Today I cried in front of Tiara’s neurologist as I described our life and Tiara’s current state.
Tiara is completely drugged most of the day, but not a good drugged. She is drowsy, irritated and frustrated and can’t stop eating. She has gained 30 pounds since April and crawls most of the time because getting up to walk is too much of an effort. Her blood pressure is elevated and she now officially weighs more than her Dad.
I desperately want to lower her medications but the doctor says it is not safe for me or her to do so at this time. She is only having 2 or so seizures a day but she is still very violent when the drugs start to wear off at the end of the day. Despite the lethargy her doctor doesn’t want to see an increase in seizures which would only make everything worse.
I can’t take her anywhere without a caretaker to help me. This depresses me beyond anything. I can no longer care my for child outside our home by myself.
I tried taking her for a walk on Saturday and she was so heavy in her wheelchair I couldn’t get it up on the curb. I was determined to make it happen and then a sweet woman offered to help as I was clearly struggling. I accepted her help even though that was really hard for me. I only took her 2 miles but I was sweating as if I ran a half marathon and she was ready to be done and almost injured me. So again, I can’t really even take her for walks anymore.
Her quality of life has declined significantly and it breaks my heart, but what breaks my heart more is the fact that I don’t feel safe leaving her for even a moment with Trinity or Tabitha unattended. I have instructed them both not to try and help her or play with her, it’s not safe. Let me help her, not them. Even when she hurts them, their natural instinct is to help her minutes later. I am so proud of them and their ability to love and not blame and yet it scares me. They know she can’t control herself and yet the pain she causes is real. So what are our options?
It appears after talking to her team, the options are limited. Change behavior medications and get more help to watch her in our home. That’s it. No one, including myself can come up with any other ideas. I know we are not alone in this struggle because there are lots of families dealing with these exact same issues as us, you just don’t know them. Our kids are struggling medically and emotionally and there is no answer but drugs and they don’t always work. It is heart breaking for everyone involved. The child, the family, the extended family and all those who know and love us. Not being able to help, not knowing how to offer support, everyone is affected.
So, no I haven’t been blogging, or walking or unpacking or doing much of anything except feeding everyone and surviving.
I have heard from some people that they don’t always understand why I continue to do what I do with Tiara and am I seeking the help that I need?
So here are a few things I may not have conveyed to you in the past but I assumed you knew, but you probably didn’t.
Tiara feels remorse after she hurts someone in our family. She can’t control herself and yet she feels horrible after an episode and apologizes over and over again.
I am in constant contact with her neurologist and psychiatrist via email and or phone.
She receives support from the Regional Center and IHHS and they always help us in anyway they can. Her caseworkers are amazing.
Tiara’s doctors at UCLA do research in Tuberous Sclerosis, her neurologist runs the TSC clinic and both are experts in the field. She has the best doctors on the West Coast.
So there you have it. Life isn’t great and because I try and stay positive, I haven’t really been in the mood to tell you how crappy things are around here. Despite all the bad stuff, we love our new house, Tabi is happy at her new place, I still love my husband and Trinity is growing like a weed. She is 5 foot 5 at 12 years old and I suspect will be the tallest of the Goff girls.