August of 2016. We have been in our house in Fort Atkinson for a few months. We knew our unborn child had some heart “issues” and were made aware that there is a chance this issue was connected to him having Down Syndrome. I was in complete denial that could even be a possibility. I was born with Atrial Septal Defect (ASD) of the heart. Basically, a small hole in the heart. When I was two years old, I had a surgery to correct it. ASD is quite common and “easy” for a heart surgeon to repair without any further consequences. I was later told it’s the “best” heart condition to have.
With all our kids, we did an extra ultrasound with a heart specialist. I believed having a child born with ASD was a very real possibility. That really didn’t scare me at all. I basically looked at it as no big deal. When our son was identified as having a heart issue, I convinced myself it was ASD connected to me having an ASD. Nothing else genetic. Nothing else.
We had a few heart doctors that believed the baby could have Down Syndrome. I completely removed this possibility from my thought, there is no way the child could. It had to be related to my heart issue and it is no big deal. We had a Doctor suggest we get a blood test to find out for sure. This test would confirm what I knew already. Michelle went to St. Mary’s hospital in Madison for this test. I was to busy with my work to go with her. I knew it was not big deal anyways, just a routine lab work. We would get back the result I knew we would and we could move on with our disrupted lives.
When we moved to Fort Atkinson 2 years earlier, we had a fantastic dog, Fiona Sadly she died of cancer a few months before we moved into our house. A week after she passed, we got Rosie. She is a little dog full of energy. In Late July of 2016, we decided our life wasn’t full, so we got Wrigley. They are both rescue dogs and they are still with us. I love them dearly. We got Wrigley on Sunday July 31, 2016. Life was smooth sailing. Everyone was healthy, I was in complete denial that anything could be wrong with our baby.
Welcome to Monday. Monday, August 1st, Michelle received a call for a job offer. She was offered (and accepted) a Full Time position with the School District of Fort Atkinson as a Counselor. Things were really starting to work it’s way out for a smooth transition and to settle in.
As a typical Monday I was very busy at work. Michelle tried calling me several times, my phone did not pick it up, or I ignored it. Either way, I don’t remember. Finally she reached me and there was screaming on the other end. Trent (8 years old) was on his scooter going down a hill. He stopped and his scooter swung around and hit his lower right leg. The scooter gave him a huge “spiral break” in his leg. By the time I raced home, he was already off to the hospital and received a cast from above his knee to his toes. Just in time for our summer vacation to Northern Michigan to go swimming, hiking, etc.
Tuesday went by and I frankly forgot about the blood test Michelle had the week before, then Wednesday….. August 3, 2016.
It’s funny in life you live so many minutes, but remember some like they just happened. Our wedding, our kids birth and The Call. I pulled up after work to our home. Excited to see the kids and play with the new dog. Michelle was on the front porch, on the phone. She hung up and said directly to me “Our Baby has Down Syndrome.” I only said one word “F—.” That is it. Threw what I was holding to the ground and started to cry. I thought at the time this was the worst news a person could get. I frankly had zero positive thoughts. Why me, why us? Our life was really getting on track and now this will ruin our life. I never imagined how wrong I would be and had no reason to be upset!
The reason write this is mainly to speak to someone who is going through this or knows someone who is going through this. Fast forward 3.5 years, if I knew what I know now, my reaction would be 100% different. Having a child with Down Syndrome is the biggest blessing a parent could have. I AM THE LUCKY ONE. I’m not saying that to convenience myself, but to share with you. Our son is amazing and our life was so incomplete without him. What we would learn about Down Syndrome is life changing.
I look forward to sharing our journey. There are so many bumps ahead, the Doctors, the Birth, the Heart, the Job, the business the Move(s)…. Then there is my mother fighting ovarian cancer in 2016 for almost 2 years.
Thank you for reading.
Malix 