Welcome to the club you never wanted to join but now need and can’t ever leave.
The term “special needs” is widespread – from a peanut allergy to a terminal condition. But it also is an understanding among us parents that “things” didn’t go quite as you thought.
I had the storybook life and still do; it’s just a different book than I envisioned.
I met my husband the first day of college. We got married 2 weeks after graduation. We traveled, started our careers, and moved twice during 8 years of child-free marriage.
I had a wonderful pregnancy – wonderful in the way you look back fondly at morning sickness, fatigue, and bodily changes.
I even had a great delivery. Scott Robert entered our family a healthy baby on March 27. Our life was forever changed.
And then Scotty started doing “his thing.” What looked like an eye tick 10-50 times a day with funny breathing was later diagnosed as a seizure. We spent weeks trying reflux meds and awaiting appointments with specialists. I called every day for cancellations with the neurologist and gastroenterologist. Every. Day. I don’t know if they were done with my calling or if there was actually a cancellation on May 20.
The neurologist saw a seizure and immediately sent us to the emergency room. Our lives were forever changed again.
Scotty went through a battery of tests that ended with, “Do you have any questions about lissencephaly?”
We had so many questions and we still do.
Lissencephaly means “smooth brain.” This impacts everything – he has seizures, cortical blindness, a feeding tube, and physical and mental developmental delays. We were told average life expectancy is 2.
Now 5 ½, Scotty is like an infant.
We have been through some tough times and made tough decisions, but we now look back and are thankful for the feeding tube that ensures he gets his medications and formula. We are thankful for the ketogenic diet that has allowed us to wean him off 3 seizure drugs. We are thankful for his fundoplication surgery, which prevents him from throwing up daily and eroding his esophagus. We are thankful for the therapists that come in our home every week to stretch him. We are thankful for the nurses who spend 40 hours a week caring for him. We are thankful for the school district and special ed teachers, who make accommodations for Scotty to participate. We are especially thankful for our families, who have moved to Texas to be involved in Scotty’s life. And I am forever thankful for my husband, and that we are a team when it comes to Scotty’s care.
What that means is I have asked for a lot of help. I used to pride myself on not needing help and being independent. Nope. I need help. And I am now asking for it from my husband, my parents, my in-laws, my best friends, and my employer nearly every day.
I haven’t written about Scotty to anyone besides friends and family, but I am writing this today to thank all the special needs moms who came before me and are an email, phone call, Facebook post, or text away when I have a question or when I need someone who truly understands what it’s like to have a child who doesn’t have the same experience as others, which means I don’t have the same experience as others. I write this to say: Use resources like this website and other moms like me to be your support. Ask for help. You’ll need it. You’ll be stronger for it. And most importantly, you’ll be a better parent. Explore the Connecting With Other Parents page and the Find Services, Groups, and Events section of this website to see what’s out there for you and your family.
Making a decision that goes against your doctor’s advice is tough to do but sometimes we must make those decisions. Learn about one family’s decision-making process when in this position.
Starting home health services is sometimes an emotional process because, as parents, we believe that we can care for our child better than anyone and that we should be the one caring for them. However, some of us need help because of the complexity of our child’s needs.
Having some time to yourself when you have a child who must know where you are, always, can be a bit wearing— but also something to be grateful for.