Denial. Devastation. Desperation. Determination.
Denial:
Two weeks ago Andrew and I walked out of Children’s Hospital, Our daughter by our side, with shattered hearts and racing minds.
This can’t be happening. It can’t be tumor again. Not her. Not us. We’re the 10%. We’re the miracle.
This can’t be happening.
An unstoppable flow of tears accompanied us on the seemingly long drive home.
Devastation:
Silence followed the tears. A lot of it. We sat in my living room. Trying to eat dinner. Trying to play with Lilee. Trying to comprehend.
Laying in bed that night, all I could think was how I don’t want to be in a world where she doesn’t exist.
Desperation:
What now, We’ll do anything. There has to be a way, there has to be something.
Hours and hours spent on the computer.. Mexico? China?
Down on hands and knees.. Praying. Begging.
Determination.
Take a deep breath…
Get her chart
Get second opinions
Find open clinical trials.
And, most importantly, with love, strength, and urgency, LIVE.
Death surrounds us. Especially in this cancer community we have unfortunately become a part of.
We cant avoid death, we will all eventually die. But we can stand against it and fight the inevitable. And the only way to do that is to truly live.
Our determination is not only to exhaust every single option, but to live each and every moment to its capacity.
Faith will be tested.
Hope will be sought after.. But not always present.
Sleep will be limited
And many many tears will be shed.
But we will never give up on her.
We will smile when she smiles
Laugh when she laughs,
Hug, kiss, cuddle, play and sing every single day.
“Whether it’s the best of times, or the worst of times, it’s the only time we’ve got.”
And we are going to use every second of every minute of every hour of every day whether its weeks months or years we have left to make this the best life Lilee-Jean can have.
With love and determination,
Chelsey xo
at a loss for words….. always with you and Lilee…
-All my love-
Thinking of you. I cant imagine. Hug lilee lots, hug each other even more. Take time as a family but also take your own down time.
I cannot even begin to imagine what you are going through. The strength and determination that you have shown Chelsey is truly inspirational. LJ is always in my thoughts and prayers. She is a tough little girl.
It hurt my heart so much to read this post. This is not something that parents and their children should ever have to face or endure, but sadly some are living it. I wish the very, very, VERY best for Lilee and all of you. <3
Eloquently expressed, Chelsea. “Heartbreaking” doesn’t begin to describe the latest turn of events, but I am so glad to see “determination” in your “Four D” post. Sending heartfelt love to you, Andrew and Lilee-Jean.
Stay strong and cherish every day. Every day is a miracle! In my prayers….
Determination! God can provide a miracle. Your family have been in my prayers for many months. Lilee is a miracle, a blessing, her story has touched thousands… May LJ’s miracle of her healing come forth! In Jesus’ name.
Thank you for sharing a glimpse of your heart with us. You’re strength is an inspiration. You’re words have touched me deeply.
lilee couldn’t have a stronger set of parents behind her every step. kudos and prayers.
Stay strong. Keep your faith. You are inspirations to us all. Many positive thoughts heading your way. Believe.
I think you are the strongest mother, woman, writer. I want you to know that we are all praying for you.
LIVE LILEE LIVE!!!!! I am storming the heavens for prayers for you and your family, please know that each day we share with one another is simply a gift, enjoy every day…..blessings always, Paula Marconato mom to Marko Marconato osteo patient at BCCH