Being a parent is no easy feat. There are so many things to worry about; your child meeting their milestones, being stimulated, making friends, or really just making sure they grow up to be good humans. When you add on the layer of being a parent to a medically complex child, it becomes that much more complicated. Overthinking becomes a way of life.
The First Child
When my son was born, we called the doctor a lot. He was making a weird noise. It ended up being that he just needed us to use the good old snot sucker. Gross. He was not drinking all 8 ounces of his bottle during his feeding. He just wasn’t super hungry that meal, kind of like us. We don’t always want the same amount of food. He wasn’t laughing at all my baby jokes. Really, lady, you think an infant will understand your jokes? Get a grip.
O.k, you get it. You call the doctors sometimes with your minor worries, and sometimes we are just being an overly cautious parent (which in my opinion, is perfectly acceptable and commendable) and sometimes, there may be a larger concern.
When you have a typical child, your worries may not extend as far as a parent who may struggle with a child who has medical needs. And for the record, I am certainly not downplaying the fears that a parent of a typical child may have.
Here is my point. The worries a parent may have with a neuro-typical vs a neuro-complex child of course can share similarities, but there are times that a parent to a child with a disability doesn’t know whether it is a “typical” child concern or one that stems from something deeper. Sometimes, when I am with my daughter, I start to wonder, is her head moving back and forth to say no, or is this a new type of seizure? You start to question everything. She has not eaten all day and is very irritable. Is it a common cold? Or do I need to take her to the emergency room because it is related to her rare disease?
Sometimes our minds go to the worst and darkest places. But I truly think it stems from fear. I know for myself, I am in constant fear. My children and their health and happiness are of the utmost importance to me. But when I fear that something may not be quite right, I start to question… is this justified or is it me overthinking?
Sometimes, I catch myself overthinking something that really doesn’t need a second thought. But I can safely say that my worries are somewhat justified- the fear of the unknown about Jordan’s Syndrome and the future in itself, is a very unsettling feeling.
But when I see that baby grinning at me, or my son rocking out to a song that he asked “Alexa” to play, I forget for a moment about my fears and I am relishing in all of the beauty that lies before and ahead of me.