One of the reasons I started this blog was to share my personal experience raising children and encourage others. I particularly wanted to share my experience raising a child with special needs. I’ve not made it a secret, our daughter was diagnosed with microcephaly at five months old when her head circumference fell off the growth curve. When she was born, doctors told us that she might not walk, talk, see, or hear…Her birth and the days following were truly terrifying: we weren’t sure she would live. But here we are, 11 years later raising a precious, wonderful blessing from God.
When we first got the diagnosis, Google existed. So I was able to look some things up…but it wasn’t always helpful. Most of the information was broad and covered such a huge spectrum, it made it difficult to “put” Jac into a category and figure out where life would take her. It also wasn’t the same as human interaction and asking direct questions.
TRYING TO GET ANSWERS
We also (because of the military) had to enroll in EFMP (Exceptional Family Member Program). While at West Point, our coordinator told me that there was another family there who’s daughter had a similar diagnosis of microcephaly…I was given her number (with permission from the mother) to reach out. When I did, she didn’t respond. I was bummed because I really just wanted to make a connection and ask her questions.
So all these years later, I started searching for microcephaly support groups. (Why I didn’t think of this before is beyond me.) I found one, and we have a range of still in the womb with a diagnosis to adults with microcephaly! It’s amazing.
JUST LIKE WE ARE
I’ve found that so many parents (especially parents of babies or young children) post with questions about how things will turn out for their child. It’s actually somewhat like a “typical” moms’ group that asks about developmental stages…but for kids with special needs.
So I joined this group with thoughts of the same thing…ask questions and see where children old than my Jac are…but you know what? My mindset has changed. I don’t answer every question, but I do try to share when I think it’s appropriate…Just like “neurotypical” kids, micro kids or any kid with a disability of any sort will do things on their own time. I know this may not seem helpful, but it’s true. And while I see adults interacting in the group who have microcephaly, or their parents are sharing their progress (which gives me great hope) I STILL don’t know how MY child will turn out….Just like I don’t know how my boys will turn out.
DOCTORS DON’T KNOW EVERYTHING
I will say, doctors don’t know everything, and while it’s easy to give in to the doom and gloom (especially at a time when you’re so vulnerable after birth), keep hope. Keep parenting. I won’t love any of my children any more or any less because of their abilities or accomplishments. I’ll just be excited for them when they have goals and meet them…whatever they may be.
A HUGE WIN FOR JAC!
Sharing a huge accomplishment, Jac got on the mats for the kids’ Brazilian Jiu Jitsu class last night. While this may not seem like a big deal for some, it was monumental for my husband and me…and of course for Jac! We were so proud that she got out there and did it. Other parents recognized that too (because they know our story), and they were happy for her too.
So parents, know you’re not alone. Raising children is hard! We all worry about our kids and their development and where they’ll be. God has a plan for each of their lives. Find what motivates them and what they love, and they will flourish.
Until next time…