October 2nd- Genie and Sam

Diagnosis story

“August 27th, 2018 is a date that will be forever burned into my mind. It was the day that every pregnant woman looks forward. The day that I would have my 20- week ultrasound. For some reason, I wasn’t as excited as I was for my other pregnancies. You see, I had a ten-year old and a seven-year old and I was 43 years old. This was an unexpected pregnancy and I was old. I felt old. I knew that this ultrasound could possibly tell us something that I didn’t want to hear. I just had no idea the things that I was going to hear. We were excited to hear that the baby was a boy. Then the technician stepped out and the doctor came in to finish the scan. After a few moments of looking, the doctor began to show us the “markers” that they had seen that indicated that our baby had Trisomy 21. My heart sank a little, but then sank further when he told us that the baby had at least 2 heart defects. All of a sudden, for me, the diagnosis of Down syndrome was secondary. I knew that having a child with Down syndrome would present challenges, but I was more scared at the prospect of having a child with a complex congenital heart defect.

As the weeks continued to go by, we wrestled with and came to terms with the idea that we were going to have a child with special needs. We shared our news with our family and close friends and received overwhelming support. Meanwhile, I had to switch doctors because the hospital where I was going to deliver didn’t have a NICU level that was high enough to support the needs of a baby with this heart condition. So, I juggled doctor appointments and specialist appointments and school obligations with my other children. We eventually shared the diagnosis that our baby was facing with the congregation at our church and our wider group of acquaintances through an interview on a Sunday morning with our pastor which was then shared on our podcast. We continued to receive overwhelming support. My friends threw me a baby shower and we tried to carry on as normal.

Eventually, the long awaited for day arrived. I was induced because my blood pressure had risen to an unsafe level (again, I’m old) and my doctors were not comfortable with waiting any longer. Our beautiful little Samuel Benjamin arrived quickly five days before Christmas and began to charm everyone he met. We originally thought that our little guy would only have to stay in the NICU for a few days, but Christmas came and went, and he was still there. He was doing better and then his oxygen saturation levels began to drop. He ended up having to be transferred from the NICU to the PICU at Advocate Children’s Hospital in Oak Lawn because they would be better able to take care of his heart. Sammy spent 3 weeks in the hospital before he was able to go home. He would end up being readmitted to the hospital three more times because of his heart. Finally, on April 24^th, 2019 Sammy had open heart surgery and the surgeons fixed his heart. So far, Sammy has spent 55 days in the hospital.

Sammy brings joy into the lives of everyone he meets. He has charmed his physical therapist and his occupational therapist. I never realized the strength that it takes to even sit up. However, he works hard in therapy and he is making great progress. I have been blessed to meet so many great people since Sammy was born. Parents in our community refer to themselves as “the lucky few” but I don’t believe in luck. Instead, I choose to call myself part of the blessed few. I believe that God blessed us with Samuel, and He has big things in store for our little guy. Sammy already impacts our world in a good way. I can’t wait to see the good things that will come about from his life.”

-Genie, mom to Samuel

We are looking forward to Sammy joining us in 2 & Under, Destination Discovery, or other young learner session soon!!!

P.S. Genie, you aren’t old:)