Disclosure: This blog was written from a time when I “go dark” as I call it. A time where it is hard for me to find joy and happiness and sorrow seems to swallow me whole. Some stories are shared from a place of joy and light, but this post is not one of them.
When we moved into our home five years ago we planted a hydrangea near the front entry way. Lea was only one at the time, and just like her, this plant was small and hadn’t yet come into its own.
I pulled out of the driveway the other day and my head turned just enough to get a glimpse of this same plant, now over grown and taking over the front walkway. I thought about how bright and vibrant the flowers were at the beginning of the summer, just like Lea. The sun hadn’t scorched and wilted it’s beautiful blue petals yet. It was perfect. Just like Lea then.
It is hard for me to look back to the summer photos, taken just a few short months ago, and see our beautiful girl, still healthy and free from this monster.
I hate that I can’t remember her this way. I wish I could see the sparkle in her eyes and experience her joy and light, even for just one more day.
On the Friday after we returned home from our amazing time in Naples, I opened Facebook and saw the post that shattered my soul and sent me spiraling downward. When we found out about Lea’s condition, my close friend and neighbor told us about a six year old boy from Framingham, MA named Devin who has the same thing and lives next to her sister. Devin brought his community together, raised as much awareness as they did money, and using the hashtag #whynotdevin turned the town his signature green, after the superhero the Green Lantern. Devin’s mom and I exchanged heartfelt Facebook messages, sharing the same awful nightmare, only hers had been going on seven months longer than mine. Like everyone else, I wanted Devin to make it. But not just for Devin, but for Lea as well. That Friday Devin died, just ten short months after his DIPG diagnosis. This news was the jolt that brought me out of my vacation fantasy back to the reality of what we are facing. I quickly count the months on my fingers… if I go back to when we saw a change in Lea, I count almost four. How many do we have left? I feel like time is slipping through my fingers and I wish I could make it stand still.
My eyes have been filled with tears most of the days since that Friday. I cling to Lea and can’t hug, kiss or smell her enough, demanding hourly “snuggly with my buggly” as I call it.
I have been having trouble falling back to sleep after her mid-night bathroom runs. Many times my thoughts drift to a place my nightmares used to be made of… her funeral. I decide I don’t want any part of it. Not for me or anyone else. No one wants to attend a funeral for a child.
I feel petrified about starting this clinical trial, which is coming soon. It is our only hope, so what if it doesn’t work… just like all the others that have come before it. I am scared that we have no idea what it will do to Lea, what side effects it will cause, what effect it will have on her.
If her balance or gait seems to be off one day, I instantly think the tumor is growing. She seems to be staying the same, no improvement day to day but some days seems worse and I fear what this means for her… for us.
I already miss her and she is right next to me. I feel like there will be a gaping hole in my heart forever… the hole is the place where Lea’s light and joy once occupied. I don’t know how I will go on without her. I think I don’t want to live the rest of my years without her… but there is nothing I can do to stop what is going to happen.
Tonight is Halloween and the start of the “holidays” which brings up a host of emotions. Mike and I wonder if this will be her last Halloween…Thanksgiving… Christmas. And will she even make it to Easter, or her seventh birthday on May 25?
I lace up her bright purple sneakers every day and wonder if this is the last pair I will ever buy for her. The still look brand new as she is not running, skipping, scooting, climbing and riding as six year olds should.
There are moments I still have a hard time believing that this is real, that this is happening to my child. A child I grew in my body, birthed without any medication (as it was best for her), fed her from my body for the recommend 18 months (as it was best for her), fed her only the best organic food I could find, washed her soft baby skin only with organic soap, made certain she was always buckled in the right way, her monster helmet securely fastened.
Life is fragile. You can do everything right and still lose. I tell Lea often how blessed I am to be her mom. I never wish she wasn’t my kid. She has impacted my life in a way no one else has and is teaching us all so much about life and what is important in it.
We have started a Facebook Page for Lea. You can follow that here.
We have been overwhelmed by the love and support from our friends in the community. The OWL Fundraiser at the Connecticut Children’s Museum, Moana Fundraiser at Cold Spring School and Flair For Hair Cut-For-A-Cure was a huge success and we are so very grateful for the kindness and generosity this community has shown us. Thank you so much. At this time we have all the resources we need because of your kindness and generosity.
We currently have one fundraiser left and it is a 5K run on November 12. You can learn more and register here.
For Our Prayer Warriors:
Last night I couldn’t sleep. I knew there was one of you warriors praying for me and then I heard it. “I will never leave you or forsake you.” Thank you for your prayers.
Continue to pray for miracle. That Lea’s tumor shrinks and never returns.
Please pray for Lea as she enters the clinical trial. Pray that she is the first of many children to be cured from this monster. Pray for wisdom and guidance from her physicians. Pray for little to no side effects and a positive response.
Pray that we will be able to find peace and hope in Christ, regardless of the outcome. I know He loves her even more than we do, but I am having trouble not being selfish. I want her on this Earth with us now. I don’t want to have to live my life without her or wait until Heaven to see her again if that is what will be.
Pray for patience with our other two children, who need us even more now, but we feel as if we have so much less to give.