Well today is one of those days…one of those bad, bad days! I have no desire to do anything. Katy and her special heart is weighing heavy in my mind.
This time of year is especially difficult for me, due to Kathryn’s birth. Although, being the best day of my life, and it was. It was also a very traumatic day for me. This year it is especially difficult, because I fully expected Katy would have her new heart by now. We are approaching our 5th month of being listed. Many of the heart babies I know that have been transplanted all seemed to have their new heart by the third month.
The average wait time is 6-12 months, that said Katy’s doctor expected it by Christmas as well, purely based on her experience, since there is NO WAY to predict when a heart will become available.
Although, Kathryn continues to be stable and her medicines keep her healthy. I know she is getting sicker, I know she is no where close to gaining the amount of weight that she needs to be gaining. I know our days are numbered. It’s a horrible feeling. What’s worse is I know Mike is feeling all these same feelings, which makes it even scarier, since he is usually the optimistic… she’ll be fine member of this team.
I also know that there is not a damn thing I can do about any of this. Which makes it 10x worse.
I also feel like as much as our friends and family try to relate, try to understand, that they really have no idea just how sick our little girl is, and how sad and painful and tiring our day to day life is. I try to put a brave face on… but our life is very difficult. I am sick of it. I am sick of pretending we have everything under control… when in all reality I have never felt so out of control in my life.
No one is sleeping…even though I take enough sleep meds that should put a horse down. Mike is balancing everything… there are many days I am just useless. It makes me so ANGRY!!!! I want to know what its like to just be normal… I hate that I will never ever know what normal is.