Bella's Blessings - a contribution from Tim xx

I woke up today to an email from a wonderful man I've met through this journey named Tim. I happened upon his blog in the search for participants, followed and in my spare time I have been reading my way through the road he and his little family has travelled. Suffice to say there have been many attempts at getting through it - there have been many tears (from me!)

Tim's second daughter was born with EB - a rare, fatal skin disease known as Epidermolysis Bullosa. Looking at the photo's of Bella you can see she was so full of life despite her illness. Tim has written a book "Bella's Blessings" and has allowed me to use a portion of the book in mine. For this I am extremely grateful, his support for my project means alot to me. On a very positive note, he and his gorgeous wife have just welcomed another addition to their family - a beautiful little boy, Julian - CONGRATS GUYS!

I strongly suggest you drop by Tim's blog and have a read. I've discovered one of those rare and precious people who are just so full of goodness that you wonder why they were put through such hell.. Tim and his family have taken what life has thrown at them and done beautiful things. Sharing his little Bella with the world through his blog and his book is just one of them. Here is a little family that upon getting to know them, you wish them nothing but love, light and good fortune.


Here is a small section of what Tim has given me:


"Dennis soon left, and Ang’s mom came to the hospital after hearing the news. Before Carolyn arrived, we had a few minutes alone together. We both tried to remain strong and focused. However, the nine hundred pound gorilla in the room made that difficult. I know that I buried my sadness as deep as I could. I tend to wear my emotions on my sleeve, and I really didn’t want to show it this time. I thought, “I better remain busy.” So, I told Angelique that I would head back to the NICU to be with Bella once her mom came up.


Before heading to the NICU, I went out to the car to get our bags. On my way to the parking garage, I let out one, loud, concentrated scream. I usually suppress my anger, but in that moment I was just so mad at the Universe for what had just transpired that I gave myself permission to “get it out.” Why me? Why us? Why Bella? Then, I got my shit back together. I realized that I didn’t have time to feel sorry for any of us. I had a ton of calls to make, I had to get the bags back to the room, get over to the NICU, then get back to my wife. None of that would be any easier feeling like a victim. Playing the victim would just sap whatever strength I had left in me.


That may sound noble and all, but I felt so far in over my head that I had to just stick to what was right in front of my nose. I couldn’t comprehend the implications of EB, heck – I had never even heard of it until that very evening. I just had to literally keep putting one foot in front of another. Through most of the first week, I couldn’t think past two hours into the future. Meals were totally out of my mental ability to plan for. Thank GOD Ali was in such good hands with Grandma and Grandpa. My cognitive capability was crippled, and coupled with virtually no sleep, this made for some tough times between the ears."

Bella - didn't she shine :)