First, I want to say how excited we are about the response we got from the last post about the walk! We had so many people that want to come to Houston to walk with us in February. It will be a great day to spend together and raise awareness for mitochondrial disease. Remember if you can’t go to Houston, you can walk with us virtually from home.
Next, I had a lot of people that said they wanted to comment on the post last time but had to have a profile and didn’t know what to do. I believe all you have to do is create an account with a username and password. Once you do that, you can leave comments.
Finally, I wanted to update everyone on the latest news. I took Cal to the doctor last Monday, October 11th. It was just an appointment with his pediatrician to get his 18 month shots. What was supposed to be a simple visit to get shots turned into a very sad and emotional day. My mom was with me at the doctor that day, and we ended up having a very intense and emotional talk with Dr. McKenzie. Dr. McKenzie mentioned that his breathing was very shallow. She also told me that she thought it was time for me to stay home with Cal. I think it shocked me at first because we have been going about our daily routine and a part of me forgets that Cal has a terminal illness. I have just been waiting for the day to come where he is healed. I think I was so upset because I felt like my hope was gone. I did appreciate Dr. McKenzie being so honest with me though. She is the best doctor I have ever seen in my 26 years of life. She is caring and so compassionate. She told me that this is time I won’t be able to get back with Cal, and I couldn’t agree with her more. She said we can always make more money but we can’t have more time. So, with that being said, I called in for a sub on Tuesday and haven’t been back to school. I will be off for six months and looking forward to every minute I get to spend with Cal. I am so blessed to work for a principal that is caring and compassionate, too.
Another thing we talked about on Monday was hospice. Dr. McKenzie wanted me to spend a month with Cal by myself at home and then start to think about hospice. However, I think we might be looking into it a little sooner. Cal is very uncomfortable and has a lot of secretions in his throat. The only way to get medicine to help those things is through hospice. It is the hardest decision we have had to make thus far. No parent should have to decide when to call hospice. We have to stop being selfish though and help him be comfortable. Wouldn’t we want to be comfortable if we were in pain?
We continue to need your prayers. This is a very difficult journey that we are getting through with our faith in God and love and support from family and friends.