Hellobee

As I said in my last post, when I was diagnosed, my son was four. I was able to stay home with him the first two years of his life, and when I went back to work he went to Grandma-Care with my mom. He started preschool two weeks before my onset.

When I was first diagnosed with a stroke, it was contingent on the results of my lumbar puncture. If you’ve never heard of it (I never had. Also known as a spinal tap.), it’s a test where the fluid that surrounds your spine (cerebrospinal fluid/CSF) is removed from your lower back to be tested for diagnosis of diseases of the central nervous system. This test, combined with MRI imaging, and my physically present symptoms is what was used to confirm the diagnosis of MS.

Once I was officially diagnosed with MS, I still had to wait six months to be “un-diagnosed” with a stroke. All of my doctors agreed that the lesions on my brain were spots consistent with MS and not a stroke. However, one of the lesions I have did present itself with stroke-like symptoms: numbness, loss of motor function, cognitive difficulties, emotional changes, balance impairment, confusion, and extreme fatigue were some of my fun new regular life.

Contrary to every procedure I’ve seen performed on House, M.D., the results on my lumbar puncture took ten days. And during those ten days, I got much worse.

One thing that still makes me cry is that I remember laying in the emergency room having my lumbar puncture, a doctor behind me with the testing supplies, a nurse in front of me holding me still so I didn’t hurt myself, and tears silently streaming out of my eyes onto the generic hospital pillow beneath my head. And somehow, at the same time, I arranged for someone to pick my child up from school.

I feel like there are several ways to know you really truly love someone, and unfortunately we learned quite a few of them that season of our lives. I will never not be moved by the fact that I was so cognitively impaired that I thought a “stroke” was being caused by low blood sugar (of which I have no history) and my first priority was to make sure someone got Isaiah from school. I’m firmly convinced that even though he isn’t my biological child, that is a level of love that you hear about on the news. No, I didn’t rescue my child from a sinking car, a burning building, or any heroic feat of physical strength. But mental strength? Yes. Somehow I did that.

I was admitted to the hospital for three days, and in that time, Isaiah decided to start growing. He lost his first two teeth while I was away, and while I hate teeth, and want to gag thinking of it, I hate that I missed it.

We never would have been able to hide my MS from him, and we really didn’t want to either. He came to visit me at the hospital, and brought me a stuffed animal of his to keep me company.

Once I got home, we had to really work through some of the new changes. And unfortunately it wasn’t easy for him. He had to witness me throwing up, passing out, and giving myself injections. All of which we have taken in stride, but I cannot tell you how much I wish it weren’t something that was part of his life.

I am on a weekly injection to slow the progression and development of new lesions. The goal of this medication was to stop my MS from getting any worse. However, there is no cure, and it will never go away. My husband and I decided that we should allow Isaiah to be exposed to the process of giving myself the injection(in the beginning my husband had to do it for me). So from the very beginning, my shots have been administered once a week at the dining room table.

And on the opposite end of that, we’ve also pushed through and still enjoyed so much. Isaiah and I went on a spontaneous trip to the beach last year. I took a solo trip to Boston and Philly. I’ve gotten into hiking and we’ve gone on a few family hiking vacations. We participate in Walk MS, a charitable event to promote awareness and raise money for MS research.

While MS has been nothing short of an unexpected nightmare for all three of us, here we are. Thriving despite the odds. Not one thing about our life is how we expected, but I hear it rarely is.