Your health equals wealth. This fact rings true for people of all ages. However, some of us aren’t so lucky in this department. Life comes with its own set of challenges when you’re sick, disabled, or have a special needs life. What may come easily to some can be quite a task to accomplish for others. Disabilities come in many different forms, not always looking like what you may think. Some you are born with; some you may develop later in life. Either way, you’re not alone in your health struggles. I’ve been sick ever since I was born. So has my son but in a different way.
How My Health Struggles Started
As a baby, I would projectile vomit constantly with no real answer ever given. Growing up the issue of throwing up never really went away, and I would have stomach aches daily. I would eat, feel sick, and sometimes throw up. Once I was old enough to take matters into my own hands, I started seeing doctors to try and get some answers. After a journey filled with upper GI’s, labs, endoscopies, way too much barium, and fluctuating weight, I was given a diagnosis of Gastroparesis. Since I had thrown up for so many years, Barrett’s Esophagus had developed. I would do my best to control my issues with the right foods, but I could never really get a firm grasp on the situation. An IBS diagnosis would eventually come years later.
Let’s Shake Things Up
When I was 15, I ended up in the ER for what I can only describe as a “fish on dry land” type episode. I looked like I was having a seizure, but I wasn’t having a seizure. I hadn’t lost consciousnesses, I could hold a conversation, and it was only affecting the right side of my body. They had never seen anything like it before. After a few tests and a very long night in the hospital, they recommended I see a neurologist for further testing and sent me home. Time had passed and I wasn’t getting any answers from the neurologist I found. I was still having these tremor episodes, more frequently at this point, and not getting any real help. I grabbed my images and headed to Boston to see a movement disorder specialist. This new doctor told me I have lesions scattered all over my brain but couldn’t tell me why, when, or how they got there. He would do his best over the years to try and give me a diagnosis, but I still don’t have one. He has given it a label, Dystonia.
Was I Late?
Back in my early 20’s, I thought I might be pregnant. I was in a healthy relationship at the time, so it wasn’t too farfetched. I was late so I took a test, negative. Time went by, and still no period. Something was wrong so I scheduled an appointment with my OBGYN. While at the doctor’s, I received some unfortunate news. My body had stopped ovulating due to PCOS (polycystic ovarian syndrome). My doctor reassured me that there was still hope for children, but that it might be challenging. Luckily for me, after about 2 years, my body found its cycle again. However, there was nothing regular about them.
My Son’s Journey
After a lot of time and effort, my husband and I were thrilled to welcome a baby boy. One day while playing with my son, I noticed he wasn’t doing things other children his age were. He wouldn’t babble or look when I called his name. I mentioned my concerns to his PCP and early intervention was introduced. As time went on, more and more milestones passed him by. He wasn’t talking or engaging in typical childlike play. I knew something was really wrong, so we scheduled an appointment with a developmental pediatrician. On July 7, 2020, I sat alone on the floor of my son’s playroom after his assessment via telehealth and was given a diagnosis: autism spectrum disorder, nonverbal, severe. I hung up and cried harder than I ever have in my life: for myself, for my son, for the life I wanted but would no longer get. Moving forward, I would have to let go of everything I thought I knew about parenting, grief the mother I thought I would be, and start from scratch. Nothing about this would be easy, but it would be necessary for MY family.
Anyone reading this who struggles with their health or has a child on the spectrum or requires any sort of extra care: I see you. I’m proud of you. You made it so far, never giving up. For that, you should be proud of yourself. Even though rough days still lie ahead, I hope you find some comfort in knowing that are not alone in this fight with your health struggles. You are strong. Life is tough, but so are you!
