So, DH is home and is in a wheelchair. He can walk short distances with a cane, but it wears him out quickly. He has more medication than I’ve ever seen before, and he still has bouts of excruciating pain. But this entry isn’t about him. It’s about me dealing with his illness and the possible future that my daughter might have faced.

First of all, I have no idea how I could have physically, emotionally, or financially handled having a disabled daughter and a disabled husband at the same time. How could I split my time between ICU and NICU?

DH is dealing with many things that my daughter would have faced, had she survived. Nerve pain, so I’m told, is a totally different beast than regular pain. The ataxia is frustrating and embarrassing for him. The wheelchair is a giant pain in the ass – lifting it in and out of the trunk is doable, but I am exhausted after every outing, and he’s only been home two days.

I have to clean, cook, work, do laundry, take him to his appointments, go to my appointments, and help keep track of his medical issues. I’m not resenting him at this point, but I’m just tired. Tired to point that I feel sick, like I’m going to throw up.

Is it horrible that feel relieved that I don’t have two disabled people to care for? That I feel like I have gotten confirmation that I made the right decision to prevent all this pain for her. what my husband feels is just a fraction of what she would have to put up with.

I’m still terrified. We saw a new neurologist yesterday, and she is worried about a relapse or that he has a long-term version of this syndrome. We think his heart and lungs are stable now, but she told us that people with this syndrome and his symptoms have a 50% mortality rate.

50%Long-time readers will remember that I have an obsession with statistics. My baby had a 1:1000 chance of myelomeningocele. DH had a 1:100,000 chance of GBS. He had a 1:50 chance of dying.

I don’t know what to think of all this, but it’s been running around in my head for the past few days.


5 thoughts on “Realizations

  1. Statistics-ugh. I feel stupid when I sometimes say in response to any statistic either “I hate math” or “I don’t believe in statistics.” I am keeping you and your husband in my thoughts and prayers. His pain- that really really sucks. You on overdrive- that sucks as well, in a different kind of way. You will get through this!!! Hugs,

  2. My goodness….I know how tough this is. I was the soul caretaker for my husband when he had cancer. The hardest thing for me to do was ASK for help, but I assure you the people who love you want to help…so do not be afraid to ask 🙂 Maybe a friend can start a meal train for you so at least you don’t have to focus on cooking?? I seriously know how hard this is!!!!!! You are in my thoughts!!! ( and do something nice for yourself….you will need it).

    • I just want to stay home and do it all myself. I know that’s not healthy, but I do. I think it’s because the illness makes me feel so helpless. I always try to control what I can. I can’t control his pain or ataxia, but I can control the cleaning or the food. There is also a part of me that feels like people just think I’m exaggerating because this much bad luck just isn’t normal.
      I hope no one really thinks that, but I do feel like little like a giant bad luck charm.

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