With my kids being older, I’d fully started planning my life post high school. The places I could go, the things I could do, etc … Even when my daughter was first diagnosed with Ocular Myasthenia Gravis, I didn’t think that would mean too much of a change for me and the trajectory of my life once she graduated. When she suddenly started experiencing new symptoms and landed in the pediatric intensive care unit due to a Myasthenic Crisis, I started to understand that it wasn’t just her living with this disease, it was us.
Our bond has always been pretty tight, the black Gilmore Girls if you will. Much like Rory, she always has her nose in a book with aspirations for the Ivy League once she’s done with high school. Like Lorelai, I’m a young single mother of a teenage girl fumbling through life. Unlike Lorelai, I also have a son.
My bond with my son has always been a bit strained from the moment Victoria came into the world. She’s always required extra in some form or another and maybe it wasn’t that she required it, maybe it was just that I gave it thinking she would need it more than he. If you come across pictures from the hospital when both she and her brother were born, you’ll notice a bit of a difference. He got tears from his father and she got more of a stoic face. In his own words at the time, their father’s first thoughts upon seeing her were “great, another one” and not in that “I’m so excited” kind of way.
It was then I decided to love her extra hard because I thought she would never quite get the love she deserved. It was probably also in that moment that I, unknowingly, fractured the bond with my son.
Fast forward through to the start of high school and we decided it best if our son lived with his father while “growing into a man”. This actually brought us a bit closer because, apparently, absence really does make the heart grow fonder and he started enjoying sharing his day with me. Fast forward a bit farther to now and that fracture seems to grow by the day as I try to figure out how to effectively parent while caring for a child with a rare, life-threatening, autoimmune disease.
The truth is, I’ve never really known what I was doing as a young mother and certainly have no idea how to effectively give care to one child while simply trying to parent the other. No matter how much love you’re feeling, that doesn’t always seem to be felt when all your attention seems to be going to the other child or catty fights that were just merely annoying before can now cause stress that could trigger symptoms or bring about a crisis.
I’m definitely hoping to figure it out, especially with only a couple more years to go before my baby boy turns 18 and no longer needs me.
