I sit and type in the Cook Children’s waiting room. The first time I was here, Camden received ear tubes — the same tubes received by tons of kids yearly. My phone rang. It was a co-worker who called to offer prayers. She ended the call saying “God gives special children to special parents.”
I looked around that waiting room and thought to myself, I wonder how many parents here have a child with special needs? Probably not many, yet somehow we were all together as our kids underwent some medical procedure. At that moment, we were all in the same place. What made me a “special parent?” Nothing, I thought; I am just a mom. A mom who wants the best for my three sons. That’s what parents do, right? We stay up late, and we wake up early; that is, if we even sleep at all.
Our boys are five, four, and three at the time of writing. My four year old has a little something extra. Did his extra chromosome change the type of parent I was? Was I given superpowers to help raise him? Nope, I was just a mom. I wasn’t stronger than any other mom, not smarter, or any more resilient. My struggles were different. Conversations with other moms were different. Fears and concerns were definitely different.
Special children are given to special people. Hearing that, I felt as if I I had to be SUPERMOM. After all, didn’t God feel that I could handle more, so he gave me more? I told my best friend I wish God didn’t think I could handle so much.
When Cam was born, my husband was active-duty Army. I was in Fort Worth; he was at Fort Sill, Oklahoma. I was home with an 18 month old and an infant diagnosed with Down syndrome at birth. Oh yeah, when Cam was about two months old . . . we were expecting AGAIN. I was beyond exhausted.
Then there was navigating the military insurance system for a child with special needs. The military has so many acronyms. I was familiar with the most common ones: BAH, NCO, DEERS, CONUS. Cam was born, and I learned two others. Extended Health Care Option (ECHO) offers financial assistance to families of dependents with special needs; however, in order to use ECHO we had to first be enrolled in the Exceptional Family Member program (EFMP). EFMP helps with Permanent Change of Station (PCS) moves for these families. (Yeah, I was a little confused at first too.) There was no one to tell me how and where to get these services. I had to learn about and get the information myself.
We then had to find physicians and specialists in our area who accepted military insurance. Not an easy task because we weren’t living on an active duty base. Cam qualified for services such as ECI. What if we received orders for another base? What if we had to go overseas? That is where EFMP would help. So our next duty could station be a location that offered services Cam needed.
Next was reading EVERYTHING about Tricare (military health insurance). I asked questions and did research to get the name brand of a medically necessary medication covered by insurance even after I was told only the generic would be covered. Occupational, physical, and speech therapies were covered at home with a single copay — rather than going to a facility with a $25 copay at each visit, which was three to four times a week.
When Camden was born, I wasn’t on Facebook (seriously, I wasn’t). He was two when I joined practically every Facebook group for moms of children with Down syndrome. Even with these fellow supermom friends, I still felt lonely. I saw there weren’t many moms who looked like me. Groups that helped were The Colors of Down Syndrome for mothers of color with a child with Down syndrome — and African American Parents Who Have Children with Down Syndrome.
It took nearly three years of this journey to feel it is okay to be just a mom — that I don’t need to be a supermom with some secret superpower. Looking around, I saw other moms of newborns with Down syndrome who were where I was three years earlier. Doing more than it all; feeling lonely, isolated. Attending local events and still feeling alone. Where were the moms of color? Surely we weren’t the only ones in the area? So I started the African American Parents of Children with Down Syndrome – DFW group. I became a special education teacher. My students are mostly minorities. Their parents know I get their struggle — of being a “special parent” to a special child. I tell them and mean it when I say, “It’s okay; you’re doing enough.”
The Fort Worth Moms Blog hosts 20 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.
Michelle is a native of New York City. She is married to Carree, a U.S. Army veteran. They reside in Fort Worth with their three boys: Carree, Jr. (five); Camden (four); and Carter (three).
this would be a great post for the Military City Moms Blog! Very well written. What an inspiration to others.