Taking a few minutes today to reflect how much has changed in a year. So much has changed. I would have to say mostly it is my perspective. I am still a type A personality but frankly most things don’t matter to me any more. Not to say I don’t care. I care a great deal. I think a care more about things now than I ever did. I care so much that there are days I am incapacitated and can’t get moving because I am so overcome with caring about others that I am consumed by it. I care so much about how others are doing it immobilizes me some days and I know that Daniel’s continuous care is the keeps me going. I wonder what will become of me when Daniel doesn’t need me full time. I wonder how I will use my energy for a beneficial purpose. As much as he doesn’t think he needs me now, he still does. I always told myself after we saw the premature babies in the NICU with Matthew when he was born a few weeks early that when I had time I would go back and hold those babies that no one had time for…well I never did get around to finding that time and now look, once again I don’t have time for anyone else’s babies but mine. My head now swirls with thoughts of other people’s babies and siblings and friends with cancer that need help all while I am still trying to help my own. Once again we have just gotten news of someone close to us that has been struck with news of this terrible disease at a young age and I am spending countless hours sleepless worrying about them. I go to sleep with them on my mind and wake up during the night and in the morning in tears over them. If it is not enough to worry about my own child and the insurmountable problems we are still struggling with, now I am consumed by another families worries. But I know that I cannot intrude on their families time and crisis and need to let them find their way just like we did. It is making me think about how I treated all of our family and friends when Daniel was first diagnosed. Most of it just a blur now, I know that everyone wanted to help and be there for us and know what was happening but all we could do was to try to keep our head above water and survive the first days of information overload alone. Unfortunately those days and weeks turned into months and months and here we are coming up on a year and still feeling like we have cut off our entire line of communication to the outside world. But this has become our safe place. Our bubble if you will. We are still somewhat in isolation to keep us safe from the germs that are so dangerous to Daniel’s compromised immune system, but it has made our entire existence with our family and community so fragile. I hope I didn’t burn any bridges when I cut people off. I know that those who couldn’t understand and weather our storm may not have been strong enough to stick it out with us but I understand. I know how hard it must be to sit by and not be able to help and do nothing, but just understanding that this is how we needed to deal with things was is all that matters. I hope everyone understands that no one can understand a situation such as this until you are in one like it and that I would wish it for no one. But alas, we are in it and continue to try and deal with it. I am trying to start finding my back to a more regular schedule, although it is not going well. I find myself in a daily schedule of caregiver an dnothing more yet. Day by day we will get there and I promise myself that once I am there I will give myself to others. There are so many out there. Other families and children and babies that need holding even. I have learned so much this year and I am so ready to give it to others who need it. I have learned that I know how to help the others who need it I am not sure how I will do this exactly but know that this time I will find the time because I know how meaningful it is and how needed the help is for others. This is something I look forward to being able to do someday.