The Chelsey Diaries

The Storm Is Raging.

August 23rd, 2013-Christmas Eve Party
August 24th, 2013-Christmas Day
August 27th, 2013-Canuck Place Children’s Hospice

August 31, 2013…

The air is crisp and calm, the sky clear and endless, like
it always is after a storm. I am thankful Lilee is asleep, not in
any pain. I am thankful she wakes up from time to time, to eat her
favourite things or to tell us she loves us. I’m thankful for the
“dancing in the rain” photos, comments and videos our communities
have sent us. And I’m so very thankful for this House and the
amazing people in it. But I am sad. I am exhausted. My heart is
aching with an indescribable pain. Each night we have been here, I
have fallen asleep with my bed pushed up against Lilee’s as close
as it will go, holding her hand. Any movement, any sound, my eyes
fly open and my hand is on her heart. Up. And down. Up. And down. I
feel her chest move. Thump thump. Thump thump. I feel her heart
beat. The panic subsides, I place her hand back in my hand and I
try to get some sleep. Each night is increasingly worse, knowing
its one day closer, but never knowing how close. Thursday night,
after a day FULL of dancing in the rain by all the people sending
their love to us, thunder and lightening filled our room. Sheets of
rain came steadily down from the open sky and I couldn’t breath.
How poetic, I thought, if she passed tonight. How true to our
story, if the rain storm took her away with it. My brother and
sister in law were the last of the immediate family to see Lilee,
and they were en route from Edmonton as this end of summer storm
raged on. Since we have been here, well.. Since we have noticed
Lilee declining, I have made sure Lilee knew that I was okay. I
have made sure she knew that when SHE wanted to go, when she was
ready, that I would be there and that I would be okay. It was
important for me to make sure that she never held on because she
felt like I needed her to. But last night, through thunder and
lightening I asked Lilee to hold on. I asked her to wait for her
uncle and Aunty to come give her a kiss. I was so afraid and so
panicked that it was her night to go, and they hadn’t gotten to say
goodbye that I sat up in my bed and waited. My heart beating out of
my chest. My breaths short and shallow. 12:30am, The minute her
Aunty and uncle left after giving her a kiss, I laid my head on my
pillow, my eyes began to close as my heart beat softened and my
mind calmed. I finally fell asleep. I am not ready to say goodbye
to my daughter. To my world. But I never will be. I am in the
process of accepting that I don’t have a say, and that in not
accepting it I will rob both Lilee and myself of time I could spend
soaking her up. Taking her into every cell in my body. I am calm.
And I am at peace. She has no pain, and we have had our time. I
have given her the peace of mind to go when she needs to, that she
will never be alone and that Mommy and Daddy will be fine. I am
holding on to every moment, as tightly as I hold onto every tear
behind my eyes. I am taking in every syllable of every word, and
staring into her eyes for as long as they are open. Piece by piece
I am absorbing her essence deep into my soul where it can not
escape, where I can keep it safe until the end of time. We are in
the house that will transition Lilee from earth to heaven. That
will transition me from being a mother of a toddler to a woman with
a broken heart and soul.

I am the calm before the storm.

Chelsey.