Hydrangeas and Gaping Holes

Christa Doran Uncategorized 19 Comments

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.

Fundraising Updates:

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. 

Comments 19

  1. Please bring Lea to mexico. It is not the Mexico you hear of in the news, it is a nice area with an exceptionally modern hospital. Boston is not your only hope, but statistically less effective than the IA treatments that directly target and seep into the tumor in Mexico. Do not be afraid that it is in another country, every child seeking treatment there now has had exceptionally positive experiences in the environment. This is saving lives and one child, Braden “buddyBoy” Miller has just gone NED with no evidence of cancer cells as a result of this ground breaking treatment. While this clinical trail could help, it is not going to do what the IA is doing. I am not trying to be harsh, but after following so many DIPG kids for years and seeing the same outcomes this co0mes from a desperate want fro Lea to be like these other kids. https://www.facebook.com/makingDIPGhistory/?ref=ts&fref=ts this page has valuable information and contacts for the treatment and other families there now. Please consider it, you have a wide support group financially. While it is very expensive it is very possible seeing all those that donate and care about Lea in CT and beyond. While yes, some children who sought treatment in mexico didn’t make it, they all had one thing in common: they arrived too late, once the tumor had already progressed. Every child being treated there is far surpassing statistical survival rates. Many do not even appear ill and have been able to stop the nasty steroids. please please consider this option. It is real, it is producing groundbreaking results, and I guarantee once the US finally catches up to reality it will be available here, but DIPG moves far too quickly to wait for this to happen. I may be a stranger, but I am originally from CT and have watched the tragic stories of Nina Poeta and Danni Kemp (also from CT) unfold. Please look into this option. It is really not even that invasive, kids are back playing/walking/eating within a day max, often even a few hours. I hope you read this and see I am coming from a place of real empathy and desire for Lea to beat this disease and understanding that the trials in the US cannot compare. Due to her relatively good clinical disposition (for DIPG standards) it is highly highly likely Lea would be accepted. Please read this. Thinking of your family.

  2. Praying for Lea, you and your family. We moved to West Hartford so I don’t see you, but I think of you and your family often. Sending love and prayers for a successful trial.

  3. Dear Christa, I pray for peace and light for all of you. Breathe, one breath at a time. One hug at a time, one kiss at a time. Know we are all praying, praying, praying for little Miss Lea. Praying for that miracle ❤️

  4. I will always be praying for you and sweet Lea. Your prayers have become my prayers. May you all find the peace of Christ in your hearts, minds and souls.
    With love, Linda ?

  5. We are here. Praying. Bearing witness to the suffering no parent should ever suffer. No words my dear heart. Just silent strength wrapping around you, Mike and the girls, now and always, in the light and in the dark. Prayers of grace. ?

  6. Reading your thoughts my heart breaks. She is sweet Lea and perfect just the way she is. I think of you often and send prayers and hugs. She is surrounded by love. Don’t lose faith. Sally

  7. We don’t know each other, but we have some mutual friends. They shared your blog and I have been following Lea’s story ever since. I told my 5 year old son about her and he is always reminding me to pray for her. We pray for her together.

  8. We love you Christa, Mike, Lea, Liv and Keira. Christa you write the thoughts and feelings we would all have if we were in your place. Thank you for bearing your heart and soul, and trusting them with us and for being so vulnerable. It only makes us love you more. We are still praying and still asking God for this miracle. “Please Lord make yourself gloriously known through the healing of Lea and bring peace to the hearts and minds of her beautiful Mom, Dad, sisters and family.” ❤️

  9. Sweet Lea is heavy on my mind tonight. Through your words, I relived my own child’s congenital disorder, the diagnosis, the tears, the love, the ‘what-ifs?’. I understand you, your heart. Your love or aloha, speaks volumes. Hold tight and breathe. We are all here with you, your silent supporters and prayer warriors. Lea will be kept buried in my heart, as will you, her strong, and loving mother. Godspeed beautiful person.
    Aloha e.

  10. I continue to keep Lea, you and your entire family in my thoughts and prayers. I wish you all much success with this clinical trial.

    Prayerfully

    Sheryl

  11. Praying every day for that miracle. Who is to say it’s not possible. Live in the moment with her as you are. Kiss and hug and do whatever you feel is right. Anything. We are praying hard and strong. God Bless your family. My heart aches with you

  12. Lea is a precious, strong, amazing, beautiful little girl… praying for continued strength for her and all of you as well as a miracle that this disease disappears into thin air never to return. Wishing you peace, love & time.

  13. Christa, I remember you as a young girl and what a blessing your family was at Glorious Gospel.
    My heart is heavy after reading all that Lea and all of you have been going through. Trusting God in this trial and the decisions you as a parent have had to make… I can’t even imagine. But, Phil. 4:6-7 says to not worry about anything, instead pray and He will give you peace beyond our understanding. Praying for your heart and mind to experience that peace and praying for God’s healing touch on Lea’s body. Will continue to pray this daily for your family.

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