The Darkest Night

Christa Doran Uncategorized 82 Comments

Perhaps the butterfly is proof that you can go through a great deal of darkness yet still become something beautiful.

It was even harder than I imagined it would be. It was the day I had been dreading since the told us of her diagnosis in August. It was the day they tell us that this is it. The monster is back. 

I pushed Lea down the long hallway towards the healing garden, grateful she was in a wheelchair and unable to see the tears streaming down my face and my attempt to choke back sobs. The amazing nurse who usually administers her injections walked with me, stroking my shoulder which was bobbing up and down, telling me how sorry she is.

I gave her a hug and sent her away. I wanted to be alone. The rain falls steadily from the gray skies as if the earth was crying with me. Lea is asleep. It has been a long day for everyone and the news of her MRI was worse than we anticipated. My body is trembling as I scream at her in my head. DON’T LEAVE US! As if she has a choice in the matter. 

Her tumor is growing at an alarming rate, even for DIPG. In addition to the tumor in her brainstem, they found a second tumor in the front of her brain. Our days in Boston are done. Another failed trial for this monster of a disease that is taking our children from us. 

Mike is alone in the room with the doctors getting the gory details that debilitate me. Words like hospice are mentioned. And hydrocephalus. And a shunt. And strategies on how to make her the most comfortable in her remaining days. They don’t like putting a timestamp on it, but tell us weeks… maybe a month or two is all we have left with our girl.

 One of my all time favorite pictures of us. October, 2011. (MW Photography)

On the drive home I open my Shutterfly app and order dozens pictures of Lea and our family, back when she was sparkly and filled with joy. Back when I was happy and light, with a skip in my step. I take inventory of my closet to make sure I have a black dress. My mind drifts to her funeral… something no parent should ever have to imagine or endure. 

 Summer 2012

I am so tired. And so scared of what lies ahead of us. Now more than ever.

So this is that one amazing life, huh? 

I used to think that we deserved to be happy in our lives. I now believe the goal of life is live with purpose. To love deeply… even if it means excruciating pain when you lose. To find fulfillment in what you do. To practice being strong, and when you can’t be strong, to be brave. Because one day life might hand you something you cannot fathom, and you are going to have to handle it. 

You can’t always be strong. But you can always be brave.

I am not looking to draw this process out. I am not interested in additional clinical trials, or re-radiation, or anything that prolongs this misery for her. 

I want her here more than anything in the world, but I still pray that when it is time, God will take her peacefully without suffering and give us the grace to handle that. Last night Lea had two seizures in a two hour period. It was petrifying to see her lifeless and unresponsive. Both times I thought, this is it. And then she came back to us and I thought, I am so not ready to say goodbye to her. 

Somedays are harder and more devastating than others. Yesterday was a good day. We laughed and cuddled. She told me I was spectacular. I held her in my arms like I did when she was a baby, and as she slept I wondered how many days like this are left for us. Today I am sick to my stomach and feel like I am being swallowed whole by sorrow and sadness, wishing time would stand still because it would mean she would be with us. 

We are asking for your urgent prayers for Lea. Please pray for God’s mercy, grace, peace and understanding. I don’t understand it all. I am angry and confused and so very devastated. 

We meet with Lea’s doctor at Yale tomorrow to discuss what comes next. 

We continue to see the best in people during the worst of times. People continue to bless us with random acts of kindness that let us know “You are not alone. We have no idea what you are going through but we are here. We got you.”

Thank you for the cake pops and Starbucks gift card which were delivered to us in the waiting room minutes before we got the news. 

Thank you for the hot soup, and Eli’s delivery waiting for us after a 15 hour day and one of the most devastating of our lives. 

Thank you for the beautiful flowers stuffed with gift cards and left on our doorstep.

Thank you for taking Liv and Keira and making life “normal” for them, even if for a few hours. 

I am are grateful for an amazingly strong support network that continues to lift us up. Thank you so much. You make a difference in our lives.

During the darkest nights, the stars shine the brightest. -Christa Doran

 Our joyful girl, 2016. (Christina Rosario Photography)

Comments 82

  1. My heart goes out to you all, especially that sweet girl of yours. I’m wishing for a peaceful journey to the other side for her. I’m so sorry for the hurt you’re all enduring and am sending love and prayers in attempt to ease it.

  2. There are no words to express my deep sorrow for you and your family. Holding you in my heart and wrapping arms of love around you.???

  3. I wish I could offer more than prayers, but you have all of mine just the same. And my Mom’s. And my brother’s.

  4. My heart is broken beyond words for you all. Precious Lia our Lord has you in his watchful care. I continue to offer up my prayers for you all. ????

  5. If only it were in our power to make everything all right. I pray for strength for you and your family, for mercy on all. I pray for Gods love to shine on you and your family, even now when they may not seem possible. ?
    (Keely’s Grandma)

  6. My heart aches for you all. There are no words to express my sympathy. I will continue to lift you in prayer and ask God to wrap Lea with His comfort , and ease during her transition ; every step of the way.
    Natalie Avery

  7. My heart breaks for you, Mike and your family. By far the hardest thing is the sickness and loss of child. I pray for you everyday although my mind can’t grasp the enormity of the situation. Sacred Heart of Jesus I place my Trust in you. May God hold you close in this very difficult time.

  8. My heart is breaking for your family and especially Lea. I will continue to pray for all of you! Your family have touched so many lives. A scripture came to me while reading your blog, Ephesians 6:10-17. Not sure why, but the words that came alive were “to stand”. Verse 13 is what I heard in my heart. I will continue to pray for peace, strength, grace and love over all your lives!

  9. I am so deeply sorry that you are going through this, my hearts breaks for you as,a mom myself, my prayers for your strength are with you and your family. God bless your little Angel.

  10. Praying for you and your family Christa, may the peace of God that surpasses all understanding rest on you and your family at this darkest hour.

  11. Lord how we hate to hear of this, we cannot understand even a tiny amount as to why children go through pure hell. They did nothing to deserve it, they are innocent pawns in a tug of war between the darkness and the light. We know you didn’t give them the struggles but you stand with them and their families as they fight the battles one by one. We cannot understand why they aren’t healed her and allowed to grow up to have families of their own. There are no answers to why they have to be separated from loving family and friends. We cannot fathom that there is no treatment or a fighting chance for a cure after all these years, We ask that you are with this precious family through all of the battle, give them comfort and give them peace that is so hard to find. Lift them up and let them feel the prayers surrounding them. Let them lean on you Lord like never before Father and I ask that you continue to give a miracle for her, we ask it for every child fighting this battle with everything in them and for the families who fight along side them. Amen.

  12. There are no words that I can possibly say that will help you feel better. Please know that I am praying for you and your family. I pray that you are able to have many more times of light and laughter. I pray that peace finds you and your sweet baby girl.
    -Beth

  13. I had a daughter with a brain tumor. They gave her 6 months to live. That was 30 years ago. She survived with the grace of god and help at Mayo Clinic in Rochester MN. They did experimental stereotactic lazer surgery for inoperable tumors. It was never approved by FDA but saved her life. She lives with shunts that have been revised over and over. I don’t know your specifics but maybe worth looking into? It was a Dr. Patrick J. Kelly.
    Lots of prayers for you and strength. Keep putting one foot in front of the other and you will not fall. The bad days take it a day at a time, the horrible one hour at a time, and the totally unbearable……………….one moment at a time. Take care.

  14. If only mere words could make you and Lea better! I only ask that God be with your family each day and provide you with strength and grace as you make your way down the dark corridor – you will get to the light – Lea is so very special and so are you! Sending love and hugs. My heart breaks for you.

  15. I cannot imagine all that you are going through – you are strong and brave, resolute and genuine, and also vulnerable. Sending love and support.

  16. No words. We wish you peace and comfort. You and your family, and especially Lea are a study in grace and gratitude. You have so much to teach us all.

  17. Dear lord, please wrap your loving gentle arms around precious little Lea !!!!! Guide her with much strength before she becomes the most beautiful angel ever. Lots of tight hugs for mommy and daddy to last forever. Prayers for all!!! XOXO

  18. Dear Christa and Mike,
    Our hearts are broken for the grief and sadness you are all going through. We wish we could find the words to describe our feelings, but we pray that God wraps his arms around you all and bathes you in his everlasting love. We pray for Lea, you, Mike and entire family.

    We’ve never had the privilege of meeting Lea, but we fee like we have known her since she was brought into the world and made it a better place.

    God be with you all.???

  19. I pray for a miracle for your precious girl, and I pray for your and Lea’s comfort and peace. If you can, record her sweet voice on your phone. It was the best thing I did. Sending hugs.

  20. Sending love and light! Beautiful expression of a life gone in a direction one would never expect with no reason or explanation! ?

  21. You look at the pictures and in that moment everything looks ok and peaceful and when I read this blog it just breaks my heart for you and your family. I have been following your story and wish in this world there is something anyone of us could do to take this pain away from you..sendinglove, sympathy, and admiration.

  22. Devastating. Sending many, many prayers…. for an amazing, truly brave, and very special little girl. No one should have to go through this… I’m deeply sorry for all that Lea & the family have and continue to endure. May God’s Grace shine upon all of you.

  23. I have been in your shoes, though my daughter pulled through. Seek out parents like you for empathy and coping strategies. You are not alone. There is, simply, nothing worse than what you’re experiencing, but people do care deeply and will help. Way down your road you will find a way to honor your precious Lia. (After my daughter grew up, she told me that she thought I suffered more than she did during her 26-month ordeal at Yale. I don’t know, but you could imagine that, too.)

  24. My heart is heavy. I pray for God to wrap Lea (and all of you) in his arms to comfort you. I pray that HE will give you the strength you need.

    Sending my love and continuing prayers.

  25. Christa,
    I’ve been praying for Lea, you and your whole family. I’m so deeply sorry for this devastating news. I will continue to pray as you have asked. My heart is with you.

    Stephanie (Kara’s friend)

  26. My heart aches for your family and for your beautiful sweet daughter.I wish I could say something profound, something that can make a difference, but there are no words. You’re going through something that is a parent’s worst nightmare. I can only offer you prayers. May God help to see you & your family through what is one of the most painful times you could possibly go through. May he lift you up in your darkest moments. Love and peace to you all.

  27. Dear sweet Christa and family,
    My heart aches for you…
    “Tears are prayers too. They travel to God when we can’t speak.” Psalm 56:8.
    “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” Isaiah 43:2
    Sending you love and prayers,
    Katie & Mike

  28. I am heart broken for you all and for Lea. I continue to pray for you all during this excruciatingly painful time. I cannot imagine how you feel, but I wish you some measure of comfort and strength in the days to come. ~Katelyn (Karin’s friend)

  29. Doran’s
    I live in your community and know some of your friends. May your sheer grace and love continue to sustain all of you. Prayers being sent to your beautiful family.

  30. Holding you all gently in our hearts. May love and light surround you in these your darkest days and may you find the strength to keep walking one day one breath one step at a time.

  31. My heart and prayers for peace and comfort. Lea is an angel in waiting and all prayer warriors will continue to hold your entire family in prayer =(

  32. Prayers for peace for all of you but especially for sweet Lea. Thank you for being so brave and sharing your family’s experience with the world. My heart is with you.

    Shilpa (Tara’s friend)

  33. Having been through this unimaginable loss with my daughter I feel your flood of raw emotions, unanswered questions of why us and unwavering love for your child. Brave is the very definition of a mother’s being while facing the unfathomable. May God wrap you all in is grace and hold you tightly today, tomorrow and forever. ???

  34. I’m so sorry Christa and mike, I am praying that this journey is something that you can endure and I pray that Lea has a peaceful time x

  35. …I just can say… that I love you all so much and we are praying for strength and peace… you are not alone!!!!

  36. The Lord is righteous in all His ways and kind in all His deeds. I’ve prayed that you will be able to trust this truth in all the depth, breadth, and length of every aspect of this overwhelmingly wrenching time. Jesus is here with us, and we will all be there with Him! <3

  37. May God wrap his loving arms around Lea and her family surrounding them with comfort, peace and love. Father God, give Lea and her family strength to endure. ❤️

  38. Christa, Mike and girls,
    Please know that our thoughts and prayers are with you in this terrible time. May the Angels watch over Lea and bring her home gently to our Lord.

  39. I have been praying daily for God ‘s mercy for Lea and family since I heard of this unfathomable test of faith and strength. May our Lord grant all His peace and comfort in living with this tragedy. My deepest regards and prayers for all ❤️

  40. My heart wants to wrap itself around all of you. Christa, you have the strongest muscles and most determined heart I know to carry and hold tight your Lea. Praying for a miracle.

  41. Christ and Mike, our prayers are with you and your family during this traumatic time. Lea is a blessing and has shown us all how to laugh a little harder, to be kind and thoughtful, and to be strong. Whenever I hear Fight Song I think of her and smile. She is an amazing gift to the world.
    Love you,
    Donna

  42. Christa and Mike, our prayers are with you and your family during this traumatic time. Lea is a blessing and has shown us all how to laugh a little harder, to be kind and thoughtful, and to be strong. Whenever I hear Fight Song I think of her and smile. She is an amazing gift to the world.
    Love you,
    Donna

  43. I am sending all the love, prayers and peacefulness that I have in my heart. No parent or child should have to go through this. There are no words. Xoxo

  44. Prayers are being prayed for Lea and your family. While there are no true words of comfort, rejoice in your young daughter’s amazing life and how she has touched so many people. Don’t look in your closet for a black dress, instead when that sad day comes, ask everyone to wear Lea’s favorite color. Celebrate and remember your beautiful little girl.

  45. Christa, you and I don’t know each other…I stumbled across your blog when a friend posted it on her Facebook to share Lea’s story. I know there are no words of comfort and it’s impossible to imagine how hard this is to go through. I’m utterly heartbroken that any family ever has to deal with this.
    Your strength, even your will to TRY and be strong, is inspiring beyond words. I just want you to know this story deeply touched me and makes me want to do all I can to help you and anyone else in this situation. Prayers and hope for peace and resilience for Lea and your family.

  46. We have never had the chance to meet, but we have some mutual friends here in Woodbridge so I have learned of your heartbreaking struggle and now your immeasurable loss and I just wanted to say I am so unbelievably sorry. Please know that the love and support goes beyond your family and friends, but includes people who have never met you too. You have a whole community wrapping its arms around your family and giving you all a giant hug.

  47. I am soo sorry for your loss! I am Ginas mom – Pete’s girlfriend- she told us what happened- and I can’t imagine! Prayers and love are with you and your extended family is all I can say!!

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