After I had my daughter, Caroline, a number of people said to me, “you have to write about her” or “you should start a blog”, not just because I’m a new mom with a baby, but I also suspect because Caroline has Down Syndrome. I thought, okay, there are a ton of blogs already out there where parents write about their children whom have Down Syndrome, so how could my writing possibly stand out or be original? It would be kind of like if I started a blog about relationships and dating. Oh, wait.
In any case, writing has always been incredibly therapeutic for me, and it isn’t that I had intended to focus my past blog posts on relationships and dating, but rather, I wanted to tap into the raw emotions and feelings that just happened to transcend themselves through numerous heartbreaks and funny stories of dating and the paths that paved the way to Jeff. I wrote to write, and quite frankly, it was free therapy, and people who know me know I’m cheap so this was a win-win. So while I do plan to write about Caroline, I will write about her because she is Caroline, not just because she has Down Syndrome. That would only be part of her story and not the center of her journey; just like it is only part of who she is and not the center of who she is – or who she will become – as a person. But for now, we can start at the beginning.
After three years of two miscarriages, fertility hormones and shots and disappointing blood tests, we finally got that phone call last February from the doctors office that said, “Congratulations, your test was positive!” And with bated and excited breath, we waited. We waited until the next ultrasound, and the next ultrasound, and the next – until we heard the heartbeat, until we got past that 12 week mark where the rate of miscarriage dips significantly, until we saw her perfect little body on a screen swimming around inside of me. And because of my age, or what they so kindly label as “advanced maternal age” (yes, thank you, as if I didn’t already realize that it took me forever to find a partner, to get pregnant and that I’m not here because I put my career in front of children, but rather because I had to kiss a shit ton of frogs to get here – but yes, thank you very much for the reminder) – I had to do a series of genetic testing to rule out any possibility that our child would be born with what they call a “chromosomal abnormality”. Ironically – and quite unlike me – I went through with the blood test with very little anxiety, and quite frankly, paid little attention to what the results might reveal.
I was at work on a Friday morning in April when the phone call came. The genetic counselor left a voice mail, asking me to call her back as she had the results of our genetic testing. Deep down inside, I knew that if the results had come back normal, there wouldn’t have been a need for me to return her phone call. I called her back with trembling hands and a sick stomach and heard her say, “I have the results from back from your blood test.” Her voice, rather than being upbeat and positive, was somber as she delivered the next line, “Your test results show a 95% true positive that the baby will have Trisomy 21, or Down Syndrome”. My mind somehow could not grasp what she was saying, but oddly at the same time, very much did. My voice shaking and mind spinning, I went through the motions of taking down notes and asking a million questions: what do these results mean, and if this isn’t a diagnostic test, what does true positive mean, and did this happen just because I’m old or because we had fertility help? What’s the miscarriage rate and would I be able to carry the baby to term? What are the possibilities of false positives? How could this have happened? Or what I really wanted to know – what answer will you give me that I could point my finger at and blame? Only then as an afterthought, as the question had become lost among the panic and the tears, was the baby a girl or a boy?
The person delivering this kind of news will never do it right. You will be angry and frustrated with them as if it was their fault for giving you this fate. You will want to get in your car and drive to their office and scream and yell and shout at them like a crazy person – telling them to take it back, as if they hurled horrible insults at you rather than results of a test that’s outside of their – and your – control. And while they will never be on your Christmas card list, you will eventually find that the news they delivered – no matter the tone they chose to deliver it with – was probably the best thing that could have happened to you.
Afterwards, I remembered calling Jeff, perhaps the hardest phone call I ever had to make. With tears rolling down my face, I delivered the same results to him that I had just heard moments before, following with, “and the baby’s a little girl, Jeff. She’s our little girl.” And that’s when I started sobbing, picturing the little hope growing in my stomach; but now – what of her future?
You see – nowadays when you get these results back, they provide you with a window of time where parents can choose to either move forward with the pregnancy or terminate. And believe me, the doctors ask you – they put the thoughts of the unheard into your mind and add to the hurt and confusion and the unknown of what you already have been dealt. Those weeks feels more like 5 days. I can tell you that the things that you never thought would go through your mind, goes through your mind. Quality of life, future, health issues, heart complications, ability of making friends and getting a job, life expectancy, etc. all you worry and are anxious about when you have about as much experience with Down Syndrome as you have with nuclear physics. Although I was a Special Education major in college, my mind went blank on what this all would mean for our daughter.
That weekend was a dark one indeed for us. We didn’t sleep at all that night – just held each other and cried in the quiet of a hotel room somewhere in Albany, eating only Goldfish and chocolate chip cookies from the nearby vending machine for dinner. I truly believed we never would laugh again. And when I got in the shower the next morning and ran my hand over my swollen belly, I cried scared and shameful tears – shameful that I would ever think of not going forward with the pregnancy and scared because I knew that we would. I recall tapping on the shower door at Jeff, seeing his face through the steamy glass and waved, forcing a smile as I knew that both of our hearts were breaking. Now, if we could only go back to that couple in that hotel room, and the things that we would say to them! That what would lie ahead for us was in fact nothing to cry about, but rather, much to rejoice over. That our life would be more complete and more full of hope than we had ever thought possible. That what lay ahead for us was a profound happiness, and new friends and a new appreciation for humankind. God’s gift, indeed. While we were thinking at the time, “God, could you just give us a break?”, little did we know that Caroline was our break – our very beautiful and deserved chance of a lifetime.
Jeff and I never took the opportunity to take a diagnostic test, or what is called an amniocentesis. We were close; but then at the last minute, I decided against it. We knew that the results wouldn’t have made a difference and I didn’t want to put any unnecessary risks towards my pregnancy. So instead, we took time to find out all that we needed to know about Down Syndrome – met with doctors and specialists, made connections with the community of other parents and families, finding small hopes within others’ stories and realities. Those small hopes grew to increased excitement and we soon found that we were back where we started initially – excited and nervous (just like any new parent would be) about welcoming our first child into the world. I recall that a couple of months later, we were on our way to Boston Children’s hospital to meet with a doctor at the Down Syndrome Clinic there. We were both on edge and anxious as we were still getting used to the news and it hadn’t quite hit us yet that this would become our reality. Especially as ultrasounds had not picked up any soft markers or indications that would point to her having Down Syndrome, outside of the genetic test results. Shamefully, I admit that I still held out a bit of hope that perhaps the test was wrong, that she would be born a “typical” child and my worries were to be for naught. *(I use the word “typical” here as that is the vocabulary that I found is used when discussing a child with Down Syndrome vs. a “typical” child. Frankly, I struggle with the term and really don’t like it as it is ableist language, for how do we define what is “typical” against what we believe is not? Is there such a thing? Everyone is unique in their own special way and Down Syndrome is just another piece to being unique. So I use the term here loosely, as I firmly believe my daughter is also typical, given the fact that she goes through a landfill quantity of diapers per day, cries when she is hungry, snuggles against you when she is asleep and pees all over you right after you give her a bath. You know, a typical baby.)
However, when we stepped into the hospital elevator that morning we joined a beautiful red-haired young woman and her two equally beautiful daughters. One of the daughters had those tell-tale almond-eyes of someone with Down Syndrome and her mother’s red hair and coloring. She was probably no more than four or five years old and she proudly sat in her stroller looking at stickers that she must have just received from a previous doctors’ appointment. Without hesitation, her eyes locked with mine and she reached out and grabbed my hand tight-tight and didn’t let go. She smiled broadly, and she seemed to say to me, “it’s okay! Your daughter is going to be great. She’ll love you so much, as you will her.” She didn’t let go of my hand until we exited the elevator. It’s funny how such a small person could bring me such great comfort that day. And that’s when I knew deep down, despite the ultrasounds and our doubts, what our reality would become. And I was hopeful.
When Caroline was born and they put her wiggly, newly slick body on my stomach, I clearly remember her looking right at me. The look on her face said, “What the hell just happened?” and then a softening and the look of realization only babies can display that said, “Oh, you’re my mom.” And when I saw her face and her beautiful features, I knew. The 95% became a 100% and I suddenly became very scared and overwhelmed – but love and the natural bond between mother and daughter wedged themselves in between those feelings and took up shop within my heart. I folded her into my arms and looked into her swollen and almond-shaped eyes and I knew that if God had come down at that moment and said, “just kidding, Leah, that was a test. I’ll give you a ‘typical’ child”, I would say “no way, God. I will take Caroline just as she is – as scared and overwhelmed as I am, she’s just the way she should be.” And that’s when, as the cliche saying goes, my life changed. Caroline Ann Gallant came into the world and was the culmination of three years of hard work, heartache, frustration and tears’- the answer to our prayers.
As the days move quickly past and she rapidly nears two months old, I have no idea what life will bring to Caroline. I do know that she poops explosively, cries at the top of her lungs when she is hungry like she is being stabbed and just when I get ready to put her down and try to eat my lunch at 3PM in the afternoon, she cries or fusses as if on cue and I find myself side-slurping soup or eating a sandwich with one hand while shoving a pacifier in her mouth and rocking her with another. She sleeps like an angel and cries like a banshee. (Not sure what a banshee sounds like, but it’s probably horrible and close to a baby cry). Putting her clothes on is pretty much torture and is like dressing an octopus on speed. So, just like any other baby. I do know that Caroline is first and foremost the combination of Jeff and I. That will mean that she will be determined as hell to do the best and be the best that she can be, that she will probably be some sort of a smart ass and like to watch football and bake cookies. She will easily make friends and be the life of the party because of her laugh and bad jokes. She will be pretty awesome – and will ask everything there is to ask of life and work damn hard to live it to the fullest. Right now, that’s all we can hope for. And the rest of the possibilities will just unravel – the way that life is meant to, with no peeking at the end of the book and looking into a crystal ball; but rather revealing it as it is meant to be – slow and steady, full of beautiful, and sometimes hard, surprises that makes us who we are. But those surprises are always worth it. And oh, is she ever.
To care for and raise Caroline will be a privilege. I look at her now and say, “wow, how very lucky we are.” When that couple in the hotel room had no clue what to expect, this couple now still doesn’t. The difference is that the heavy heart and sadness has left and been replaced with joy and happy tears now and then. The anxiety and worry is still there, but just like any parent, we move on with excited anticipation and work to enjoy every small moment that life gives us. That has nothing to do with a diagnosis, but everything to do with what it means to raise a child. We’re still learning, and for now, Caroline will be our teacher.
So, I will continue to write. My confessions as a Homecoming Queen has been replaced by the her-story of Caroline and our life moving forward as a family. It is not that my story has ended necessarily, but it has been merged into a larger and more purposeful one. After all, my “confessions” brought me to Jeff and that eventually brought me to Caroline. And that has made all the difference. So, keep reading, my friends. For I would imagine the story only becomes richer from here.
“When it began, I can’t begin to knowing… who would have believed you would have come along…Sweet Caroline, good times never seemed so good.”
This post is dedicated especially to the very special people at the Massachusetts Down Syndrome Congress, the parents and volunteers of the First Call program, to the nurses, doctors and staff at the Brigham and Women’s Neonatal Intensive Care Unit (particularly, Julie, Karen and Kirby who took such loving care of Caroline during her stay as if she was one of their own), the friends and parents of children with Down Syndrome in the Boston and surrounding communities whom have reached out with support and love and advice throughout our journey (what wonderful friendships have transpired! And I still have so much to learn!), to my OBGYN Dr. Smith whom at every ultrasound told me that Caroline was just “perfect” and I would assume if she delivered her that night would say the same. To all my friends, co-workers and family whom have overwhelmed us completely with love, texts, phone calls, cards and gifts in the past two months – it has meant so much more than you know. Thanks to you all, Caroline dresses better than her parents. And that’s perfectly fine with us.