Rainbow kids.....

I found this in my wallet again the other day... its been on my mind ever since. At Primary Childrens Layne and I met with a team called the Rainbow Kids team.. other wise known as the palliative care team, This was a group of 5 social workers, nurses, chaplain etc who all met with us in a room to discuss Kael. A meeting no parent should ever have to attend. We talked about Kael, what we knew about his condition and how we would like to have him treated. There were 4 categories, Curative, Comfort and Extend Quality of life and Prolong Dying. Unfortunately with Kaels condition there was nothing to put under the curative section... there was no cure for the illness he had. There were lots of things we could do for the other 3 categories. It was heart wrencing to write down what we thought we should have done should he get another illness, should he stop breathing, what actions would we take what would we do? At this meeting it became very clear to Layne and I what road we were traveling down. They had us write up a POLST form. What our wishes were should something bad happen at home, at the doctor and the hospital.. how were we supposed to make these life altering decisions? Its a day ill never forget. Driving home that night I felt like I was in a daze I still remember the converstaion with Layne I can picture the drive which I knew like the back of my hand and what we talked about driving around each curve. Had we made the right decisions, would we ultimately have to make the final decision? It was so unclear where we went from there, For some reason I cant bring myself to throw that paper away. I folded it back up and stuck it back in my wallet. It for some reason means so much to me. Those 5 people meant so much to me. They seriously must have one of the hardest jobs in the world... meeting with parents of kids who are so sick all of the time and writing out such plans. I seriously look up to them so much!! It takes a special person to be able to do that kind of work. Im grateful that they were there to talk us through such things. That they could help us see it from a different perspective. What they helped us do wasnt easy but they sure helped out alot. At Kaels funeral they even came. To say goodbye to a boy who they helped care for and love, to give us their condolences. How sweet and amazing are they? I wish I could show them how much I appreciate them... they will never know how they changed our lives.. Its been almost 4 years ago that we had that meeting.. it doesnt seem real, it seems just like yesterday. Things can change so quickly! I hope to be able to help someone else as much as they helped us!