Unintentionally, I have been thinking of where Elle was this same time last year. We were just preparing her for transplant, she was playful and smiling...and hurting. She needed me near at this point and I am so glad I could be there for her. This first year without her is obviously hard, but it is sneaky too. Having never had a loss like this, I am sometimes taken by surprise at how I am OK then NOT, or how it gets harder instead of easier. It helps to talk to veterans who have lost a beloved child a few years ago or more. Steve and I see a grief counsellor and occasionally attend Compassionate Friends. We also are usually able to support each other well.
I recently obtained Elle's photos from last September taken by Blair's Tree of Hope (BTOH). I want to be able to enjoy memories and photos of her, but viewing her photos threw me into a sad, dark place for the rest of the night...I am much better today however, and smiled looking back on August 20 and 31, 2010 blog posts. I refuse to lock her away in the back of my mind or in a hope chest that I can't open. I will just "pace" myself and take it one day, one memory, one photo at a time.
I marvel at parents (and grandparents -yes you Leah's Nana) of EB angels who are able to jump into helping and supporting others so well. I want to get there too.
I will become more involved in the EB community as I am emotionally ready. I am on pins and needles for little Tripp. right now and praying for him. There is one local JEB sweetie who I would drop anything to help in any way, but the parents are doing a fabulous job with her and do have much support. I look forward to future visits with the little one. Also, we were blessed to be able to visit Daylon in So Cal in July for his 2nd! Birthday! Later, Steve and I would like to do more for others though.
|Chloe's four-year portrait...I know, who is this young lady where my little tot used to be?!|