A year without Elle

                                                                              

Hard to believe little girl has been gone a whole year.  She has been gone longer than she was alive - for over a month actually. It is weird, unreal even.  In many ways it feels like yesterday. We love her so much as many others do.  We miss her; our longing for her burns, but we are so, so grateful that we are her parents.

Stefan (Steve), Chloe, and I honored Elle's memory today in a couple of ways and the day was sunny and cool and beautiful.  Perfect. 

We woke up leisurely and I made scrambled eggs and butterfly shaped pancakes with apricot syrup- yum. We looked at a few pictures of her and then went to Capitol Nursery to choose a tree to plant.  A SUPER helpful tree expert, Dave helped us to choose the perfect tree.  We spent nearly 2 hours choosing just the right one. In the end, we chose one that looks pretty on this day with red fall leaves and has a beautiful lavender/pink bloom in the summer. It is small, delicate looking, graceful, balanced, but strong; just like our Elizabeth.



Steve and Chloe digging a hole for the tree



                                                                            

Later, we went to Elle's grave and released a dozen gorgeous Monarchs.  All flew away gracefully except for one that took a shine to Chloe.  The last butterfly lingered on her finger and even let her kiss it.  Chloe was as gentle with this butterfly as she was with her own sister!  It too, finally floated away. It was lovely!



Already dark when I remembered to photograph Elle's tree!



Later we had a nice Thai lunch, watched a compilation of home movies and photos of Elle, and  lit her special candle. Of course we cried too, but over all, it was a perfect way to spend Elle's Heaven Birthday, as Chloe calls it. (Tonight she said "On November fourth, Elle died and went to her big birthday party in Heaven" -cool, huh).

I read this today too but I don't know the author:

Where I have gone I am not so small
My soul is as wide as the world is tall.
I have gone to answer the call, the call
Of the one who takes care of us all.
Wherever you look, you will find me there-
In the heart of a rose,
In the heart of a prayer.
On butterflies' wings, on wings of my own,
To you I'm gone,
But I'm never alone-
I am home

Thank you to everyone who loves Elle and has supported us today and always.  We received thoughtful, loving messages today.  Lightens our hearts knowing that Elle is still so ALIVE in all of us...

God Bless

August 22, 2011 -Looking Back

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?!

Missing My Baby 118 days later

It is 11PM.  I was expecting that by now, it would be getting better.  It is still so heavy.  Sometimes I feel torn between this world and the next; wanting to be a mother, wife, nurse, daughter, and member of the community here. Part of me wants to meet my sweetie in heaven. In our Thursday group, one of the parents shared a poem that is so fitting for our family too.

The Broken Chain

We little knew that day,
God was going to call your name.
In life we loved you dearly,
In death, we do the same.

It broke our hearts to lose you.
You did not go alone.
For part of us went with you,
The day God called you home.

You left us beautiful memories,
Your love is still our guide.
And although we cannot see you,
You are always at our side.

Our family chain is broken,
And nothing seems the same,
But as God calls us one by one,
The chain will link again.

Author - Ron Tranmer

On this very day 1 year ago, with my cousin

Before bathtime hurt very much, she loved having her hair washed



March 2010, 3 months old

 Most of the time I function, enjoy Chloe, work, live, laugh even.  We are managing fine, and learning a new way of living and loving.  I know she is OK now in paradise, not in pain, and I am grateful for all of that...I just miss my baby girl.