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?! |
I think about you guys a lot and I've been horrible at writing and calling, but I do want you to know that we love and miss you. I wish we lived closer so we could do more together. I'm so glad/grateful that you guys made it down for Daylon's birthday. It was so nice to visit. I can only imagine how hard things must be for you all, but we will pray that you will be comforted. Talk to you soon!
ReplyDeleteJennifer
ps-did I ever send you those photos from Elle's funeral?
Thank you for updating. I think about you all the time and still go back and read many of the posts from last year and I still cry when looking at her last look at the world pictures on the 11/5 post. Although I only know Elle through the blog, she touched a spot in my heart. I don't know if it is her incredible eyes or that beautiful smile, but she just carved out a spot in my heart. I can't pretend to have any idea of you went through or are going through, but know that she touched many people out there in her short life.
ReplyDeleteIt was nice to read this today as I think about you and your family often. Elle was a special girl and changed my life for the better. She made me a better person. I wish I could take your pain away, just know your story impacted a lot of lives. I will forever be thankful.
ReplyDeleteSo nice to hear from you on the blog. I hope it gives you comfort to know that there are those of us who are NOT in the EB community that remember Elle.
ReplyDeleteThere are no words and therefore only prayers.
Kim
I was wondering how you have been holding up. Do you ever wonder if the hole in your heart will ever close all the way? I do everyday.
ReplyDeleteWe still miss Leah so much and I know you miss Elle too. Your daughter will always be with us. We will never forget that beautiful smile of hers. I miss her too. Please take care guys, you are always in my prayers. Love and Peace Leah's Nana
I knew Elle through your blog as well. Take your journey in grief as you need to. Elle will always be with you and us. You, Edlings, Ringgold's, Roth's and Williams are leading a troop of us to help find a cure for this horrible disease. God Bless. Holly in ND
ReplyDeleteThinking of you and sweet baby Elle.
ReplyDeleteI am just learning of Baby Elle.....because of the wonderful Christie Zinc. I am from Louisiana...just 35 minutes from Ponchatoula, LA. I visited Baby Tripp today and have had a long emotionally charged day. Now, I am sitting at my computer reading and learning more about all of the EB babies in the world. I am sorry about your loss and it breaks my heart. I have been forever changed as a result of Tripp's passing and I now fight to help find a cure for EB in any way that I can...every day. Thank you for blogging. I know it's hard when sometimes you just don't feel like it.
ReplyDelete