How it all began
In 2010 I gave birth to my unique 3rd child, Elijah after 16 hours of labor and an emergency C-section. He was 7lbs 4oz and adorable. When he was born, I knew something was different with him because he didn't open his eyes until he was 5 days old, I just had that intuition. Little did I know my world as I knew it was about to change. I was about to begin a whole different kind of journey...
At the time, the thought of him having a diagnosis of anything other then a "normal" healthy baby boy was terrifying so I pushed the thought out of my mind. When he finally opened his eyes, I knew. He wasn't diagnosed with a chromosome disorder until he was 2 1/2 months old. Before he was diagnosed I never wanted a child with special needs. I wanted "perfect" kids, I always had a fear of having a disabled child because I didn’t understand what the REALLY meant at the time.
I found out early on I was going to have to advocate for him, that’s what us SN mommies do quite often I’d soon come to learn. Medical professional said “ I don’t think he has Down Syndrome, we’ll check in a few month” when he was 2 1/2 months old he was eating an once per feeding I went to the Doctor and they said keep chart of it over the weekend and come back next week. I looked at them like they were crazy, went to VCU /MCV ER and requested a genetic consult. Immediately they took him to a room and then over the course of the next two hours 7 doctors came in. They hooked him 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 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. I blamed myself, I tried to remember anything that I could have done that caused 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 having postpartum depression because of the C-section. I never told anyone. 😞 (what always kept me going was my children and knowing that they needed me and I always needed to put them before me) Now I was even more saddened by the thought that life would be harder for him, he may have health problems, he may not ever 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 utero with chromosome disorders especially Isochromosomes and he had 2 separate ones in two separate cell lines! He was essentially a miracle.
They admitted him with failure to thrive...we managed to avoid a feeding tube, the haberman special needs bottle helped tremendously in this. He was poked and prodded for the next three days until discharge and then for the next 4 years... it’s slowed down a bit now. We opt out if bone marrow biopsies unless absolutely necessary.
The first 3 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 my baby came first.
Around 20 months old he was diagnosed with a second separate but coexisting chromosome disorder also, Mosaic Trisomy 14 after he had a bone marrow biopsy. He visited the National Institute of Health and the did a study on him for medical journals. He was the only documented case of these two Co-existing chromosome disorders.
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 the learn the real truth about Down syndrome and not just what the inaccurate online information says... or at least what it said 10 years ago.
At 8 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 gonna 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 IEP’s, making sure he had the right treatment and services. Luckily now the school has shown us they have his best interest at heart but it was only a few years ago I had an amazing advocate, Vicki Beatty, help me advocate for Elijah in the school system. She was amazing!
He is a blessing. He has taught me more then 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 easy to the rest of us, things we take for granted.
In 2012 I had an idea that I founded this non profit organization to provide information on resources to other families. I Couldn’t have done without my mom and other volunteers that have stepped up along the way.
All because of Elijah...
I also started a group Down Syndrome, Autism, & ALL SN Medical Educate & Share (ThisAbilityorg)
on Facebook which now has 8,500+ members from around the world discussing topics relating to their children with special needs. ❤️
He changed my whole perspective in life. He is the reason I have met so many other beautiful families who have children with special needs. I love all 4 of my children. I wouldn't change any of them. Elijah may have 2 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 2 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, in my eyes at least. ❤️
The Mission of ThisABILITY is to offer support and encouragement to families who have or are expecting children with special needs, to ensure they have the Resources and Information they need available to them, to Educate and Advocate, and to create Awareness and Acceptance.
ThisABILITY is devoted to making a difference in the community and enriching the lives of children with special needs.