It was the annual Cardiologist appointment today that had my mind quickly flying back to the 18 years ago when my precious newborn was needing his weekly heart check ups. Seeing him today sitting on the table with the doctor listening intensly to the heart beat and quizzing me with the typical million questions I get asked each year for him quickly reminded me just how far we have come and what a blessing that is. My husband and I were just babies ourselves when our sweet Chase came into this world. I was terrified, excited and 100% in-love with this brand new baby boy I was holding in my arms. We just could not get enough of him! We were so blessed to have all of our families with us and Chase just got bounced from one person to the next his first night with all of us OOOhing and Ahhhing constantly. Little did my husband, Joseph, and I know how much our world was about to change in the good and bad. Both, my parents and my In-Laws, returned home that first night with thoughts that something wasn't right about Chase. My mom told my dad that he just didn't look like a "normal" baby, while my dad argued back that he was perfect. The following day was a whirl wind to say the least. My mom brought in breakfast and while we were sitting on the bed eating our Pediatrician entered asking how I was feeling and what we thought about our new baby and if we had seen him. Duh, of course I saw him, I gave birth to him the night before! Then he proceeded in the most uncaring way to bluntly say "your baby has Down Syndrome and a heart defect." I remember myself saying back to him. "No, you have the wrong baby, there is nothing wrong with my baby!" As I was saying that to him, my heart was about to jump out of my chest and the tears instantly began. His next words were "I am going to go now and let this sink in with you. The cardiologist will be in soon to speak with you." And just like that, he was gone. Now, the panic began. Not only did we have a baby with developmental delays, he had a hole in his heart that was going to need surgery in the up coming year. The following months were filled with massive amounts of cardiology appointments, lots of medications and even a neurosurgeon to get him ready for an unknown date of heart surgery. Oh, and we found a new and amazing pediatrican too. At 4 months of age, the cardiologist informed us that he felt Chase was ready to head to MUSC Charleston for the surgery. We arrived in Charleston 2 days before surgery day for the insane amount of testing Chase had to go through, and for Joseph and I to go through our tour of the NICU to learn what to expect - which by the way, never really prepares you for YOUR child.
What was supposed to be 5-ish days in Charleston, turned into 2 weeks. The surgery went great, but Chase has serious set backs with some infections that had us on the point of nervous breakdowns. He did it though. He pulled through like a trooper and with that taken care of, he was on his way!
Chase was a whole new fella after the surgery. So much stronger and alert and from there, we could focus on helping him become the best he could be. We spent the next 13 years going to Occupational therapy, Physical therapy and Speech therapy once a week for each for many of those years. We made such wonderful forever friends in doing so and Chase just blossomed more and more. We tried going to a support group meetings, but the first one we went to the group was talking about surgery to make children with Downs look more normal. WHAT? And some were discussing adding more Beta Carotene to their diets to help improve brain functions and their kids were actually orange from what seemed an overdose of it. No thank you. So with that, we decided we did not need a support group. We were just going to support each other and face life with Chase with positive thoughts and deal when we have to deal. We have certainly faced some challenges over the years, and I know that more are still to come through out his life. I welcome them. We walked out of the Cardiology appointment today with another smile and sigh of relief that another year has passed and his heart is still healthy. October is Down Syndrome Awareness month.Chase, like other people with Down Syndrome, is so much more "normal" than most people think. He also wants to be treated normal too! Sure, he has his set backs and sometimes acts a little goofy when he shouldn't, but don't we all? He embarrasses his 3 younger sister from time to time, but what older brother doesn't? Recently I learned from our Pediatrican(who also has brother with Downs)that on top of it being rare that an 18 year old, like I was, give birth to a child with Downs, but it is also rare that the child with Downs be the first born. I like to think that makes Chase just a little more extra special.
Chase was a whole new fella after the surgery. So much stronger and alert and from there, we could focus on helping him become the best he could be. We spent the next 13 years going to Occupational therapy, Physical therapy and Speech therapy once a week for each for many of those years. We made such wonderful forever friends in doing so and Chase just blossomed more and more. We tried going to a support group meetings, but the first one we went to the group was talking about surgery to make children with Downs look more normal. WHAT? And some were discussing adding more Beta Carotene to their diets to help improve brain functions and their kids were actually orange from what seemed an overdose of it. No thank you. So with that, we decided we did not need a support group. We were just going to support each other and face life with Chase with positive thoughts and deal when we have to deal. We have certainly faced some challenges over the years, and I know that more are still to come through out his life. I welcome them. We walked out of the Cardiology appointment today with another smile and sigh of relief that another year has passed and his heart is still healthy. October is Down Syndrome Awareness month.Chase, like other people with Down Syndrome, is so much more "normal" than most people think. He also wants to be treated normal too! Sure, he has his set backs and sometimes acts a little goofy when he shouldn't, but don't we all? He embarrasses his 3 younger sister from time to time, but what older brother doesn't? Recently I learned from our Pediatrican(who also has brother with Downs)that on top of it being rare that an 18 year old, like I was, give birth to a child with Downs, but it is also rare that the child with Downs be the first born. I like to think that makes Chase just a little more extra special. 