The Montano’s Making Lemonade
I was about 15 weeks when I found out I was pregnant. As a 19-year-old woman, the thought of having a special needs child was very small in the back of my mind, the statistics that they give you while you are pregnant seem so irrelevant at the time. We were so excited to meet our first baby, a son, we named Ryder James.
Not long after he was born, we were told he had a heart murmur and we needed to follow up with his doctors. I felt so scared and so in love, all at the same time. After visiting many doctors and specialists, Ryder’s official diagnosis is Williams Syndrome.
Williams is a genetic disorder that affects many parts of the body. Facial features frequently include a broad forehead, short nose and full cheeks, an appearance that has been described as "elfin". Mild to moderate intellectual disability with particular problems with visual spatial tasks such as drawing and problems with language are typical. Those affected often have an outgoing personality and interact readily with strangers. Problems with teeth, heart problems, especially supravalvular aortic stenosis, and periods of high blood calcium are common, post pump chorea, and failure to thrive.
Ryder had open heart surgery in 2013, which left him completely disabled, and unable to do anything for himself. That was the changing moment in our lives. We stopped thinking about what we didn’t have, and thought about what we did: our son alive.
Two years after Ryder’s surgery nightmare, we got pregnant for our second and final time. Harper Naomi was born in 2015. Just a few months ago, she was diagnosed with a rare chromosome deletion called 3p 26.3. A 3p26 deletion means that some genetic material (DNA) has been lost from near the end of one of the two chromosome 3s. This can affect development, but how much, and in what way can vary a lot. Some people lose DNA from the end of chromosome 3 with very mild or apparently no effects; others are severely affected, and as adults need considerable levels of care. Harper has severe autism because of her deletion.
When Sevenly reached out for their inclusion and anti bullying campaign I knew it was the perfect fit for us. I spend a lot of time on our social media educating and abdicating for my babies. For our family, we don’t want to feel like we stand out, we want to fit in like everyone else. My kids want to be included. I want people to see their abilities and not their labels. Love always will win and so will kindness.