“In December 2009 Mommy and Daddy met. Daddy thought Mommy was pretty so he asked her to go on a date. Mommy and Daddy went on date to the movies and dinner. Mommy thought Daddy was so funny. Mommy and Daddy enjoyed spending time together.
The next month Mommy found out she was having a baby! Mommy and Daddy were very scared because a baby was a big surprise. We were also very excited.”
I miscarried Liam’s twin at 8 weeks. I was so relieved to still have one (which is all I thought I had), I wasn’t that upset about losing one. Twelve weeks in, I learned I had partial placenta previa and my pregnancy was labeled “high risk.” Due to the risk of a second miscarriage, I refused an amniocentesis.
X-Men are Real
Liam was just over 6 lbs, quiet, and pure magic. It was mad love at first sight. I was an emotionally confused, anxiety-filled maniac. He was so little and didn’t do anything but eat and sleep (easily confused with death). Oh, my shit! I was so afraid of him dying or me not being a good mom.
Just After Liam’s First Birthday
He was diagnosed with three congenital heart defects (CHD). This was the moment I realized that from here on out, life was going to be a bit different. I went home with a folder filled with information on patent ductus arteriosus (PDA), ventricular septal defect (VSD), and bicuspid aortic valve (BAV). It all started with that damn folder.
I Knew What I Didn’t Know
While I was obsessed with observing Liam for signs of apnea, cyanosis, and shortness of breath, I began noticing other characteristics and delays. My research continued and by the time Liam was two, I knew I had a special needs child. Every resource I found tossed the autism label at me and insisted it explained it all, but I knew it didn’t. I refused an autism evaluation until I finally got to the point of collecting enough information, that I felt slightly less crazy finally presenting my findings to Liam’s cardiologist. I knew Liam had an extra chromosome now I just had to prove it. “Knowing” all this didn’t make any of it less terrifying.
At 3 Years Old
Liam was diagnosed with speech apraxia, dyspraxia, receptive and expressive language delay, and sensory processing disorder. A short time later, he was confirmed to have Trisomy 13, a rare genetic disorder labeled “incompatible with life.” Liam has a rare chromosome arrangement called Complete Isodicentric Trisomy 13 Mosaicism. That initiated a shit-ton of tests, which found a rare congenital diaphragmatic hernia (leading to more surgeries). Liam finally had an autism evaluation wrapping up his list of diagnoses; autism, social pragmatic communication disorder and global developmental delay. Since then, we have been on a new journey; one to fulfilling health and happiness potential.
Liam just turned 7 in October!