Loving Emma Jayne

I had everything perfectly planned.

I met my husband eight years ago while I was in college. I knew him as a friend long before I knew him as a lover. As our friendship grew into a love affair that surprised us both, our lives became more and more entwined. By the end of our first year together we had combined our finances in cohabitation bliss. Shortly thereafter, as we moved across the country together, our commitment to each other solidified.

It was three and a half years before we got engaged…and another six months after that before we were wedded. Our marriage was a good five years in the making because as committed as we were, I did not want us to become legally obligated to each other until we were planning on starting a family. Since I didn’t want to be too young for the responsibility or too old to spend the energy, I had to wait for the right time.

I had everything perfectly planned.

On September 7, 2002 we had the loveliest wedding. Our wedding party was comprised of eight bridesmaids, and seven groomsmen who flew in from all over the country. I orchestrated and authored a complex ceremony that involved the entire wedding party, both of our parents, and was administered by a longtime family friend. We all celebrated long into the night, dancing to music provided by my father’s band. We ate homemade cake and fawned over the handmade decorations and favors.

I had everything perfectly planned.

Shortly after the wedding we began our search for a home to call our own. We found the perfect house and sped through escrow…it was meant to be. There was an extra bedroom for our future children.

Our next great adventure would be parenthood. Much to our happiness we conceived immediately - first time even! In private we took such pride in our fertility. We congratulated ourselves for our superior biology. We now find our smugness ironic.

Other than my constant whining, my pregnancy was uneventful. We underwent all the recommended prenatal screenings, diagnostic ultrasounds, and eagerly anticipated each doctor appointment. Everything was normal and indicated excellent fetal growth and health. While I would have hypothetical discussions with other mothers-to-be about poor prenatal diagnosis or birth defects, I knew my opinions would be moot because my baby would be perfect. I wholeheartedly rejected even the slightest possibility that there would be anything wrong with my baby. I knew with certainty that she would be a genius.

I had everything perfectly planned.

At 31 weeks, our ultrasound technician was surprised to note that all of the baby’s limbs measured the same gestational age…apparently such proportion is rare. That was also when we discovered that the baby was in the breech position…a position that I knew she would stay in. While we discussed how to help her move, with a sinking heart I knew then and there that I would be having a cesarean birth. And that is exactly what happened.

My perfect plans were beginning to disintegrate.

My C-Section was scheduled for Friday the 13. Our midwife couldn’t imagine why this would make me uncomfortable. I spent the night before the surgery in a state of utter fear. Until then, I had no experience whatsoever with surgery…I still have my tonsils! I was horrified by the knowledge that I would be awake during the procedure; aware of the scalpel that was cutting into my body. And, if I survived, I would be rewarded with a little human that I was responsible for…while I knew that rethinking motherhood the night before I was to enter it was probably not the wisest choice I could make, my terror knew no boundaries. It was limitless.

Yet I gathered enough strength to show up for our appointment. Because my fear was seeping out of my pores, our surgerical team did their best to put us at ease and accommodate us. Even though I cried like a baby throughout the surgery, our OB team did a fantastic job and before I knew it, our daughter had arrived.

I should have known something was wrong then. They neglected to hold her up after they pulled her from my womb. I saw my first glimpse of her when my husband brought her out after she had been cleaned and swaddled, en route to the nursery for her measurements. I remember thinking that her eyes looked strange.

I was then taken to Post Op where I remained for hours while the drugs wore off. I still hadn’t held my baby.

Finally I was taken to my room. On the way we passed the visitors lounge where my family had patiently been waiting. I saluted them victoriously as they cheered for me. We all knew that I had conquered my fear and that everything would be okay.

Or not.

My husband was in the hall outside of our room holding our unnamed baby. As they wheeled me in, he asked me if anyone had spoken with me about our baby yet. My body was inflamed with fear as I asked him what he was talking about. With a quivering voice he then told me that the medical staff suspected our daughter had Down syndrome. It is the most vivid memory I will ever have. On my deathbed I will remember every sound that was uttered, every breath than was taken during that endless moment.

I was devastated. I started sobbing and did not stop for days. I had been told that my baby was retarded before I even held her. When I finally did get to hold her, all I could see was the Down syndrome. All I could see was that she wasn’t perfect at all.

My perfect plans had been smashed into smithereens. There were too many pieces for me to even try to put them back together again

The doctor came to evaluate her and itemize the evidence of Down syndrome. To show me all of her imperfections. Every last one.

Through my teary eyes I saw the doctor whisk her to the nursery for a bath. Just then, some friends had arrived at the hospital to meet our daughter. My husband took them to a viewing window of the nursery to point her out, but all he saw was a baby in an incubator. He told them that wasn’t our child, but it was. A nurse rushed out and explained that our baby girl had started turning blue due to a PDA that was causing persistent pulmonary hypertension. She wasn’t getting enough oxygen, and couldn’t even regulate her own temperature. Much to our utter dismay, she remained in the nursery for the next 12 days.

During this time I cried and screamed as I alternated between grief, fear, guilt, and anger. The only image I had of Down syndrome was an outdated one of retardation and isolation. I can’t stress enough how uninterested I was in having a retarded child and being a forced to caretake for the rest of my life. My husband and I both come from academic families that highly value brainpower; from a world where intellectual prowess is the most important survival skill one can have. The thought that I produced a daughter who would be anything less than brilliant was horrifying to me.

I spent the first few days of her life unwilling to bond with her. I did not want to name her because I didn’t want her to be mine, but I didn’t want her to be anyone else’s either. The thought of going home without her to an empty nursery was unbearable.

This was the most pain I had ever experienced. I had spent my life blissfully untouched by tragedy, and had to rely on every coping mechanism in my being to digest that pain. It hurt to breathe. The hospital provided little comfort; they simply were not prepared for a Down syndrome birth. While they encouraged us to care for her, they were unable to give us any solid information or counseling. All they could give us were their best wishes, scant information downloaded from the internet, and some pamphlets published by the National Down Syndrome Society.

My husband, thankfully, was an emotional rock. He loved our daughter unconditionally from the moment he saw her and would willing spend his life giving her whatever she needed. He helped me see that I would too. He cradled me while I grieved, embraced my fear, and helped that hurt and fright evolve into love, acceptance, and hope.

As I watched her struggle in the nursery amongst a maze of wires, I began to see my determination in the outward thrust of her chin. I saw my lips, fingernails, and a pair of deep blue inquisitive eyes staring back at me with trust. I saw the possibilities of the future every time she gazed at me. I had created her life and I decided then and there that it would be a good life; a full and valuable life brimming with bliss. I would make it so. It’s my job. I am her mother.

She needed a name, a name that would foretell the strength that we would help to instill in her. We named her Emma Jayne, a sturdy name filled personality. Though we were unaware at the time, Emma means “whole and complete” and Jayne means “gift from god”. We were delighted to discover that her name was so befitting as she was, and will always be, a whole and complete gift from god. She was meant to be.

Today Emma is a happy and healthy 6 month old baby. She is active, alert, and eager to live. She smiles easily and laughs often. She becomes more beautiful with each passing day. I now see the beauty in the differences that I used to believe were flaws. Her upturned almond eyes are filled with wonder, the flat space across the bridge of her nose is a favorite kissing place, and her low set ears show off her ponytails perfectly. Her low muscle tone means that she works so hard to build her strength and endurance. Nothing is given to her, and nothing comes easily to her…she earns everything she has with hard work. Her determination is a source of inspiration and pride for me.

When she smiles, she smiles with her whole body.

I look back on her birthday which is a surreal nightmare for me. While the wound is still raw I no longer feel trapped; sentenced to a lifeless world of deadened dreams and excruciating disappointment. In my memory I see my former self awash in despair and I desperately want to reach out to that lost and frightened woman. I want to embrace her and comfort her with the vision of today. I want to close her pamphlets and whisper gently into her ear that she will fall quickly and completely in love with her little girl. I want to shut out the doctor’s medical babbling and tell her how her baby’s differences will seem so minute and will eventually emerge into a huge source of motherly pride. I want to slip baby Emma Jayne into her arms and explain that once she gets acquainted with all of Emma’s heartmelting ways, the idea of a lifetime together won’t be so scary after all. I want to help her stroke Emma’s face as I tell her that she will discover that a life with Emma Jayne is a wonderful way to live. That she will find in time, it is the only way to live.

But I can’t and that woman and her pain will exist forever in my memories. She is still part of me, but I am not part of her. Life with my sweet Emma has taught me so much and has fundamentally changed me. I am a better person today than I was yesterday, and the world is a better place with Emma Jayne in it. I have no idea what the future holds for her or my family, but I have no doubt that it will be filled with love and joy. I will strive to help Emma Jayne be the most she can be, and to be as independent as she is able, but in the end Emma will be who she is. She will show me who she is and what her capabilities are. If she is destined to spend her life down the hall from me, well then I honestly can say I cannot imagine a life more fulfilling than one with my Emma Jayne.

My plans are no longer perfect, because I’ve realized how futile the quest for perfection is. Humanity is a state of imperfection and to deny this fundamental truth is detrimental to our development. This truth is where compassion, empathy, and pride originate from. It is not the end of a life that defines its importance and worth, but the journey that lifetime travels. I can not even describe how eager I am to embark on this journey with Emma Jayne.

This is the journey of my life. It is not going to be perfect. It’s going to be better than perfect.

It is going to be amazing.

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11 ChatterBoxes:

jo_saturn@lycos.com said...

That was so beautiful and heartwrenchingly (word?) honest. I don't think I will ever forget reading this. Thank you

Rosemarie Ute Hoffman said...
This comment has been removed by a blog administrator.
Anonymous said...

Emily, it's hard to type with tears in my eyes; that was so beautiful. She is beautiful, and you have grown into a beautiful young woman. I know your mama must be so proud of you. I'm proud to say I knew you when you were a tiny little girl with big tossled dark curls, incredible blue eyes, and a smile that was unforgetable. I plan to keep checking back on you and your family.

Best love to you all.

Linda Edwards

Abby said...

Your story, and your little girl's as well, is the true meaning behind the song Wonder! and it fills my heart with such a sense of wonder myself, and amazement, and joy. It's such a miraculous thing - love. It changes everything. Keep loving, and just see what other wonders are to come.

Best of luck.

Abby

Tracey said...

In reading your story I saw my husband and I when we went through a similar situation with our son now three months old. I felt the same feelings of dispair, uncertainty and grief. My husband too was a pillar of strength. When my son was a few days old ,I walked up to the crib and thought he was not breathing. I realised how much I really loved him and from that day on I see him, my beautiful, bright eyed, smiling son and not the diagnosis of Down Syndrome. We are blessed and priviledged to raise such wonderful children.

jotcr2 said...

Thank you for your story. It is so similar to our experience.

Tokah said...

Your post is immensely honest and touching. Thank you.

Soteria said...

I have been enjoying a look over your blog the last couple of days since my friend Erin linked to it in one of her posts. I have really been enjoying it. I am still having a look through. I especially enjoy this post.

My brother has Down's Syndrome. We moved to a different country and I miss him so much I have been trying to find some way I can work with Down's Syndrome children. Unfortunately he is too afraid of planes to come visit us.

Thank you for your insightful and inspiring posts.

Laurie said...

It's like you are speaking through my experience as well. My son Chase was born with T21 just 5 weeks ago. He's been home for almost two weeks now, and I am finally able to start experiencing the joys of my baby boy, as you are with Emma Jayne. Thank you for your honesty and your outlook.

Jeanette said...

Thank you for your story. Mine is similar. My sweet Sydney was born 9 months ago with T21. We found out through the pre-screening. If there was a test in my pregnancy, I failed it. We did the amnio at 16 weeks, so had lots of time to prepare for Sydney's arrival. I was greatful for the time and we were elated at her birth. I did have the doubts etc even with the foreknowledge. Sydney also had pulmonary hypertension along with 3 holes in the heart. Luckily 2 weeks in ICU and O2 at home and all was well. We are lucky to have these angels in our lives. God Blessed us with more than I could have imagined.

Anonymous said...

I hope your family is doing well. Your honesty is beautiful. Your story is heartbreaking but it is a story of love and hope! I wish your family the best.

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