Days

Christa Doran Uncategorized 97 Comments

There are times in life when the highest honor, the greatest love is paid to another by simply bearing witness to his or her experience. Bearing witness is largely nonverbal. It is the choice to give the gift of a pure expression of love and respect — being a compassionate observer to the unfolding of another person’s life or a particular moment or event. 

When we bear witness, we lovingly give our attention to the other without judgment. We comfort without smothering. We play a supporting role — powerfully upholding the other starring in his or her life. It is not about us. It is about them. Yet, we make a profound decision when we do not try to fix their pain and suffering or share in their experience by telling how we had a similar experience. Bearing witness says, “You are not alone. I see you. I witness what you are experiencing. What you are experiencing matters to me. I surround you with my love.” -Judith Johnson

From the looks of it, today is a beautiful day. The sun is shining. The air is warm. New life is sprouting up all around us… and all I feel is darkness, sadness, anger, grief, and a whole lot of nausea. 

This time last year I was planning Lea’s six birthday party. A day to celebrate her life. 

This year, we are planning her funeral and figuring out how to navigate her last days with us.

This week was filled with things my nightmares used to be made of. We figure out the funeral home we want to use. We sign a DNR. We meet with the pediatric hospice team. We figure out how to make Lea the most comfortable so she can die peacefully, without pain. They call this “end of life care.” 

When I think about “end-of-life care”” I think about someone who actually had a chance to live. Their face  weathered, worn and wrinkled from time spent laughing, smiling and crying. Their hair white from the aging process. Their stories rich from life experience and the wisdom and knowledge they gained from time spent on this earth. 

It crushes me every time I see her former classmates skipping into school, excited for the summer to arrive, the pool, summer camp, vacation, and moving up to the next grade. It crushes me every time every time I get an invitation to another seven year old birthday celebration. I don’t think Lea will make it to her seventh birthday on May 25.

People tell me “I can imagine…” I assure you, this is far worse than anything you can imagine. Watching your child slowly die in front of you with absolutely no way to save them is a form of sick and twisted torture.

As a result of her rapidly growing DIPG tumor, the cerebrospinal fluid in Lea’s brain has no way to exit causing increased pressure, or hydrocephalus. This is causing her headaches, seizures, vomiting and nosebleeds at various times throughout the day, and will eventually be her cause of death. At the advice of our team of incredible doctors, we have decided not to intervene and let this run it’s course as it is the quickest and least painful for her. We have morphine and Ativan on hand, and the hospice team starts tomorrow. 

I have decided not to sugar coat any part of this journey in my hopes to raise awareness, and in turn, research dollars, for this horrific disease. It also is therapeutic for me to get it all out there, in it’s rarest and truest form. I am not ok. We are not ok. And that is ok.

There are days when I experience the gut wrenching, soul shattering, heartbreaking feelings worse than others. There are days when I feel numb, not caring about much. There are days when I feel stronger and able to handle this, process it, and believe that we will be ok. Then there are the hardest days, when I want the world to end because it feels as if mine already is. 

This morning, right after a seizure, Lea told Mike she felt like she was dying. We talked a lot about cancer, death, and heaven today. Lea is grateful that there are no shots in heaven, but maybe there is candy. I believe she knows what is happening to her, and this is her way of telling us that. 

I am asking you to allow us to say goodbye, and not intervene or question our decisions. We don’t need a diet to try, or an experimental treatment suggestion, the name of this doctor, or that clinic. If there was something out there that actually worked for DIPG, we would know about it. We have made the decision we feel is right for Lea and our family based on our own research and the advice from an incredible team we trust implicitly. 

Thank you for providing more ice cream than we can fit in our freezer, more flowers than we have counter space, and more food than we have room in our refrigerator. Thank you for the bottles of wine, soft stuffed animals, generous gift cards and kind words of prayer and support. You continue to bless us and blow us away by your love and support for our family and we are so grateful for you.  

Anyone can show up when you are happy. But the ones who stay by your side when your heart falls apart. They are your true friends. -Brigitte Nicole

I believe in miracles, and I believe in the power of prayer. Please continue to pray for grace, mercy, peace and understanding. 

 

Comments 97

  1. My heart is breaking for you and your family. I am continually praying throughout the day for Gods Supernatural touch, For wisdom, comfort, Mercy, above all Mercy.
    I have shared your story with everyone I know and there are people praying everywhere. Thank you for being completely vulnerable and transparent as you go through this incredible pain. My sister and I spent an entire hour today talking about you and precious little Lea and your family and talking to God on your behalf as well. You are daily in our thoughts and prayers.
    The Ryans and Shishmanians

  2. you are all in my daily prayers. i start each day, and end each day, by asking God to hold Lea close in love.
    ❤️?

  3. From Winnie the Pooh “If ever there is tomorrow when we’re not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. but the most important thing is, even if we’re apart.. I’ll always be with you.”
    (A.A. Milne)
    Sending you all prayers.

  4. God, as Mary stood at the foot of the cross, we come before you with broken hearts and tearful eyes. Keep us mindful that you know our pain, and free us to see your resurrection power already at work in Lea’s life. In your time, raise us from our grief as you are raising Lea to eternal life; through Jesus Christ our Savior. Amen.

  5. You all are constantly on my mind, heart, and my in my prayers. Over the years as I’ve seen your posts about your precious girls, I’ve fallen in love with how talented, brave, and beautiful they are. Getting to know Lea through your posts has been one of the greatest joys. She is an incredibly sweet soul. God shines so brightly through her. Sending you so much love!

  6. Christa and Mike…
    We are praying with and for you all. Please know we support you 100% in these excruciating, heart-breaking and, yes, sacred decisions you are making for your prescious child, Lea, and your whole family
    God be with you…
    With love,
    Barbara and Dexter

  7. Peace, love, and much strength to you and all your family. There are no words, many prayers ???????

  8. As you have said many times over the course of this blog, there is nothing that anyone, espessially a stranger, can say that could offer any comfort or make any of this make sense. I know that.

    However, I do want you and your family to know, that even as an outsider, I do see you and I see how screwed up and sickingly unfair all of this is, to all of you, but so much so to Lea.

    I will never understand or accept a world where something so terrible could happen to someone so small. I hate it for her. I hate it for you. I hate it for your entire family and any other kid who is forced to go through something so terrible and ugly.

    I don’t know if there is a heaven, but if there is, I’m sure it is completely full up with candy. The good kind of candy too, not the gross stuff like candy corn and sweet tarts. I hope when the time comes your sweet daughter gets her fill.

    With love.

  9. Prayers for Lea and your family. I do not understand what you are experiencing, but I surround you with love.

  10. My sweet friend. You brought the most beautiful soul into the world and I’m so thankful you shared this journey, however sad the ending, with us. Thank you. Love you.

  11. You are the second “family I do not know” whose devastating DIPG story I have followed. You have asked for my prayers so I will pray for you all.

  12. My heart is full of love, grace and peace for you all, especially sweet Lea. I do believe they know what is happening to them and that your faith, bravery, love and support as a family is what helps her cope.

  13. Dear Christa and Mike,
    Although I haven’t seen you in far too long I want you to know I am thinking of you and praying for you every day. I am heartbroken for the two of you and your family. I wish you peace and love as you face the unimaginable.

  14. I am a cousin of Megan…I am just so sorry. Just so very sorry.
    If you feel like reading something uplofting, but also very honest about mercy (and grace and love), try my dear friend’s site MercyMatters.net. She is a gifted writer and has helped so many through hard times. We will be praying for you in Jacksonville, FL.

  15. Praying with all my might that Lea be as comfortable and peaceful as possible. I also pray that your entire family experience the peace Jesus desires for you. xo

  16. Praying for you all, lea is beautiful little girl, with very brave loving parents, i deeply sorry for all you have been through.

  17. No, I cannot imagine, but I do bear witness. I pray continuously for God to bring peace into your life, and to hold Lea close ?

  18. “Incredibly strong” is a phrase that comes to mind each time I’ve read your blog. Lea, You, Mike and the girls are in a real life nightmare. Wishing you the days and nights ahead peace, trust, respect and heartfelt blessings to surround and support you forever??????

  19. I am so moved by your open heart and honesty. Thank you for sharing- both your good days & bad. Sending love to you all.

  20. Just read this sad story…..My heart breaks for this family….Things in my life are trivial compared to what this family is going through….All I can do is pray ?????.

  21. Thank you for sharing your journey with us and trusting us. I am holding you, Lea and your family very close to my heart. I’m so sorry that this is happening.

  22. I will walk in the Race for Hope in Washington DC on Sunday in honor of my 7-yr old son, and Lea, and all of those facing this ugliness. We’re raising money for the National Brain Tumor Society and Accelerate Brain Cancer Cure. My son and I will also speak to our legislators on Tuesday to advocate for the brain tumor community. The stories of our incredible warriors will not be sugar-coated and will fuel the fire in our hearts to advocate for what is necessary and deserved. No one should face your current reality, no one should be okay with it. It IS okay that you’re not okay. I’m praying for Lea and your family.

  23. We have no words….please know the hope and peace we pray for you as well as comfort for all of you. We are thinking of you every day, and mourning the power of the monster.

  24. I wish there was something I could say to comfort you. I wish there was a way to make it better. No parent should ever have to bury a child. Unfortunately, I know too many that have, due to a variety of reasons. It’s always terrible it’s always hell. The only thing I can say is that I have seen these mothers and fathers somehow put themselves back together. They are still chipped and cracked, but they are together. They are whole, save that piece that can never be replaced. I pray that you all find the strength to do the same, and I’m confident you will, because it’s who you are in your DNA. Know good energy is being sent your way, always.

  25. Prayers and much love for you, your family and liitle Lea❤ What a blessing to have her with you in your life, if only for a brief physical encounter. Her soul will always be connected to you and those she loved??❤

  26. My heart and prayers are lifted to you and your family. While we have never met, we think of you often and pray for you always.

  27. Lea and your family were the first thoughts that popped into my mind this morning when I woke up. I am praying God is present for you in a mighty way today to give you strength. Thank you for the lessons you have taught me with the things you have posted.

  28. I have always found this comforting. My daughter was quite the artist before she passed, and she loved drawing Pooh and The seven dwarves. I received a card with that saying on it. Pooh and Piglet are walking into the distance and the saying is on the card. I applaud Leas mom with her decisions. The hardest part of letting go is letting go. The suggestions to try this or see another doctor are peoples only way of letting you know they care about you. Shes put it right out there, so she can spend time with her daughter instead of wasting time searching for a miracle. God bless this beautiful baby and keep her and her mom in his loving arms.

  29. I am praying for peace, for comfort, for strength for Lea, you and all your family. I can not even begin to imagine your pain but I want you to know people are here praying for all of you!

  30. I’ll continue to pray for comfort , grace and peace for Lea and strength for you, Mike and all your family.

  31. When my brother and I were kids, we both agreed that candy bars grow like dandelions in the green grass of Heaven, and they are there for whoever wants to pick them – they instantly grow back, so you never run out of them. May your precious little girl know this in her heart.

  32. Hi Christa,

    I do not know you personally, but I work at NHCC and have been following your story with Lea. There are no words, there really are not. I have tears and heartache just reading your blog, so I can not even imagine what you and your family are feeling, nor will I try to. I am saddened to hear of this recent news, I kept up with your blog and was hoping there would be a miracle cure, starting with Lea. I hope that with raising awareness, this terrible terrible disease will eventually find a cure. I hope the love and prayers your family feels from near and far help comfort you in even the slightest way during this most difficult time. If there is anything you need from your NHCC friends here, please please do not hesitate to ask! Continued prayers to you all. <3

  33. Please accept my prayers for your beautiful angel and your Family. I hope you find peace at some point. Kristine

  34. Dear Christa,

    Our hearts ache for you. You are right, there is no way we can say or do anything that will ease the pain. You will be in our thoughts and prayers as you try to navigate through a healing. May your faith keep you strong and guide you.

  35. I will continue to pray for grace and mercy. Thank you for sharing so openly with us, you have certainly brought this disease to light for many who knew nothing about it. Bless you all.

  36. My boys are blessed to have shared a few classes with Lea at Muffy’s. You are in our thoughts daily. Sending you all comfort.

  37. Thank you for allowing us to bear witness and hold space for you, Lea, and your family. My heart aches for you, but I know it can’t be anywhere close to what you are feeling. Because it’s all I can do, I send you all love and hope that it in some way helps you to walk through the unimaginable. ????

  38. We don’t know one another but I passed you today going into CSS, as you came out. I had not read this post or seen the email from Arte yet, but I saw the pain and sadness in your face and wanted to hug you. My son and I just talked about Lea and cried together. Thank you for sharing what you are going through and letting people be giving to you. I know you are surrounded by support and love and I just wanted to add ours. You are all in our thoughts and we are sending so much love to you and your family.

  39. Holding each of you in prayer as you bear the unbearable and make these sacred decisions. As parents you two, together, are completely remarkable. Your family is precious beyond measure.

  40. “How lucky I am to have something that makes saying goodbye so hard….” A.A.Milne

    We will all bear witness. We are all sad for your family. It is not ok. None of it is ok. Saying good bye is awful. I wish I had more words…I wish I could take this pain away….as a mom who has lost her only child, I am with you. I am here if you ever need a hug. But this much I know…love is forever. And your baby girl will always be with you. ❤️

  41. I do not know Lea or her family but today I will love deeper, appreciate more, and pray harder because of You!

  42. Dear dear Christa, I am devastated by this news. And you are so right,

    “People tell me “I can imagine…” I assure you, this is far worse than anything you can imagine.”

    …I cannot possibly imagine. I can only love you guys. Ripley and I are crying with you and sending Lea all the love in the universe. I see you hear you, and witness your heartbreak, dear beautiful mama.

  43. You and your family are lovingly being lifted up to the Father of all comfort who brings strengthening aid when we have no strength left. Our hearts and thoughts are burdened with your sadness and heart break.

  44. From another 7-3 Yale family to yours, we send you strength, love and peace. The number 5 in the Bible represents Grace. The number 5 multiplied by 5 means grace upon grace to all mankind. Tomorrow is 5/5/18. Wishing you grace upon grace. The Richards family

  45. From another 7-3 Yale family to yours, we send you strength, love and peace. The number 5 in the Bible represents Grace. The number 5 multiplied by 5 means grace upon grace to all mankind. Tomorrow is 5/5/18. Wishing you grace upon girace. The Richards family

  46. We met once, many years ago.I am an older woman with grown kids. I knew right away you were a strong woman and a wonderful mom to your young kids. Here is a big, warm, long, soft hug. You and your family have been in my bedtime prayers every night for a long time. I want you to know you and your beautiful little girl are prayed for by so many people that you will never know, but they care. My words are not adequate to express the pain I feel for you right now.All I can send is hugs and prayers. xoxoxo Nancy

  47. You’re Amazing.. the thought of what you face every day.. I don’t know if I could handle it as well as you have been.. your strength is beyond admirable. I wish I could do more than just offer love and prayer and support.. but I will continue to pray for a miracle for your beautiful daughter every single day.
    ❤️ The Twohill’s

  48. Sending she much love and prayers to give you all strength. You are in our hearts and on our minds all the time. ❤️

  49. You are in our hearts and on our minds all the time. ❤️ Sending love and strength and always praying for you.

  50. We haven’t met but I’ve been following your journey and have been fervently praying throughout. I will continue to do so. My prayer right now for you is that God’s peace will settle over your home.

  51. Praying for Lea and your family. There are no words for this… none. God’s mercy and grace be with you all.

  52. All I can do I think to send all of the love, positive energy and grace I have to you and your beautiful family. I cannot imagine the hell you are in. I’m sure you have heard every kind of platitude, so I don’t know if this will help. I don’t think anything really can. But Lea is shedding a body that no longer serves her. And she will return to the Source of pure positive energy. Transforming, like a caterpillar into a beautiful butterfly. You are in my thoughts tonight ❤️

  53. We are praying faithfully for grace, mercy, peace and understanding…God is pouring His love through you, to your sweet girl…

  54. Although we do not know each other I wish I could hug you and give you my shoulder to rest a little bit, to cry or just to silence. Keep you and your beautiful girl in my thoughts and prayers.

  55. There are no words ! My heart is in pain for you and I’m asking God some how to comfort you …… the only joy I get thinking of this whole situation is that one day a precious little girl in Heaven will be the very first to greet you !!!!!! Prayers & love your way ..
    John 14:1-3 , Rev 21:1-5

  56. I hold you,Lea, and your family in my thoughts and in my heart always. I surround you all with love, light, strength and grace. Wishing there was more I could do for you. Love always ??????

  57. God Bless you and your family. I can not imagine your pain. Nor can I imagine where you are drawing your strength from. I will continue to pray for you and your beautiful little girl.

  58. Heartbreaking, so heartwrenching to read..? You and your family’s decisions are very sacred and I continue to pray many, many times a day for Precious Lea and you all, who now are precious to all of us. ????

  59. Dear Doran family,
    Lea and your family are in my prayers daily. Sending you hugs, peace, and comfort. I too believe in miracles and will continue to believe in the power of prayer???

  60. Mike and I are praying for you and holding you all in our hearts. No words to express how sorry we are and how brave and amazing you all are.

  61. May God hold Lea and you in the palm of His hand and may you have all of His grace and tender mercy during this time. Lea came into this world filled with light and spirit, the embodiment of love that is unending. We are with you, bearing witness when we cannot bear your burden.

  62. Thinking of you, and sweet joyful Lea. I’m so heartbroken, and I love you all so much. If you need anything, please don’t hesitate to ask. Praying for you endlessly.

  63. First, my sincerest condolences to you and your family, loved ones, friends and anyone that knows you. The opening quote is spot on. The whole thing is spot on. I lost my girlfriend 4 years ago May 1 to metastatic breast cancer. She tested positive for the brca gene mutation. While she was older than your daughter we had the same conversations about finality and death. I always wished I had the magic wand to wave over her head. I was by her side for a 10 year battle beating it 3times. There is nothing I can tell you or say to you to make it better other than, acceptance and letting go. I have tried for 4 years now unsuccessfully but it will come.

  64. Christa and Mike, I am sorry it has come to this. You truly have a great strength that I know will help carry you through. Sending lots of prayers to help you carry through.

  65. Dear Doran Family,
    We are strangers. My Spring Glen mom friends and The Church of Redeemer friends have told me about Lea’s journey.
    I think sometimes people distance themselves by thinking “Oh that mom must be especially strong to suffer the loss of her child.”
    The answer is no. You are to suffer and you do not have special powers to absorb this horrific loss of Lea.
    One day, you won’t feel like punching everyone who has a healthy daughter or people who complain about shuttling their children to their 1,000 activity of the day.
    One day.
    But right now, you are in the worst of it. The grief will smack you when you expect it and when you don’t expect it.
    However, you will ONE DAY, smile, laugh and not be as sad.
    I almost lost child, but was spared that day. I was at the edge once where I begin tos my good-byes.
    You are in my heart and prayers always, even though we are strangers.

  66. Now that our little Lea is at peace and pain free, she will hear all the angels singing their glorious praises to our Lord and Savior. We are praying for all of you to feel Gods peace in your thoughts. It will take us all a while to recover but with Gods love He will heal us all. God Bless you all.

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