How it all began
In 2010, I gave birth to my unique third child, Elijah, after 16 hours of labor and an emergency C-section. He weighed 7lbs 4oz and was adorable. When he was born, I knew something was different because he didn't open his eyes until he was five days old. Little did I know that my world, as I knew it, was about to change. I was about to go on a whole different kind of journey.
At the time, the thought of him having a diagnosis other than being a "normal" healthy baby boy was terrifying, so I pushed the thought out of my mind. When he finally opened his eyes, I knew. I searched the internet for symptoms and features of Down Syndrome. He only seemed to have the almond shaped eyes. Maybe that’s how doctors missed it…
He wasn't diagnosed with a chromosome disorder until he was two and a half months old. Before the diagnosis, I never wanted a child with special needs. I wanted "normal" kids. I always had a fear of having a disabled child because I didn't understand what it truly meant at the time.
Him being my first and only c-section baby I felt as if I had missed out on the natural child birth experience with him. I was struggling with depression the first few months after he was born coupled with worry at whether he had a disability.
I went to the Pediatrician and they said, "I don't think he has Down Syndrome. We'll check in a few months." I didn’t agree but didn’t know much about DS at the time.
When he was two and a half months old and eating only an ounce per feeding, I went to the doctor and they advised me to keep a chart of it over the weekend and come back next week. I looked at them like they were crazy! So I called my mom and then went to VCU/MCV ER, and requested a genetic consult.
Immediately, they took him to a room, and over the course of the next two hours, seven doctors came in. They hooked him up to heart monitors and examined him. I was so overwhelmed. I felt so alone…
Then came those words I was devastated to hear: the geneticist said, "We think your son has Down Syndrome." Her words felt like a knife piercing my heart. I kind of already knew, but I didn't want it to be true. I was confused, angry, scared, and sad.
They admitted him for failure to thrive and three days later they confirmed he has Down Syndrome.
I blamed myself, tried to remember anything that I could have done to cause this to happen to my baby. My precious baby, I didn't know what to expect. I knew nothing about Down Syndrome. I cried, a lot. I was already experiencing postpartum depression, but I never told anyone. (What always kept me going was my children and knowing that they needed me.
Now I was even more saddened by the thought that life would be harder for him. He may have health problems, and he may never have the life I had envisioned for him before he was born. I did all the research I could to learn more about his diagnosis. I realized it could have been much worse.
A lot of babies don't survive in utero with chromosome disorders, especially Isochromosomes, and he had two separate ones in two separate cell lines! He was essentially a miracle!
We managed to avoid a feeding tube; the Haberman special needs bottle helped tremendously with this. He was poked and prodded for the those three days until discharge.
Around 20 months old, he was diagnosed with a second, separate but coexisting chromosome disorder, Mosaic Trisomy 14, after he had a bone marrow biopsy. He visited the National Institute of Health, and they conducted a study on him for medical journals. He was the only documented case of these two coexisting chromosome disorders.
Trisomy 14 required that he have bone marrow biopsies along with blood work every 6 months. We opt out of bone marrow biopsies now unless absolutely necessary.
The first three years, especially, were hard with all the doctor visits. Most of our doctors were in Richmond and Bethesda MD at the NIH. I moved my sign business home so I could care for him, and it really hurt my business but he had to see so many Doctors, sleepless nights, and worry.
The first few years, I cried a lot. It felt like no one understood. Finally, I stopped crying and embraced the fact that my child was different. I never knew I wanted a child with special needs until I had one. If I knew then what I know now, I wouldn't have cried at all. This is something a lot of parents go through, especially when they learn the real truth about Down Syndrome and other special needs, and not just what the inaccurate online information says... or at least what it said 14 years ago.
At eight months old, he had a speech evaluation, and the therapist told me that he would not speak until he was more than two years old.
I looked at her and told her, "No, he will speak much earlier than that." She said, "Well, when do you think he'll speak?" I replied, "At 12 months." And sure enough, he was saying words at 12 months, and by the time he was 18 months, he said 10 words and began walking. No one was EVER going to put limitations on my child because they felt his diagnosis defined his potential.
As a special needs parent, I've learned that I'll always be fighting for him. Even in school with IEPs, making sure he had the right treatment and services. He’s now the school has shown us they have his best interest at heart. It was not an easy road. Unfortunately, his aid at his last school was hurt him. We left that school system.
I will say we had an amazing advocate, Vicki Goolsby Beatty, advocated for Elijah in the school system. She is amazing!
He is a blessing. He has taught me more than I ever could have known without him. I am humbled by his determination and how hard it was for him to do things that come so easily to the rest of us, things we take for granted.
Because of Elijah…
In 2012, when he had his second diagnoses of Trisomy 14… I had a vision and founded Thisability nonprofit organization to help other families. I couldn't have done it without my mom and other volunteers who have stepped up along the way.
All because of Elijah...
I also started a group on Facebook called "Down Syndrome, Autism, & ALL SN Medical Educate & Share (ThisAbilityorg)" which now has over 8,500 members from around the world discussing topics relating to their children with special needs. ❤️
He changed my whole perspective on life. He is the reason I have met so many other beautiful families who have children with special needs. I love all four of my children. I wouldn't change any of them. Elijah may have two chromosome disorders, but it is a part of who he is. Our entire family has learned a different kind of love because of Elijah.
I now realize that these two chromosome disorders don't hinder him at all. He is going to do just as much with his life as my other kids. You know what? I always wanted perfect kids, and I got them, at least in my eyes. ❤️
"The mission of ThisAbility is to educate, advocate, and foster awareness and acceptance within our community for both children and adults with disabilities and their families. Providing support and resources for the families we serve, we are dedicated to ensuring they have access to services, programs, and activities that enrich their lives.
ThisABILITY is devoted to making a difference in the community and enriching the lives of individuals with special needs.