First let’s get some updates and thank you’s out of the way:

• On the right you will see a new link under “Blogroll” it’s called Bringing Juliette Home and it’s a link to another family with one child with Downs Syndrome (DS) who is looking to adopt another through Reece’s Rainbow. I learned of them through my sister JoAnne who made a donation in Faith’s name to help them reach their goal of saving another angel.
• A story came out on Tuesday about Faith in the NJ Herald. Thank you Eric for a wonderful story about Faith and our community and school. A PDF scan of the article is available NJ Herald Article.
• Thank you to everyone who worked and participated in Wantage Day this year and the fundraisers you ran for our family. I again cannot tell you how much it means to us to know the impact Faith had on everyone and the effort you all have put out for us. A special thanks to Nanci Valente, the special ed director for Sussex-Wantage Schools, who sat as the target of the dunk tank for hours causing long lines for a chance to dunk her.
• On the day of Faith’s death I rolled my ankle during an advised walk outside on “such a beautiful day”. Has not been getting better, just found out from orthopedist that it’s a grade 2 sprain that I should have been on crutches for. Amazing pain killer that adrenaline and shock.

I do really enjoy writing these blogs, I so hate sitting down to write them. It’s my quiet time of the day usually when everyone else is asleep and I have some time to spend alone with Faith. That’s what makes it the hardest, I know it’s going to be close time with Faith which is both painful and comforting.

The day before Faith died was her friend Casey’s birthday, you may remember the card we received from her along with her birthday wish. Casey said she wanted no presents for this birthday (her 9^th), her only wish was to have Faith get well as her gift. I had received the card and posted it proudly on Faith’s door for all to see. It was a terrible week, it had started with Faith’s first cardiac arrest and we were very worried as she had also started dialysis that week. Seeing that card and knowing what a wonderful gift Casey had wished for Faith not only renewed my hope but my faith in all things good.

I don’t remember why but I think it was my turn to stay the night but Sue decided to stay instead, probably because Nina was lonely and looking forward to a drinking buddy. I took the girls home with me, they were out earlier in the day shopping with Mom. Our first stop was to WalMart to print out a picture of Faith & Casey from Faith’s 8^th birthday party. Earlier in the day Sue and the girls had picked out a special picture frame for it that said “Friendship grows with Love”, this would hold the picture of Faith & Casey. Our next stop was the Dollar Store in Franklin, NJ. I bought two balloons, one said “Happy Birthday” the other “You’re So Special”. Upon returning to the car I received the phone call from Sue that Faith was in cardiac arrest and I needed to return to the hospital, back to CHONY in a very fast and illegal way. The next day Faith died and the present remained in my car.

About a week passed and Casey’s Mom contacted me via e-mail, she knew I had the pictures from the birthday party and asked when I could to please send her them as she wanted to get a special frame for Casey so she could keep it in her room. I shared the story with her and asked if it were OK if the family stop by that day as we were going to be out to deliver Casey her belated birthday present. We arrived, gave Casey her present and talked a while with her and Mom. She also presented us with something she had made for us. It said “I Love Faith the Caterpillar”, I took it and thanked her but admittedly did not understand it. Another week had passed and we attended the memorial service they had at Faith’s school where butterflies were released. A day or so later I came across Casey’s gift again and thought to myself what is this with the caterpillar and the butterflies that keep showing up. To Google I went to find a book titled “Max the Happy Caterpillar” a book written to help children deal with death. A quick summary of the story is Max the happy caterpillar doesn’t die instead he turns into a happy butterfly. To this day I still don’t know if this book was ever used to help these children deal with Faith’s death. I do know that one little girl was able to say with one picture what we were all thinking and feeling. While we know that Faith is no longer suffering and is at peace, we would all rather have the Faith we know and love back just the way she was.

As any parent knows it’s a wonderful thing that children grow up in stages. It gives us a chance to learn and catch up with them. I think the hardest part about the death of a child is that natural order is disrupted so abruptly. From the time our children are only a promise of life until they are born we fall in love with them. We never fall out of love with them but the time they grow up we are able to distance ourselves from them to let them go on and live their lives. When that process is short circuited we never have the chance to build that distance, to separate through attrition. I often hear from parents of adult children about all their stuff that still litters the parent’s house. I cannot tell you how much an 8-year-old impacts a home. You cannot find one place in this house that Faith hasn’t touched or left her signature on. From her room, to her things left in every room. She was so woven into our lives it feels as if a part was just ripped out, with cruel reminders left scattered in our lives.

As I finally complete this blog entry a week after starting it, the clock reads 4 weeks since the caterpillar Faith transformed into the butterfly Faith. I to do miss that caterpillar but must be content she is happy as a butterfly.