Today was Josh's big day! He made it to 5! That was such a monumental event since that was what Dr. Hirsch always told me to get to with him/Mito kids. The very thought that you didn't make it to 5 months just makes my heart want to cry. I am grateful for him and the time we had with you but I really hate this disease and the havoc and lack of knowledge that comes with it. Every day I pray that something will happen so that other parents don't have to know the pain I live every day. Before you were gone I worried all the time that I would wake up to one of you dead and my worst nightmare came true that morning you left us.
I kept myself busy most of the day in the kitchen and running around. It came to presents and I had to give that job to daddy. The thought that you weren't there to be helping Josh open them just broke my heart and I couldn't do it no matter how bad I wanted to. He misses you so much and it just hurts more to know how much he misses you and how I can't fix that hole in his heart. God did he love you and still does! He was so mad at God the other day, he started waving his fist in the air telling him that he missed you and that he was not happy he took you but that he better take care of you. Every part of me wanted to cry but boy could we all learn a lesson from him. I think in many ways that is why he tells us we must come as child to Him.
The day went well and everyone had a good time. I was so proud of your big brother for wanting his party to be something special. You had a party hat on your urn...he had to make sure you were part of the day..and also a lei in front of it and two on your picture! I really don't know what I would do without him sometimes, in many ways it is your brothers that keep me going. Every day they teach me something new. I don't know many 5 year olds that will give up their birthday gifts(although people did bring him some) in order to honor their little brother's memory. I don't know if he really understood what he was really doing but I know he was so excited to do it. We got a bag of donations and some money to send to Comfort Zone to help other kids who have lost family members. Josh can't wait until he is old enough to go!
Once everyone left, I took a shower and just cried over the fact that you were not here today. It was so hard for me on so many levels. I do however know that life goes on and that I will somehow make it through every day until my job is done. It doesn't mean that it will be easy and there will not be a day that doesn't go by where I don't miss you. On so many levels you have changed my life. Asked to do it all again and know what I know now and how hard and terrible it would be to live life after you were gone, I would still tell God I would take you:o) I love you that much and would walk the world for you even though you were here briefly. Please watch over your big brothers they love you and miss you...you are forever in their hearts too.
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