Today’s guest author is Annie’s godmother, my sister Amalia. I can’t start writing about her for today because this post would then be three times as long as it already is. Molly, there is no way I could ever put in words anyway all you mean to me and all you have done for us. Thank you for being my best friend. Thank you for all your love, even the tough love I often need the most and that no one but you can give. Thank you for being there every step of the way during our pregnancy and crazy past two years so far from you. But mostly, thank you for loving Annie the way you do. We miss you everyday!
It started over two years ago, when Colleen shared the exciting news that she was pregnant. It somehow made that very difficult week, when my best friend would be moving 5,000 miles away from me, a lot easier. The joy I felt moments after Colleen called Kay & me upstairs to join her in the bathroom, to show us those two precious pink lines, really carried me through having to say goodbye. It’s funny how I used to resent having to share a room with my messy older sister. Looking back I know how lucky I am, to have shared everything with her. Before she married Mike, we even chose freely to be roommates. Even though she was still messy, those were two of the best years of my life. When Mike and Colleen lived in Rogers Park, they had Patrick and I over for dinner once a week. I sort of took for granted that I would get to see them whenever I wanted, which is why my heart sank when they told me they were really moving to Rome. I wasn’t sure how I was going to handle her being so far away. Which is why the distracting news of the pregnancy was so bittersweet. I was going to be an aunt!!! But from a very great distance.
I think expecting the baby made it easier on my entire family. We were able to focus our thoughts on this very happy news. It took away from the sadness of missing Colleen and Mike. We were also excited for them, creating a life for themselves in Europe. The fact that their family was growing made that year all the more special.
They left in August. In December, somehow my parents, four siblings, and fiancé came up with enough funds and vacation time to visit the Beazleys in Rome for Christmas. God bless Mike, as he welcomed 8 of his in-laws into his three-bedroom apartment for ten days. When we arrived, I was overjoyed to see Mike, Colleen, and the baby bump! I had a rough flight over, so my family went out to see the city, Colleen and Mike went for their 20-week ultrasound, and I took a nap. I woke up from my nap in a jet-lagged fog, hearing my sister crying as she sat down on the bed next to me. The ultrasound revealed that the baby had a two-vessel umbilical cord, meaning there’s a 1 in 4 chance that the baby has Down syndrome. I wasn’t worried for a second, but it hurt me to see my sister so scared and devastated, instead of being able to enjoy the pictures they came home with. Looking back, I regret so much what I said to her in an effort to provide comfort. “Colleen, I’m sure everything’s okay, I’m sure she doesn’t have Down syndrome….” I told her to just think positively, and try not to worry until there’s something to worry about. I never entertained the idea that the baby may have Down syndrome, and if that’s the case, then everything will still be okay. Of course I knew that statement to be true… as a pediatric nurse I’ve had the privilege of caring for (and loving) sick children with Down syndrome. But I never let my mind go there. I couldn’t bear the thought of Colleen having anything but a perfectly healthy baby. So I refused to believe that maybe this baby, who I already loved so much, could have a genetic condition, and many medical problems and life challenges that would go with it.
Colleen and Mike were faced with a very difficult choice: have an amniocentesis to facilitate further diagnosis, or forgo the invasive genetic testing, knowing they would not find out anything until the baby was born. As a healthcare provider, I respect genetic testing, and the decision that parents make during their pregnancies to investigate and rule out chromosomal abnormalities. I understand that parents want to be prepared, and sometimes the more information we have, and the sooner we have it, the better we can take care of the patient. But I am extremely proud of my sister and brother-in-law for the decision they made, refusing to allow even the slightest risk of complications for a procedure that would tell them one of two things: 46 chromosomes, or 47. Because 46 or 47, we will love this baby just the same. The only thing they didn’t know, that none of us knew, was that the 47th chromosome would be the greatest gift that any of us would ever get in life. The kind of gift that is so good you could never want for it, because you never knew there was something that good for you to have.
The rest of our Christmas trip in Rome was amazing, and Colleen bravely kept a smile on her face to ensure that it was. We all got to feel Annie kicking through her belly, making us realize how soon we would be aunts/uncles/grandparents. Saying goodbye again was hard, knowing Colleen would be bringing this baby into the world a few months later, without us by her side.
I got the phone call extremely early in the morning on April 1st, Mike informing me that the baby was coming a month earlier than expected (no fooling), and Colleen was having a c-section within the next hour or two. On April 1, 2011, I experienced the most extreme emotions imaginable, the highest of highs and the lowest of lows. At some point in the afternoon, Mike called me again, announcing the arrival of my first niece, Anne Kathleen Beazley. I was bursting with happiness, but dying inside that I wasn’t there to see her. Colleen eventually called me later that evening, sounding worried. The doctors never said anything, but she was worried Annie had Down syndrome. Again, I regrettably tried to comfort her by telling her that I’m sure she doesn’t, if the doctors have not told her, and she doesn’t have certain obvious features, then everything is okay, Annie is just a healthy baby…no genetic condition to worry about.
I went to bed happy, so excited to be an aunt. At about 4am, I awoke to another phone call….my hysterical sister on the other end of the line. I will never forget that horrible feeling…..the ache in my heart, the gut-wrenching feeling of helplessness and fear. The kind of feeling you get when someone you love is completely devastated, and there’s nothing you can do to make it better. I tried to ignore these sharp pains and searched for words for my sister, and all I could find, all that I had, were my own hysterical cries to echo my sister’s. I like to think that maybe I could have been stronger, had I been there in Rome, at the hospital, with the ability to just put my arms around her and give her a hug. The ability to hold Annie in my arms, to help convince my sister, a terrified new mother, that everything was going to be just fine. But I wasn’t there. I couldn’t give Colleen a hug; I couldn’t hold Annie in my arms. Those were the hardest five minutes of my life. All I could do was cry when my sister needed me the most. I have no memory of what I said to Colleen that morning, but I hope that during that hour-long talk I provided her with the support that she needed.
After we hung up, I tried to go back to sleep, but the long list of potential medical problems that Annie may have was racing through my mind. What if she needs heart surgery? What if she has a seizure disorder? What if she has Leukemia? What if, what if, what if…..
And then it was “how?” How are Colleen and Mike going to care for this baby with special needs, so far from home? How are the Italian doctors going to give her the care that she deserves? How is Colleen going to cope with this, with no family other than Mike to help her? How is Colleen going to understand Annie’s treatment plan, when all she can say in Italian is “That baby can swim!!” ??
Then it was “why”? Why did Colleen have to face this scary diagnosis, so far from home, and so far from the support of most of her family? I never shared this with Colleen, but during these first few days I thought, “Why not me, instead of her?” I was naïve, and felt that I would be better prepared to care for a special needs child than Colleen would. I know these words make me seem like a terrible person, but I truly felt this way; not because I didn’t think Colleen would figure it out, or be able to handle it, but because I didn’t want her to have to. I wanted everything to be easy for Colleen, Mike, & Annie. During that first day or two, maybe because they were still in the hospital, awaiting results from the echocardiogram, renal ultrasound, and many other tests, I was viewing this diagnosis as a burden. I hate that version of myself, too bogged down with worry about Colleen’s emotional well-being and Annie’s physical health, to see that this diagnosis was not a burden, but a blessing.
I was surprised by who the person was to snap me out of this clouded state of mind. It was my mother-in-law, Peggy McSherry. I’ve lived my whole life knowing how incredibly lucky I am to have the most loving, dedicated mother on earth: Maureen Weiler. My first year of marriage has made me realize I am also one of the few lucky young women out there to have an amazing mother-in-law, one that only makes your life better; one that makes you feel loved just like your own mother does. On April 2nd I was crying a lot, really worried and scared. And when I shared the news with Peggy that Annie was born, she was smiling so big, and asking to see her picture. Then I said, “Peggy, she has Down syndrome.” For some reason I felt the need to say that, maybe because I was looking for comfort in my state of fear. Peggy didn’t flinch, she just immediately gave me this confused look with furrowed eyebrows as she said in her sweet high-pitched voice, “Well, that’s okay!” Like, ‘who cares? why would you even worry about that?’ And as my mind went to all the babies in the hospital with Down syndrome that I cared for after surgeries, and all the challenges they faced, I thought…well, doesn’t she know that this could be really hard?? But then I realized, it didn’t matter…all that mattered was loving Annie. So I forced myself to stop worrying about Annie, and just let myself love her. It was the best feeling ever, like the weight of the world being lifted off my shoulders. From that moment on, thanks to Peggy, I celebrated her life instead of fearing for it. I think that’s what this month is all about: celebrating life. I think it’s what my sister is working so hard to promote with this blog, and especially Down Syndrome Awareness Month. It’s about love and acceptance. During those first days of Annie’s life, I was guilty of what Colleen is trying to put an end to. I put Annie in this category of being a child with Down syndrome. As a healthcare provider, I’m trained to do this, to know which patients are at risk for certain conditions, so that we can detect problems early, and optimize health. But as Colleen has said so many times, babies with Down syndrome are at increased risk for having hundreds of conditions, all of which any healthy “typical” child could also have. Don’t let a diagnosis, whether it’s Down syndrome, muscular dystrophy, cystic fibrosis, or any other condition, define a child’s life. Just love them, as an individual, unique person.
I was wrong about so many things those first few days. I was wrong about how sick Annie would be. She really was, like I said to Colleen on April 1st, “just a healthy baby.” I was wrong about Annie not getting the care that she needed in Rome. It turns out, Annie has sees a physician that specializes in Down syndrome, something the vast majority of children in the states do not have access to. He’s amazing, he will not let Colleen & Mike say “Down syndrome” during the visits…he says, ‘”we don’t talk about babies with Down syndrome, we just talk about Annie.” She has a therapist that comes straight to her living room floor to play with her three times a week. Annie is thriving in Rome.
Most of all, I was wrong for thinking “Why not me, instead of her?” Colleen is the most incredible mother to Annie. As lucky as she is to have Annie in her life, Annie is so blessed to have Colleen, the best mom she could ever ask for. Despite my medical background, my love for children (especially Annie!), the endless hours of research and the 30 page paper I wrote about Down syndrome, I know in my heart I could never be as good at raising Annie as Colleen is. It didn’t take long for me to realize how amazing Colleen is with her. During the first 6 weeks of Annie’s life, before I was able to meet her, I Skyped with Colleen as often as possible. Each time, I saw her struggling to feed her baby. It was beyond frustrating, as Annie was so hungry but unable to latch on. Colleen knew that breastfeeding would be instrumental in Annie’s speech development. Colleen did not have a lactation consultant in Rome to walk her through this. She took advice from a friend, a lactation specialist, back in the states, via Skype and phone calls. Colleen, Mike, and her doctors worried about her failure to gain weight as expected. Still, she never gave up. Six weeks later, Annie figured it out, and Colleen was finally able to feed her baby without a constant fight. Colleen believed in Annie then, like she always does, like she always will.
Shortly after this breakthrough, I was able to fly to Rome to finally meet my niece. After arriving, Colleen placed this tiny baby in my arms. Annie opened her bright blue eyes and just looked up at me. Talk about love at first sight! I don’t think there are words to describe this new kind of love that I instantly felt. Of course I knew I would love my niece, but I was not prepared for this, I had no idea I could love anyone this much. My next feeling was fear; and that’s the first thing I said out loud, “Oh no! What if I don’t love my own children as much as I love her?!” And Colleen just rolled her eyes and laughed at me. “You will,” she said. But really…that fear has not gone away.