Thursday, September 25, 2008

A Very Sad Good-bye

Yesterday we learned that the Jason Program ( is closing it's doors. The Jason Program is the only one of it's kind. They help families with critically ill children live as normally as possible. They have lost their funding and were unable to find a new sponsor to help with their operations cost.

They have a wonderful nurse, Greg, and social worker, Shelly, and doctor, Dr. Gary, who travel the state (the whole state) visiting families in their homes, making sure that the needs of the sick child are met along with the emotional well being of the rest of the family. I have spent many days in my living room visiting with them and venting my frustrations, my worries, my sadness and even my joys over having a terminally ill child.

Even after Savannah died they would check up on our family and make sure we were doing ok. They still visited us in our home and Kiara at school. One day shortly after the funeral Greg sat in my living room and I was sharing with him my sorrow over people not mentioning Savannah because they thought it would be too painful for me. Or how some would seem uncomfortable when I would mention her; like talking about a child who had died was taboo. He promised me that he would always talk to me about my daughter.

Greg and Shelly came up for one final visit today. It was sad for our family to have to say good-bye, they will always hold a special place in our hearts.

Wednesday, September 24, 2008

One of many firsts

Every September Papa Jon and Nanny rent a cottage on Popham Beach. We all go for a day and spend it with the rest of the extended family. We eat, walk the beach, eat, play games, play in the water, walk the beach, oh yeah, and eat!

Every year we always do a family picture on the beach. (Another one of Savannah's requests is that Lady, her bear, take her place in all family pictures.)

At first I didn't want to go; Savannah loved going to Popham. She would play in the water, run on the beach and write LOVE in the sand about every 5 feet. I knew this would be a hard "first" for us.

Kiara and Donovan had a great time. They would run from the waves, screaming all the way. Donovan would stand just far enough away and shake his bottom at the waves (teasing them, I suppose). Kiara actually got wet this year, usually the water is too cold. Because of the hurricane that weekend the water was warmer.

Kiara and Daddy wrote a message in the sand for Savannah. Just as they finished it a wave came and took it out to the ocean. Kiara decided that it was taking it to Savannah.

Auntie Gail went on a walk with us. Errol, her husband, died just a short while before Savannah also of cancer. He loved to walk the beach too.

The waves were extremely high also due to the hurricane. They came up over where high tide usually stops. It was a little scary with the kids near the water but great for taking pictures. I think I took somewhere around 300, just of the water. Many more of the kids.

Backing up-Planting flowers

On September 1st, one month after Savannah died, we took Kiara and Donovan to the cemetery to plant flowers for her. One of the many requests Savannah made before she died.

We planted 6 pink tulips, 6 pink hyacinths, and 2 pink lilies.

Kiara and Donovan loved digging in the dirt and planting something pretty for Savannah. She loved pretty pink things. They were very proud of the work they had done. They even wanted to go back the next day to see if anything had grown yet.

One of Savannah's crowns is stuck in the dirt at the head of the grave. The ribbons say "Princess Savannah" and "Princess is home." These are our markers until we can afford to by her headstone.

The Sunday after the funeral Donovan left Savannah a little lizard. He was always moving it around on the grave, he just couldn't find the perfect spot for it. One day when we went there I could tell that something was bothering him about the lizard, I asked him if he wanted to take it home and he said "YES", I told him it was fine. When we brought it home he wanted to paint it pink. We found some pink spray paint and painted it. He then wanted to bring it back to Savannah. Apparently he really just wanted to have it pink for her. Every time we go to visit he makes sure that it is still in the same spot where he left it (he hasn't moved it once since we brought it back).

Finally Started!!

Ok, since people have been hounding asking me to start a blog, here goes. I have put it off because I have always had Savannah's carepage (, site name PrincessSavannah) to keep people updated with how the Hurley's are doing. Since Savannah's passing I have not posted there much. We will be closing it soon, since we are having it published into a book, and we want it to represent that part of our lives.

There may be some duplications between there and here for a little while until I do close it.

I hope you enjoy!