OUR JOURNEY...the first month (written 18 years ago in 2004)
April 4, 2002, 6:06 PM the doctor said, "it's a girl" How exciting! I cried! We couldn't have been happier. We named her Alexandra Rose. Alexandra means "Helper of Mankind." Rose is a beautiful name and the name of Alex's Grandmother. I had a very easy, healthy pregnancy. No prenatal testing...just the usual ultrasounds. Delivery was easy for me, but very hard on Alex. She was a "face presentation" which means that her face came first instead of her head. So, her face took the impact of contractions and delivery, and was very bruised at birth. Her mouth and face were very swollen. She had difficulty nursing and did not do well with a bottle. I am not sure if anyone suspected Down syndrome, but she was sent to NICU anyway because of her face trauma.
The next day at about 11:00 am my world (briefly) shattered. I still cry when I think about it. It's hard to explain, but I feel bad for us back at that point....like we were different people that I could now comfort...who I want to comfort. The pediatrician walked into my room and stated, "We believe your daughter has Down syndrome." Time stood still. I can remember the tree that I was staring at out the window as my mind raced trying to comprehend what he had just said. I remember just saying, "no, no, no..." But somehow, I knew it was true. Chris, my husband was home with Sam our 2 year old son at the time. Chris must have had a feeling, because he called moments later to check on Alex and I and say he and Sam were on their way. He said,"what's wrong?" and I just blurted it out. It seemed like one second later, and Chris was in the room with me.
Things moved pretty quickly from that point. The head of NICU came to talk about the reasons they suspected Down syndrome. He talked to us about a crease on Alex's hand, low muscle tone, two sections of the pinky instead of the normal three, and a wide gap between the big toe and second toe. He pointed out tiny white specks in her eyes. I remember asking my doctor if there was any chance they were wrong and he said, "yes"... but I just knew it was true. He said "yes", I think, to help my mind as it desperately tried to understand and comprehend. We would know for sure when the blood tests came back. The doctor said that we needed to have a cardiologist run an EKG and echocardiogram to look at Alex's heart. The odds of having a child with Down syndrome are 1 in 800 and 50% of babies with Down syndrome are born with a heart defect. With our luck, Alex happened to be in that 50%. ... and we can't win a 1 in 10 shot at a lottery! We would later come to realize we had won the lottery!
Although we were both so upset, our focus began to shift to her health. She would need open heart surgery in a month or two. She needed to go on heart medication to strengthen her heart muscle and enable it to pump more efficiently. She also needed a diuretic to help her kidneys remove excess fluid from the body. Then she failed the hearing screening, had low oxygen levels, and had a loose hip...what next? Would she be blind? Would she talk? Would we have to learn sign language? Would she walk? Would she get teased? How would this affect her brother Sam? The unknowns were endless. I just wanted to go home and forget I was ever pregnant.
It is a very uneasy feeling to be driving home from the hospital after giving birth without your newborn in the car seat in back of you. Alex needed to be in NICU for almost a week. I needed to leave the hospital though, and clear my head. I knew she would be fine and I knew we would be back. Maybe I had to realize that this was all real...not a dream. When I woke up the next morning, I realized that there was a little baby in the NICU that needed me...and I needed her. She was mine...not exactly what I had ordered...but mine. So, despite a range of emotions, acceptance set in quickly. We headed back to the hospital ready to face the day.
Well, Alex had already started making friends in the hospital. As we walked in to the NICU, The nurses pointed over to Alex's crib and said, "Her grandpop has been here since 7am and has been talking to her for 3 hours non-stop." Alex's grandfather just could not get enough of her! He was the first visitor every morning during Alex's 6 day stay in the hospital. I asked him months later what they were talking about. He said that he told her all about her family, her brother, her cousins, her dog, her cats, her house, and all the things she would do and all the fun she would have with our family.
Chris took the news hard...maybe for a few hours. While I was thinking more about us and how this would impact our lives in a negative way (which never happened), Chris was more focused on Alex. Would she be in any pain? Would she be healthy? He didn't really worry so much about how we would cope with her having Down syndrome or how it would affect our lives; he somehow knew that part would be fine. He just wanted her to be healthy and not in any pain. I always hear Chris saying to Alex now, "I would take ten of you!"
I am grateful that we had the first 17 hours of Alex's life to enjoy without knowing about any health concerns. We were able to soak in the miracle of birth, study her, compare her to her brother Sam, talk about who she looks like...all of those normal things you do when you have a baby. She was the same little girl that we were loving on day one; nothing changed except becoming aware of a diagnosis. She was still our little girl.
Alex's grandparents, aunts, uncles, cousins and friends came to visit us in the hospital. There was definite sadness in the air, but also some positive energy. Two comments really stuck out in my mind. The first comment was from my brother, David who said something to the effect that we are not really the ones in the driver seat...a higher power has a plan. It was a lesson in letting go of the need to be in control, a lesson in accepting and embracing what I have, instead of dwelling on what I don't have. It was a lesson in faith. The other moment that impacted my thinking was a comment from my father. I was talking about miracles and said maybe God would show us a miracle and "fix" Alex. My dad replied, "What are you talking about? You already have your miracle."
For some reason, it was difficult telling others that Alex had Down syndrome. That is when I seemed to really cry. Maybe it just seemed so real actually saying it. We got mixed responses from friends, family, and co-workers. Most people were sad at first, but then offered congratulations. We received heartfelt, loving, encouraging letters and cards from family, and from some of our friends. Some people started reading and researching to learn more about Down syndrome. Most family and some friends came to the hospital to offer their support. Some people did not call or stop by, I'm sure they just did not know what to say. It would take a whole new page to thank everyone who offered support and encouragement. So, thanks again for all of the cards, letters, meals, flowers, books, gifts, and adorable baby clothes. Thanks to anyone who simply said, "congratulations" and were able to see the birth of a beautiful baby before anything else.
Many people were praying for Alex and I believe in the power of prayer. She was prayed for in church, prayer groups, and by our family and friends daily. Chris's brother, sister-in-law, and her family organized a visit from a man from a local church who has a glove worn by Saint Padre Pio. Padre Pio was a priest from Italy who bore the crucifixion wounds of Jesus Christ (the stigmata) on his hands and feet for 50 years. He died in 1968 and was canonized a saint in June, 2002. He wore gloves due to the bleeding on his hands. One of those gloves was brought to our home and a prayer meeting was held days before Alex's heart surgery.
The first few months were very busy for us. We had a lot of doctor appointments and a lot of late nights on the Internet researching and reading anything we could on Down syndrome. We talked to some seasoned parents of kids with DS who assured us that we were in for an exciting, magical journey. We felt great about the doctors we chose and felt relieved that we had a plan to help Alex. Bonding with Alex was easy and very natural, so our life seemed and still seems very normal...actually better than normal. As time passed, the moments of sadness became less and less. I can not even remember the last time I felt sad about Alex having Down Syndrome. I truly like her just the way she is. I would never want someone to feel sorry for us or pity us. Alex makes our family so happy and energized. We all have such a great time together...Mom, Dad, Alex, Sam, and baby Zachary. Alex is perfect to us. One of the first personal websites I found those first few weeks began with, "Welcome to the Wonderful World of Down Syndrome." I laughed at that then, but I now understand.
I am able to see now that those tiny white specks in her eyes are truly the most beautiful little stars.
*this site was created 18 years ago when Alex was 2 years old. There are some updates throughout the site, but the story is the same!
