I have been thinking a lot lately about Trichothiodystrophy and it’s toll on our entire family. The other day I sat in the doctors office, this time for myself, and went over all that my daily tasks as Bubba’s mother requires of me. After going over all of the “issues” that I am having the doctor and I laughed at the fact that most of the things only happen or appear in the “older” stages of life. When I asked the doctor if he had an explanations he simply said “my dear, you have not slept in 11 years…. It is catching up with you. Our bodies can only handle so much.” I have always thought about what TTD does to Bubba’s tiny body but never did I think that I would some day be suffering from my own physical side affects from the same illness, indirectly of course. Don’t get me wrong Bubba’s physical pain and daily burden that his body puts on him is and always will be much more than the little problems that I will go though but it is crazy to think of what a tight hold this illness has on our entire family.
Friday night was the father son camp out for our church. While other dads were packing up there cars with sleeping bags and tents we were hooking Bubba up to a machine to receive nutrients for his little body. At one point in time Jason was able to take Bubba to this fun outing but as time has passed and this illness has progressed it is not possible any longer, there are just too many medications, equipment, and “issues” to deal with now. We have never been on a camp out as family.
Saturday I took the kids to the mall to get out of the house and run some errands. Bubba had been having a hard time and I just knew that the train at the mall would cheer him up. Before I knew it Bubba was seizing and vomit was every where. We had to leave quickly with none of our errands accomplished. We made it home and my daughter wanted me to make bracelets with her, I was holding my sick little boy and was unable to. I had to give him an injection of valium to stop the seizures and make sure his airway was unobstructed. It broke my heart that I couldn’t do something as simple as make bracelets with her.
Today I went to Bubba’s school to help with the petting zoo and pony rides that we had arranged for the special day children. When I arrived Bubba’s aid told me that Bubba was not doing good. He had been having seizures {a different kind than the vomiting ones} and they were getting bad. It took everything in me not to start crying right there on the lawn at the school, I waited until I got to my van. There were no pony rides, no petting the animals just a trip back to the neurologist. {second in one week.} He is now on three medications for seizures. I am hoping that we will quickly find a solution.
Now, why am I having this BIG pity party for one you ask….. Well, let’s face it…. This IS my life, this is real. I am not sharing this with anyone to make you feel sorry for me or my family. I am sharing these very true and real feelings because I want other parents out there that are going through the same thing to know that THEY ARE NOT ALONE. I have met an amazing and overwhelming group of “friends” on line that share the same hardships. In all honesty at times I receive more support from friends that I have never met than with those close that I would expect to be more compassionate.
Today a friend posted these words “everyday may not be good, but there's something good in every day.” I agree with these words whole heartedly. I tell the mother’s that I do peer mentorship with “have your moment… get mad, cry, grieve…. What ever you need to do, then pull yourself together and be the mother your child needs you to be.”
So, that is what I will do tonight …I will get mad that my body feels so old and is turning on me. I will the grieve the loss of father camp outs and missed vacations. I will cry over the pain that my Baby’s body is having to endure and my inability to “fix it.” Then tomorrow morning I will wake up to Bubba’s HUGE smile and it will all be better.
