Wednesday, June 2, 2010

What a Celebration!

On Saturday, May 29th, we celebrated Bella's first birthday in style. We were surrounded by "the Three F's" as I like to call them: our Friends, our Family, and our Faith community. We threw the party at our church fellowship hall and the food, cake, and fun was enjoyed by all, especially Bella!

We had the outdoor playground open for the bigger kids, the nursery open for the younger kids, soccer balls out on the lawn, and slide shows and video montages of the past year running in the main hall for all to enjoy, no matter what their age.

There was just so much JOY present. It was awesome.

Living through a year of Epidermolyis Bullosa has been the most challenging and rewarding experience to date. It has amplified everything in life. I don't take ANYTHING for granted anymore. The love felt from everyone on Saturday was so wonderful. We go to Minnesota filled with love and support from everyone around us. What a great feeling. Even the guys I play Sunday afternoon soccer with are praying for us.

In other news, PLEASE check out this month's Featured Partner! It's DebRA!!!! YAY! We are so excited to continue to return the favor by raising some more money for them this month. They have been so good to us since day 1, and last month, not only did we raise enough money to donate 100 books to their New Family Boxes, but we raised several hundred dollars over and above what was needed for the book drive! Well, let's keep it comin' this month!

We are sad that we are going to miss the Patient Care Conference DebRA is holding in Cincinnati this month. It's the first week/weekend we arrive in MN. That would be a little too much to bite off. It wouldn't be so bad except it is only held once every other year, so we are sad we will have to wait 2 YEARS to meet our community face to face at last.

Meanwhile at home, we continue to prepare for next week's pilgrimage to MN. I can't believe by this time next week, I'll be in Salt Lake City driving the minivan alone MN. There is still a fair amount to do, but we're getting a lot done every day. Thanks to my parents for coming out from CO to participate in the party and help here at the condo. Just watching the kids play while I run around banging out honey-do's is such a help.

I will close by asking you to comment on this post. Each family that has gone through the BMT has communicated in their own style on their blogs and have shared a different angle or view of the journey. We are asking you to tell us, "What aspects of the BMT journey would you like to read about specifically?" Please tell us. We plan to be a clearing house of information and inspiration throughout this journey. SO many gave so much to us through the web in our first days, weeks, and months, now it's our turn. So, PLEASE, comment.



  1. There's nothing specific I can think of that I'd like you to share, but I know you will do an amazing job of journaling your experience. I'm praying for sweet Bella and that all of your (plural) dreams will come true. May God give you inexpliacable peace as you walk this road. PRAYING.

  2. Well...since I need to know everything, I'd like to see you blog about each of the steps and procedures that Bella, Ali, Ang and you, have to go through. I'd also like to hear how you are all doing emotionally and what support back home you may need. I don't ask for much! Sending all my happy thoughts with you guys and can't wait to see you on the 28th in MN. JT

  3. I am a special education teacher in CA and home school the most adorable 4 year old who has EB...she is an inspiration to me each and every day! Last week I began taking her to preschool (first time EVER away from Mom) exciting...we set out with trepidation for "circle time" at her new school...very scary, but soooo exciting! Getting off the bus should have been the "funnest" time, but as I was walking around to get her hand to go down the stairs, I slipped into the driver's compartment and fell....SHE fell down the stairs...head first!! OMG...her poor little hands and knees were a bloody mess (they had been unbandaged especially for that day)...we have made that same ride twice since and she is still afraid, but each day better...

    I look forward to reading your posts about Bella and her surgery...may God bless...STAY STRONG!

  4. Dawn Battese Canberra Australia,hi Tim and family, may not remember me,knew you when you were but a lad in CT and a friend of your Mums. Have been following Bella's progress and just want you to know you are all in our prayers especially over the next few weeks.Ali and Bella so beautiful,you are doing a great job!! love to all,Dawn Battese