I’m a special needs mom.
Well, I don’t (or didn’t) actually think I am. In recent weeks, I’ve been called that twice. It was a bit shocking, but I wasn’t offended. The term “special needs mom” conveys a sense of strength, knowledge, and sacrifice I admire in those moms who conquer every day with a child on the autistic spectrum or a child with intellectual disabilities or a child with impaired mobility or any number of other special needs.
I’ve danced around calling myself a special needs mom. I’ve used terms like “medically fragile” or said my daughter has “some challenges,” only trying out the term special needs mom a few times. I’ve always recognized that my youngest child isn’t “typical.” Most children don’t develop typically when they are born at 24 weeks and only weigh 1lb 8oz, like my daughter Charlotte.
During my daughter’s extended NICU stay, we were well-prepared by the staff that our child would likely have a myriad of problems and delays. Some of those materialized; many didn’t. So, today we have a nearly 4 year old who is barely on the growth chart, is frequently hospitalized for lung infections, and is slightly behind in development of fine motor and balance skills. We also have a little girl who is smart and funny and loves to make us all laugh with knock knock jokes. She knows her alphabet well, can count higher than me some days, and already knows more Spanish than I can recall (despite taking it for 4 years). She also requires daily medications and visits to multiple specialists, as well as regular physical and occupational therapy.
We’ve somehow landed in some sort of special needs limbo.
Talking to parents of “typical” kids can feel a little disconnected and a bit disheartening to think about some of what she can’t do. Yet, talking to special needs parents can feel a bit like I need to toughen up. Not that a special needs parent would ever intend to make us moms in limbo feel that way. It’s just that, as overwhelming as all of our questions and unknowns and whys can feel, the stark reality is they often have exponentially more on their plates.
For me, being in this limbo of the special needs world has made it important to find my tribe. To find my daughter’s tribe, too. It has meant enjoying the company of other kids who are living miracles like Charlotte – mostly other preemies – but also babies who have heart problems, lung problems, and more. Our expectations for our children are just a bit different than others. We revel in the pound gained, the sudden ability to write or use a spoon, or a cold and flu season without a hospitalization. We have an over-abundance of hand sanitizer available and never judge each other’s germ-a-phobe ways. We share frustrations with therapy waiting lists and figuring out which schools will best help our children grow and develop to their potential. We consult about what specialists have been helpful and cry together when someone just needs to get it all out. Mostly, we share the journey of making sure our not-so-typical kids don’t fall through the cracks in a system that sometimes has trouble identifying kids who are a little in between two very different worlds.
I hope that today, on Prematurity Awareness Day, all the other moms in this limbo know they aren’t alone, and our tribe is always open to someone who needs us to cheer them and their child along this journey.
Vickie was born and raised in the New Orleans area and currently works full time as a social worker. She and her wife Katie are enjoying raising their two daughters, Claire (8) and Charlotte (3). When not working or spending time with her family she enjoys giving back to other NICU families with a non-profit she co-founded, Delivering Hope NOLA.