Monthly Archives: September 2011

Sep23

the view from the floor

Posted on by
Standard
            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….

This slideshow requires JavaScript.

Sep20

Letter to Giorgia

Posted on by
Standard

This slideshow requires JavaScript.

This is a letter I wrote to my doctor just ten days after Annie was born. Giorgia is my OB/GYN. I have not always been on a first name basis with her. I met Dott.ssa S. just three days after leaving the only home I ever knew to move  to Rome. I was six weeks pregnant. She doesn’t speak English, and I don’t speak Italian. What an adventure this was going to be. For the next 14 weeks we had regular visits, but hardly talked to one another. We communicated through our translator, my husband, we rarely spoke directly to one another. This was scary, frustrating, so confusing, and not what one typically expects to experience for her first pregnancy. She was great, don’t get me wrong, she took very good care of me and my unborn baby. But we just didn’t have a connection yet, how could we? We couldn’t even communicate! Then at 22 weeks, things began to change.

At our 22-week ultrasound, Dott.ssa S. brought in a medical translator, the first time in over 10 appointments that she did this. I was immediately alarmed. The doctors informed us that they found an abnormality in my umbilical cord. I was told that I had a 2 vessel cord and given the option for a late amniocentesis. The doctors told us their was a 25% chance for DS, a possibility that the baby could have a serious heart defect or other defects, or that the baby would not survive the pregnancy. SCARY!  I looked up to my doctor with tears in my eyes as she rather coldly told me, “You have five days to go through with the amnio.” “Why five days,” I asked. She then informed me that after five days, it would no longer be legal to terminate this pregnancy. My husband and I were in shock. We immediately said we wouldn’t terminate, no matter what.

And that’s when it happened: The first spark of a beautiful friendship.

She told us that, legally, she couldn’t tell us what she thought we “should do”. She was glad to hear that we decided against the amnio. She ordered some tests to check the baby’s heart. She spent over two hours with us that day. And after 16 weeks of meeting with her, I saw for the first time what a caring and compassionate doctor I had. She made our next step so easy….we let go and let God. I am so glad I didn’t get the amnio. I would’ve been freaking out through the whole pregnancy, researching everything, and worrying about all the things Annie could have. Undoubtedly, this would have been harder on her during the pregnancy. Dott.ssa S. quickly became Giorgia, available 24/7. She kept me calm and strong.

I started having contractions at 6 1/2 months and had to go on medication to stop them, with periods of bed rest. Annie was born almost a month early via C-section because I had too little amniotic fluid left. We received a clinical diagnosis (testing still had to be done for confirmation) at the hospital the morning after, though I knew the moment they laid her limp body on mine (a topic for another day). Giorgia was there along with a pediatrician and geneticist. She stayed in the room with us for so long I can’t remember. She cried with us and held our hands. She said ALL the right things, which I needed, because following our sharing the news with others, so many said the wrong things. After ten days of non-stop tears, I sat down and wrote this….

10, April 2011
Dear Giorgia,
There are no words for what you mean to our family.  There is no possible way to thank you for what you have done for us and for all the love and support you have given us through our entire pregnancy and the past week.

Eight months ago, I left everything and everyone I knew and loved to move to Rome for Michael’s new job.  I found out I was pregnant with Anne the day my husband left, I was to follow two weeks later.  I had never been more tremendously scared and excited at the same time in my entire life.  My entire life I have wanted nothing more than to be a mother. And I was going to be a mother for the first time away from my family and friends in a foreign country.  I was terrified of finding a doctor I would be comfortable with because I do not speak Italian.

And then we met you. In the States, women search and search for the perfect doctor to deliver their babies. I have friends who met with up to ten doctors before they found the right fit for them.  Michael and I didn’t really know what we were doing, and were not familiar with Italian health care.  And so we were told to go to Villa Stuart. I didn’t need to search to find the right doctor for me, because God sent me to you. And with each visit, I grew more and more comfortable with my doctor I could not understand.  When we got the news of the abnormality in my umbilical cord and the grace in which you delivered it, I knew I could never ask for a better doctor.  I have been in and out of doctor’s offices my entire life, with chronic asthma and eight previous surgeries.  And I have never felt better taken care of than with you.  You were always there, every step of the way and I truly believe that you saved my baby from a harder life.

Though my delivery and holding my baby for the first time wasn’t what I expected becoming a mother would feel like.  Though my first three nights of motherhood were filled with grief and guilt and nervousness for my little angel. Though my first moments as a momma were not of joy.  It was the most amazing and significant moment of my life.

Days later I am the happiest mother and can’t wait for the rest of my exciting journey with Annie.  My life is filled with more joy than I have ever known.  And, Giorgia, YOU were a huge part in getting me where I am today.  You took such good care of Annie and me the past eight months.  But more importantly, you got me through all of the tough news.  You held my hand and cried with us.  You were our greatest comfort.  We had no family here to do that for us, and you stepped in.

We are forever in your debt, and forever grateful. My only hope is that you will be there for the births of all my future children.  I could never find a greater doctor than you.

Thank you from the bottom of all of our hearts. We love you.

Colleen, Michael and Anne Kathleen

 

Sep19

Great Grandpa B

Posted on by
Standard

Today, for my first post, I was going to write a brief summary of our story and how I came to be writing this blog in the first place. Instead, I am writing to celebrate a life we lost yesterday: Annie’s Great Grandpa, who died yesterday at 85.

Great Grandpa (my husband’s grandfather) was the kindest and most generous man I have ever met. Three years ago I was lucky enough to have met Michael, the man of my dreams, who I am certain is the man he is today in great part of his grandfather. He’s my husband’s grandfather, but has been a huge part of my life since I met Michael. Great Grandpa has filled our lives with love in so many ways. He has not only touched his family members’ lives, but so many others, even strangers through his enormously generous heart. His donations to numerous organizations have reached and touched the lives of so many, with donations to an organization for Down Syndrome research being one of  the latest on his list. We’ve been so far from him the past year after moving to Rome. And we were really used to seeing him all the time. When we lived near him, Michael and I had dinner with him nearly every week. When Annie and I were home for the summer, we visited often, but he was so smitten with her he called everyday, sometimes twice a day to see when his next visit from her would be. His apartment was literally wallpapered with photos of his three great-grandchildren.

We named Annie after his amazing wife Anne Kathleen, who passed last Christmas after a 17-year bout with Alzheimer’s. If you’ve ever read or seen The Notebook, the story is so similar to the love between my husband’s grandfather and grandmother. He moved into her nursing home when her illness progressed to the need to live apart from him. He visited her everyday, knowing very well the love of his life wouldn’t recognize him.

Great Grandpa was blind and had just recently needed to go from having caretakers during the day toaround the clock. He hated this and his lost sense of independence. His death was very sudden and quite surprising. He had a moderate stroke five days ago and we were told that in six weeks he would be on the road to a good recovery. We booked a flight for Michael to go back to the States to see him…it’s very hard being so far away. He was supposed to leave today. Yesterday Great Grandpa’s lungs began to fill with fluid and the doctors made it as comfortable for him as possible. He died early in the morning. Michael never left. We are so sad we didn’t get to see him one last time.

We are trying to celebrate knowing that after 16+ years Great Grandpa is together again with Great Grandma, but my family is hurting and we miss him more than words can say.  He ended a recording of a storybook for Annie by saying “Annie, I love you and I always will!” We are so glad she will forever have this message with his voice behind it.

Grandpa, we love you and we ALWAYS will.