine smiles, only forced expressions of happiness. You could see it. The brittle lift of the lips that could almost be shattered if they so much as moved the wrong way.
            Reflecting back, I wish people had smiled. I wish they had celebrated. I wish they had congratulated me and meant it. Because, ultimately any child’s life should be celebrated because their life is no less special, no less perfect.
            Instead, I find myself becoming the subject of what a person wants least in the world—pity. It is there from family, friends, and it is never spoken aloud but there are the silent sighs of relief--unbreathed in your presence, but with them when they’re alone—that it wasn’t them.
            I find myself hating the thoughts that I was surely the source of gossip.
            I remember sitting in my kitchen, in front of the computer, trying to write an email to one of my good friends who’d gone through fertility treatments the same time I did, pondering what I would say to her. What would I say to my colleagues who’d only heard my phone call reporting that all had been "perfect?" I was at a loss. I just wanted to say, my beautiful little baby is perfect and tell them of all he was doing. Tell them how I was doing. Yet, there was the reality of introducing the fact that my child has Down syndrome. How do you do it in a way that it doesn’t become the focus of your child’s birth?
            I had this vision in my head of people finding out the news. "Did you hear? Doug and Christi’s baby was born with Down syndrome.” There would be gasps, there would be gossip. Maybe some people jumped on the Internet to research Down syndrome. It was probably juicy morsel of information to most of the people who learned our son had been born with Down syndrome. To us, however, it wasn’t gossip—it was our life. It wasn’t, like it was for strangers, a conversation we had, and then moved on from. It was the rest of our lives.
            I went through a series of emotions in sharing Rory’s diagnosis.
            When I learned Rory had Down syndrome, there was a part of me, which felt inclined to share that information with anyone and everyone I spoke to. But by anyone and everyone, I meant strangers. Not my friends or family. Those people I didn’t know how to tell. I went on a walk with Rory when he was just a week old, and my neighbor came out to congratulate me.
            “He has Down syndrome.”
            I remember her genuine shock. Her mouth opened. She stumbled over her words; she didn’t know what to say.
            We had to go to our local hardware store….because, as though we didn’t have enough stress in our life, we were trying to sell our house. A worker came up to me and was oohing and aahing over my baby. I felt the need to tell her of Rory’s diagnosis. “Really?” She sounded surprised.
            Doug’s Uncle Louie owns an Italian restaurant. When we first brought Rory home from the hospital, both Louie and Doug’s sister, Sara, sent trays and trays and trays of food to us. One of the deliverymen came in with the order.
“He has Down syndrome.” I don’t even remember if he said anything.
            There were people I didn’t know how to tell. I didn’t know how to tell my friends and colleagues.
            I didn’t know how to tell my extended family.
            I didn’t have the energy for it.
            I had wanted to send around birth announcements. Yet…my grief, my confusion consumed me. I never got to send those announcements. Rather, I failed to send my announcements. That is my fault. I just didn’t have it in me.
            I wasn’t ashamed of my son. I was torn. I wanted my uninterrupted joy. I wanted my son to be celebrated. I didn’t want people to whisper about "Christi’s baby." I didn’t want people to feel bad. As sad as the news of Down syndrome was to me, I didn’t want pity. I wanted people to just see my son as they would any baby.
            I didn’t want people to have to weigh their words. I didn’t want people to say they were sorry. Because sorry implies mistake. Rory wasn’t a mistake in any regard—just the opposite, really.
            The feelings of telling everyone, of sharing that personal piece of information, faded as the weeks and months passed—as I came to know my son. I came to appreciate him as a little miracle. It was in the way my fingers itched to hold him every moment of every day, the way I’d wake up each morning like a child at Christmas and rush to his crib to see him smiling back. Suddenly Down syndrome wasn’t such a big deal; it wasn’t a big deal at all. It began to feel odd mentioning Rory had it, because he was so much more than Down syndrome. He was laughter. He was smiles. He was ticklish—from his toes to the crevice in the inner portion of his upper leg. He was a hard worker.
            We made the decision as parents that to announce Rory had Down syndrome was to let it define him. And that wouldn’t be fair to Rory. It wouldn’t be fair to any child for that matter, to define them by something they happened to be born with. He isn’t a Down syndrome baby, as many people who are unfamiliar with people-first language say—he is just a baby…who happens to have Ds.
            I would learn later that unless you have a child with a disability, that such silence won’t make sense...
             

What I Wish It Had Been....
At some point, I'll deliver my twin girls. I don't know if they'll have a surprise in store for me. But whether it is me, or someone else you know in life who gives birth to a child with special needs, the best advice I can give is the following:
~Just smile and laugh and be happy. Celebrate the life of the child(ren) because all life is great and should be honored. 
~Anything you would do for a woman who gives birth to a typical child...do it for the mother of a child with special needs.
~Visit them either at home or at the hospital. (And again, do so with smiles and laughter). 
~Don't pity the family because it is an emotion no one wants. 
~And, if you're feeling generous, bring them food and balloons... : )  

About the Memoir:
Uninterrupted Joy: Memoir: My Journey through Infertility, Pregnancy, and Special Needs: January 2014

The following journey was never intended for publication. It was written from a mother, to her unborn child. The words detailed her struggle through infertility and the joy of finally being pregnant. A stunning revelation at her son's birth opened a world of both fear and discovery. This is the story of one mother's love and hope and... her quest for uninterrupted joy.

Dr. Brian Skotko Co-Director Down Syndrome Program, Massachusetts General Hospital says:

"On an exasperating quest to have a child, one mother finds perfection where she least expects it. This book is an emotional companion for any couple feeling alone, with their faith shaken, after receiving a postnatal diagnosis of Down syndrome for their child."

Links to Purchase:
Amazon (Kindle Edition): http://amzn.to/1lJos0L  
Barnes and Noble (NookBook): http://bit.ly/1bJuc4Z 
Smashwords: http://bit.ly/196TDm0 

13 comments:

  1. What a lovely piece of writing and story. I wish you the best in the birth of your twins and I hope Rory is excited for his new sisters!

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    1. Thank you so much, Jennifer! Rory has begun to really grasp the concept. At night, he will touch my belly and say "Night, sisters". : )

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  2. That was beautiful Christi. He is a beautiful child and you and him are very lucky to have eachother. May these two girls add more joy and happiness to your little family when they arrive.

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    1. Thank you kipha! I wish I could have glimpsed at my life five years into the future and seen just how happy we would be. And we'd despaired of ever being able to have another child, so these girls, like Rory, are true miracles in every sense. : ) I'm so excited to meet them.

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  3. What powerful beautiful words, Christi. Thank you for sharing your story. How lucky you and your family are to share your beautiful son with the world. Wishing you the best with your two little girls. What fun you'll house will be full with happy children.

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  4. I will echo the others. That was lovely and powerful! You're absolutely right, the birth of a child should be celebrated, without caveat. Rory is a great little boy, and you're lucky to have each other.

    Good luck with your girls, I know you're prepared for everything, but no matter what, celebrate. Tweeted and shared.

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  5. Beautiful story and a beautiful, lucky child to have you as his mother. I am halfway through the memoir and it is wonderful. I'm so excited for the twins!! Tweeted and shared.

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  6. I’m so happy that you told your story and deep your feelings. I can’t imagine that anyone would not celebrate the life of Rory no matter what his diagnosis. Sadly, those are the people who are ignorant and need to be educated. Downs children are happy and loving and kind. When the stork brought him, he knew that Rory needed a Mommy and Daddy who really, really wanted him and would love him no matter what. Give Rory a hug and kiss and tell him how many people truly love him and are so happy he’s here in the world. His mission will be to teach others the meaning of true and unconditional love.

    I understand your fear for your daughters, but I know they will be born just fine. If we could put in an order for our children to look or be born with certain “specifications,” wouldn’t that take away a lot of the excitement and joy of childbirth?

    Bless you for your bravery and love. I’m so very excited for you!

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  7. How exciting! I just heard that Christi may be in labor with the girls, so we probably won't hear from her again today. If we get news to share, we'll pass it along. She's getting her email this time. :)

    Sending lots of love your direction, Chris! XOXO

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  8. Such a beautiful story. I am so so glad we have connected with each other.
    Love and prayers to you, Christi and your little girls.

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  9. Oh my gosh, I'm blubbering like a fool. What a touching story! Praying for you and the babies and I'll share this for you! Hugs.

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  10. Beautiful, touching story Christi. Now I hear you might be in labor, so I hope you can feel all the prayers and positive thoughts surrounding you and your babies.

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  11. Just heard from Christi, and the doctor has decided she won't deliver the girls today. The goal is to go as long a possible so they don't have to spend time in NICU, or else they want to reduce that time.

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