My husband Ray and I were excited to learn I was pregnant in May of ‘05. My pregnancy was simple, straight forward, ordinary. I was nauseous during the first semester. Energetic during the second. Ready in the third. We had forgone all prenatal testing during the pregnancy, save for an ultrasound at 24 weeks where we saw a fuzzy image of our sweet baby staring back at us with full cheeks, a pointed chin, and big round eyes.
After a wonderful labor and birth, our son, Charlie, was born on January 8, 2006 at 4:45pm. He was 7 pounds, 4 ounces, and 21 1/2 inches long. A precious newborn with brown fuzzy hair, full cheeks, and a button nose. Amazed and blessed to be little Charlie’s parents, we found ourselves deeply in love.
On his second day of life outside the womb, before we left the care of the staff at Mad River Birth Center, we had Charlie’s tiny ears screened for hearing loss. The nurse waited until Charlie was sleeping soundly, then slipped two little ear phones over his ears and administered the test as he dozed. He did not pass the test after two different tries, so we arranged an appointment with an audiologist for further testing. Most of the time when a newborn fails the hearing screening it is because of fluid or vernix in the ears that hasn’t yet cleared up. In Charlie’s case his hearing loss was permanent. A moderate sensorineural hearing loss in both ears. He would require hearing aids in order to hear well enough to understand language and learn to speak. We found this out when Charlie was 6 weeks old. The news was crushing. Our hearts broke to think Charlie had not heard all the songs we sang to him in utero. That he could not hear me coo and speak softly to him as we nursed. This was the begining of our journey to our “new normal.”
At Charlie’s 2 month check up, after updating the doctor about the hearing loss, the doctor began to ask me a lot of questions. Does he poop every day, can he hold his head up on his own, is he a sleepy baby. I’m a first time mom, and I figured the questions were routine until he asked if Charlie had smiled yet. No, he hadn’t smiled yet... Next the doctor said “I think Charlie may have Down Syndrome.”
Down Syndrome. The doctors words hit hard. I came in a beaming new mother, now all I could do was hold Charlie close as the doctor shared with me the signs of the genetic disorder. We would need to do a blood test called a karyotype in order varify the presence of a third copy of the 21st chromosome. I listened calmly, but with a growing pressure in my chest as I fought back tears. I agreed to the test, tucked the order for the karyotype into the diaper bag, dressed Charlie, stopped at the front desk to schedule his next check up, then drove straigth to the hospital lab.
We waited three endless weeks for the results of the test that would tell us if our son had Down Syndrome or not. They were some of the toughest days we’ve spent with one another. We looked at our sweet boy and felt like he was slipping away from us. All our dreams and expectations for our son were threatened. We were so afraid of what our future may be like with a developmentally disabled child. We worried about what the future may be like for Charlie. Would he have friends? Would he be included at school? Would he be accepted by his community? We cried, we prayed, we held each other. And, you know what Charlie did? Charlie smiled. He smiled because he knew everything was going to be alright.
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Charlie does have Down Syndrome. And, to our surprise life with our little boy is nothing of what we pictured in those early days. Now 17 months old, Charlie is bright, energetic, and determined. He can crawl and pull to stand, he gets into everything, he communicates through words and sign language. He loves to play with other children. He is accepted by his community. He is sought out by others.
Charlie benefits from Early Intervention services. He sees a Physical Therapist, a Speech Therapist, and has an infant teacher come to our home once a week. He is a bit behind his typically developing peers, but with all the wonderful support we recieve he is reaching every milestone in his own time. We are excited about all of Charlie’s accomplishments and growth. We are excited about his future.
This morning as I watch my beautiful son creep about the house I am overcome with pride and love. In a little over a year I went from feeling like “why me?” to feeling like I’ve won the lottery. I’ve never won anything in my life, but when only 1 out of every 800 babies is diagnosed with Down Syndrome I can’t help but feel like I am that lucky One. Learning your baby has a disability is scary. But as the dust settles fear gives way to acceptance, acceptance to love, and love gives way to a “new normal.” A normal where you begin to see past the challenges, the differences, and handicaps and truely enjoy your child for who he is and the richness and depth that is his unexpected gift to you.