Feeling Guilty

I have been feeling guilty for two days now.

Guilty because my child is supossedly no longer sick with this devastating disease called Mito. Guilty because the friends I have made over the last five years are still living their personal hell with this disease.

I am rejoicing too that he is going to live a lot longer than we were told. But he is going to have to live a life far from normal. He is going to have to go through life being different. And while that is OK it still is hard on all of us. I wanted to be a little league mom and I wanted to be a den mother, and I wanted all of these things for him that will never happen. I will never get to teach him how to drive a car (although I think this may make some of you smile because we all know my driving skills suck) I will never get to play catch with him and he will never get married or have children of his own.

Guilty that I could have prevented him from getting this virus he supposedly caught. Well... maybe I could have prevented it. We'll never know and that sometimes is the worst part. Not knowing.

I am grateful but sad all at the same time.  I am grateful that my son is supposedly no longer sick with Mito and while he is still very medically fragile he is going to live a lot longer. I am sad for all of our friends who still are sick with their own illnesses.

This past weekend when Gavin passed away it made me think of reality and how much reality sucks. It made me have all these horrible feelings about Robbys first months of life when Rob and I were carrying around a DNR letter with us in our back pockets. When hospice was at our house everyday and when we were at the funeral home pre-arranging his services.

Funerals.... I was actually going to call the funeral home this week to update the arrangements we had made becasue there have been several changes in our plans since we made them so long ago. Gavins passing made me think of all the things I needed to update for Robby. All of the reality I was going to eventually face. I took this little boy's passing so personally. His parents and sister are hurting and I wish so much there was more I could do for them. We are praying hard and alot for their family. I found out last night that Robby's medically fragile daycare was also the same agency that provided Gavin's homecare. It is wierd how God connects people.

I was saddened and thinking of all of these things a mother should not have to think about until Wednesday night's phone call from Dr. Boo (see below post). Now I am feeling guilty and happy and sad and tired of all of these feelings, but I know that I must still remain strong for Robby. Especially because he is going to be here with me for the rest of his life. Now I am praying for the strength and support of family. I am going to need a lot of it. I am going to need a lot of help with Robby as he gets bigger and stronger and older. I am going to need to make arrangements for him for a long time to come.

I am hoping that these feelings of guilt go away soon. I know that I should be happy but I have 5 years of healing to do. Because for 5 years my son was dying amd now he is not.