1. Write about something that is frustrating you.
I’ll tell you what, learning about Epilepsy is not only frustrating me, it’s frustrating my whole family. Even more than me, it’s frustrating my little niece Harper and her mom the very most. Poor Harper has not had a ton of relief since her Doose Syndrome diagnosis and all of her caregivers are doing our best to hang on tight.
As much as I love her and as big of a part of my family she is, I am not Harper’s mom and therefore have been shielded from a lot. I do not go to her doctor appointments or hospital stays. I am not the one squished into a hospital bed as nurses come in throughout the day/night to take vitals and check on her. I have not had to call for an ambulance or administer emergency medication yet. Other than just thinking about her all of the time, I’m limited to only the interactions I have with Harper when she’s in my care so I miss quite a bit of the seizure activity…but not all of it. I get just enough to completely traumatize me and absolutely exhaust her, but Harper’s mom is consumed by it all. There is no being shielded from a diagnosis like this when it is your own child. You are constantly on edge and studying your child’s every move.
I have had fairly serious concerns with my own kids at various points in their lives. I sometimes couldn’t sleep with worry, I sometimes cried after forcing them off to school, I’ve made countless appointments for doctor visits and even therapy. We’ve had some scary times…but always there has been an end in sight. I knew whatever issues we had were resolvable in time. I believe that with Harper too, but the process of finding an effective treatment for her has been more than frustrating. It has been heartbreaking, gut-wrenching and exhausting. I cannot wait for her to finally get some relief once the perfect combination or medication and diet is reached. This baby (and her mom) (and her yaya and everyone who loves her) deserves some relief!
(video here)
John Holton says
Harper seems like such a little sweetie and I feel badly that she’s going through this, not to mention for her mother and the whole rest of your family. I’ll keep all of you in my thoughts and prayers.
Abby says
That would be so difficult to deal with. My heart goes out to Harper and all who care for her. Hoping for a solution soon!