White Denim Regret & A New Year

Christa Doran Uncategorized 29 Comments

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

In my opinion, a snow day is the perfect opportunity to organize all things you just never seem to have the time to. I approached the pile of clothes hidden in the corner of my laundry room with vigor. You will find a home today! I thought as I organized the clothes by size and season. With three girls, the clothes we buy certainly get a lot of wear. And then there are the “special” things we buy specifically for each child and their preferences. Last summer Lea saw a white denim jacket at the Gap and wanted it. Secretly jealous it was not available in my size, I purchased it for her. Today as I rummaged through the pile I found that jacket… and realized she never got to wear it. The one time she asked me to put it on her last summer I said no. We were going to an outdoor pizza and ice cream party where it would be a magnet for stains.

 May 2017

I pulled the jacket out of the pile and started to cry as I thought back to that moment. I feel so terrible for not letting her wear this jacket I thought to myself as I stroked the perfect white fabric. Little did I know, it would have been her only opportunity to wear this as a few weeks later she would be diagnosed with DIPG, be given two weeks to nine months to live, and quickly outgrow all of her clothes, including this white denim jacket. More than four months on steroids has put more than twenty pounds on her small body, left her with deep purple stretch marks from her waist to her calves, as well as a closet full of clothes she is unable to wear, including this jacket. 

So many everyday experiences are painful. Like packing up Lea’s clothes. Or thinking about plans beyond one month from now. Or when people talk about the summer and wishing it was here (like I usually do in the bitter winter months.) Or hearing the words “happy new year.” I don’t feel happy, and I sure as hell don’t want this year to be here. I wish I could stop time I thought as I watched the ball drop snuggled next to Lea in my king size bed. 2018 will either be the year Lea beats the unbeatable because of a miracle, or it will be the year we bury our little girl.

A woman who lost her son to DIPG in October after a 9 month battle wrote this on New Years Eve. It was as if her words could have been mine…

My initial reaction was that 2017 was the worst year of my life. But when I think back over the last year it wasn’t. I had the worst heart break of my life. But we made the best memories in 2017, we loved so much in 2017. We realized how loved we are by so many. After a tense fall where our country seemed so divided we have seen so many acts of kindness and people reuniting. We have fallen in love with our community more than we ever imagined. People that we knew so well and people that we never even met supported us through our darkest days.

We certainly know about dark days. I feel like every day is dark, with moments of light. On a daily basis I look at Lea and scream in my head “DON’T LEAVE US!” On a daily basis I look at her sweet face and wonder how I will go on without her in my life… or how this could happen to Lea and our family. I have those moments where I feel  sick to my stomach over our situation and completely panicked. It kind of feels like I am drowning, very quickly. Once I catch my breath, I always pray. I pray for peace first and then a miracle. I can hear God speaking to me. He usually tells me to trust Him. I usually argue back, telling Him I do, but this is so hard… and why me… He usually tells me He won’t leave me, that He is with me always. I know all of this and feel all of this, but I still don’t understand it. I know He is faithful and will guide us through this, even if Lea is not miraculously healed. Even if He gets her. Hearing people tell me that “God only gives you what you can handle” makes me want to punch someone. My God did not give this to me. My God did not give my daughter cancer. My God does not work like that. He will use this, but He did not do this. 

As you can tell, my anger is still very much alive. It is tempered by sadness, and served with a side of jealousy for everyone living a normal life with normal problems. I am also in this place (that I can’t stand) where I have less empathy for anyone going through anything that isn’t at this level of awful. Oh yea, well your kid is not dying so… And I hate that I feel that way. I want to care, I just don’t. I want to get excited about the good stuff, I just don’t. This monster has taken a piece of me away. 

It has also taught me lessons about wearing white denim. Living for today, present in the moment is one of the many things Lea’s cancer has taught me. The mom I am today would let her wear white denim anywhere she wanted, to any party, eating any amount of pizza and ice cream. 

 NYE 2017

How is Lea? Lea is stable. Physically no better, but no worse. She is still unsteady on her feet and loses her balance easily. Her right side is significantly compromised and she has become a lefty. She handled two steroid drops in two weeks like a champ and is currently taking .5 mg/day. We have hopes to get her off of them completely. With this drop in steroids we are seeing more of her incredible personality return. We head back to Boston next Friday for treatment #4. Three weeks has never felt so fast and I am dreading Feb 1 where Lea will have a sedated MRI to see what the tumor is doing. I would rather savor each day and live in ignorance, handling the situations as they arise rather than knowing if it is growing or not. That trip we will spend our first overnight as Lea will have her MRI one morning and treatment the next. 

How are you? I am someone who always wishes winter away, and yet I find myself petrified for the summer to come, unsure of what it will bring. Each week that passes I get more saddened by this situation. She is such a special child. A true gift to me. It devastates me to think of life without her. I am devastated. Every day. 

October 2016

The actions you take as a DIPG parent are very personal. Many have reached out with suggestions and I know they are all well intentioned. If there was a cure, we would sacrifice anything to make sure Lea had it. Right now, even the best experimental treatments (Mexico) are just life extenders that come at a very high cost in many ways. I want Lea’s time left here to be in her home, surrounded by people she loves. I want her days to be filled with joy and things she loves doing. I don’t want it to be spent in a hospital or on a plane. This is a personal choice and one I have made peace with. 

Comments 29

  1. Your words of grief are so familiar to me. My mom died suddenly when I was 36, I never had time to say goodbye and have now lived with four years of so many wonderings. Wondering what grandmother she would be to my daughter, wondering how she would look as she aged, wondering about the talks and laughs we’ve missed. Grief is the most painful and unwanted experience anyone can ever have and I pray for you travel with it gently.it can make us think and feel some ugly thoughts, as you’ve shared. As ugly as it is most days, you’re walking forward with it with care. Hugs and prayers.

  2. Your comment “He will use this, but He did not do this” is so so profound and I could not respect you more. Although we see the form of God differently perhaps, I am in total loving agreement with that sentence. I wish I had a magic wand Christa. So much love to you and your family

  3. I have so many thoughts about what you are sharing. Beauty, sorrow, heart wrenching, inner strength, faith truth. Getting the words in your head written down are in a way a healing release of all the pain and sorrow, keep writing. Prayers for compassionate care and comfort.

  4. I don’t know You or Lea but I feel like I do! I’m lifelong friends with Katie Brady. Katie has shared your writings and asked for prayers for Lea. I believe in the power of prayer and pray for Lea and your family!! You are very inspiring and your strength is amazing!! ( I’m sure it doesn’t feel that way) I pray Lea beats all the odds against her and that she is the exception!!! May God bless you, your Family and most of all Lea!! ?⭐️?? ??❤️

  5. Thinking of you all daily. You are incredible Christa. Lea could not have a better mother or family to support her.

  6. <3 I sadly enjoy every blog if that makes sense!! I love you and your wonderful family and think of you daily!!!!

  7. Christa,
    I pray for you and your family. May the Lord hold all of you in the palm of His hand.

    “…when you saw one set of footprints, it was then that I carried you…”
    Footprints in the Sand

  8. Our blue lit “Lea trees” shine also in our window constantly keeping my prayers for a miracle for Lea right there, going strong. With thoughts, love, and constant prayers for you all…

  9. Thank you for sharing your strength and your weakness with us Christa. Thank you for letting us in. I too hate that expression, which is not from God. So many of us love you so much, I am blessed and honored to know you. I am always asking for that miracle. ❤️

  10. Thank you for opening up your heart to us. My prayers are with you and your family every day. I find myself checking Facebook to see if you have left us a piece of your heart. I would so buy Lea a denim jacket, just let me know what size you can pm me or call me at work you know Where to find me. Just a small offer. Peace, love and light to be with you daily❤️

  11. I grew up with Michael and Margaret (she posted this to Facebook, where I saw it). I am so sorry for your struggle. Your little girl sounds so strong! My prayers are with you all; may 2018 be the year Lea conquers this struggle.

  12. As a pedi ER nurse I see this true emotional pain to often. My heart breaks for so many parents and children. Day by day, I would sincerly hug you and your daughter.

  13. You, Lea and your family are so strong. Thank you for sharing your journey. All the prayers coming your way- please don’t hesitate to call on us if you need anything while you’re in Boston.

  14. Christa… thank you for being open and real and expressive. I’ve never met your daughter, yet I have this special place in my heart for you and her. She seems amazing and as I look to my 5 year old daughter, I just can’t fathom it. Just wanted to send you a hug and a nod that you are making lemonade out of lemons. You are doing the best you possibly can and you have a silent army praying for your family. Wishing for you that every day from here are like true snow days where the household chores can wait and quality family time is spent playing games, snuggling and laughing. Xo

  15. I am praying for you, your family and Lea. When I read this post, and read what God was telling you, I felt his words, I heard him speaking. He is with you. I truly believe He will perform a miracle on Lea. I know it. Sending love.

  16. thank you for sharing this, my heart goes out to you, Lea and your whole family! Keeping you in my thoughts and prayers, for every day with Lea, and esp. for February MRI… Love from a fellow mom in North Haven

  17. Christa,
    We pray for your sweet Lea daily as well as your family. You are correct, God did not do this…God created us because He loves us. God never intended for tragedy. God meant for Earth to be a paradise, a place where there would be no death. I am praying Psalm 23 for you and for a miracle for Lea. Your transparency is a rare gift.
    The Copeland’s

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