On April 1, 2011, my world came crashing down. If you’ve ever been hit with devastating news, you may know the feeling. First you feel like you’re in a dream. Then you feel like someone is holding you face down on the floor. You can’t seem to catch your breath no matter what. You feel like the world as you know it is crushed, over. I was so overwhelmed I wanted to run home (home Chicago, not home Rome) get on the floor and crawl under my bed and hide like a child. I wanted to escape. How could this be? How could THIS happen to me? There is no one word to describe how I felt or what I thought happened to my lifelong dream. I could try to use a group of words that express emotions I felt, but it won’t do those first days justice. Fear, guilt, failure, sadness, worry, loss, alone. I cried SO much those first days. I was scared for her health, scared I would fail her, scared for the challenges she would face every day of her life, scared she’d be hurt by others, scared of all the extras she would need. And to top it all off, having to face all these fears in a foreign country, SO far from my family and constant support. I remember turning to Mike and saying “We have to move home now.” And the tests. The awful tests my baby had to endure those first days. Possible serious heart issues. Hearing issues. Needles, needles, and more needles. The doctors were great at keeping us informed, but my head was spinning. Support groups, therapies, speech and feeding problems, possible heart surgery. How could I handle any of this?! I felt like I’d never get up from that suffocating place on the floor.
Today, my feelings are 100% changed. Just looking at those written words makes my heart ache. I want to go back in time and tell myself during those first moments what a lucky girl I am and how great everything will be. Those emotions I once felt have been turned to joy, compassion, laughter, surprise, courage, tremendous love. I quickly realized how lucky we are. My world wasn’t crushed it was broadened tenfold.
I thought I couldn’t handle this here in Rome. I learned through Annie’s birth that I have a family here too. Before Annie came along they were friends that I met because they work with my husband. The love that they showered us with will never be forgotten. They make Rome home and without them I know I would be packing up boxes to move back to the states. They are now a part of my family. And they know who they are.
Because of Annie’s extra chromosome, I have been in contact with so many wonderful mothers of children with Down Syndrome that, without Annie, I wouldn’t have the great privilege of getting to know. Their stories and their beautiful children’s stories touch my life every day.
I realize now that Annie’s diagnosis wasn’t devastating, challenging yes, but definitely NOT devastating. It took time to get the big picture: that God’s gifts are great and mysterious. Maybe not the picture I had in my head, not “my plan”. But God knows what he’s doing and I have learned to be grateful for the times he’s thrown me for a loop. All the obstacles in my life have taught me the most, made me work the hardest, and have had by far the most rewarding outcomes. They make me who I am today. I remember calling my mom about a week after Annie was born. It was 4 am here in Rome. I was in hysterics, sobbing. I kept asking her why everything always happened to me. Why I couldn’t catch a break? She calmed me down enough that I could go back to sleep. The next day I woke up and realized everything DOES happen to me….all great, unique, adventurous things happen to me, and how lucky am I for that. I met the most wonderful man in a most fairytale- like way. I have been given the opportunities to travel to so many wonderful places. I get to live in Rome, one of the most beautiful cities in the world. And I am blessed with the greatest happening of all….Annie.
She is a gift. Down syndrome does not define her. It is something she has. It’s a part of her like the soft upward swoop her hair makes. Like her one dimple, on the left side of her face. Like the soft light blue rings around the center of her deep blue eyes. Like her contagious laugh and smile that melts all hearts. It is a wonderful glorious part of her. And it makes her that much more beautiful.
Children with Down Syndrome need early interventions to help them develop and grow. All children with DS are different and need different interventions. Annie started physical therapy at three months. The biggest part of Annie’s therapy is “tummy time”. Time she spends on her stomach helps develop the tone in her muscles so that she will be able sit up, crawl, walk, etc. As part of her regimen she is supposed to spend “50% or more of her awake-time on her tummy”. So basically if she’s not eating, it’s time to work. I spend more time on the floor than I ever have. It’s important for her, but today for the first time I realized it’s therapy for me too.
I know I don’t have you all fooled. It’s not all roses and sunshine. There are bad days, sad days, obvious struggles and challenges that come with it. I know that I may not have had to face these extra struggles had Annie been born without Down Syndrome. I know all moms worry. But when you know your child will have to work harder to reach every milestone, you worry a lot more. Or that your child will be faced by prejudices and ignorance, and that they will undoubtedly have their feelings crushed because they are different. Or that the chances for your child to be sick more often or have a serious illness are greater. When I get overwhelmed I have to remind myself to take things a day at a time.
And then I take a deep breath and get on the floor with my beautiful girl.
You don’t see much from the floor lying on your belly. Just what’s “RIGHT and PERFECTLY” in front of you (and maybe some dust bunnies)
So today, almost six months after those first horrifying moments of feeling so terrified. Where am I? Still on the floor. And here’s my view….