Storms & Wonderings

Christa Doran Uncategorized 4 Comments

Once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But when you come out of the storm, you won’t be the same person who walked in. That’s what the storm’s all about. -Haruki Murakami

I was told she turned the sky green again, just like she did the night of her wake when a tornado ripped through Hamden. I was told she painted another double rainbow across the sky after the downpour had subsided. A downpour that started at the exact moment we started to gather in her honor to raise money for the thing that took her from us.

Lea was a force of nature. Defiant and about who she was and what she wanted she would dig her heels in and fight. This served her well when life gave her something no child should ever have to face.

Being two minutes early to the fundraiser, we missed the downpour by seconds. I carefully walked up the steps in my gold wedges, thankful my hair was still intact, and opened the heavy, antique doors leading into Roia. I couldn’t breathe. There she was, larger than life, her smile big and bright on poster that stood taller than my 5’2″ frame. They call her the “Hero” of the CT Chapter of the Cure Starts Now, but she was my hero long before this night. I could hear my heart beating in my chest and wondered if everyone around me could see it in my navy jumpsuit with a plunging neckline. My mouth was dry and my legs felt like they might give out beneath me. I took it all in and my mind decided it was all too much. I ran upstairs to let the tears flow and try to compose myself. It felt wrong. Being here for this felt so wrong… but I know it was right. It is what she would want. I used the lessons she taught me in bravery to get up and say what needed to be said.

I nursed a glass of white and paced the beautiful space that was quickly filling up with friends, family and strangers dressed in their best.

This night was planned long before she left us, and to be honest, when she first passed I was indifferent to finding a cure. For Lea, it will be too late. Nothing can bring her back. But as I told the two hundred incredible people that filled Roia, helping is what Lea would want us to do.  The night was filled with joy and sorrow, laughter and tears. It was an overwhelming night were we did a lot of good for this cause and raised over $62,000. And two days later I turned 39.

I miss her every day… it is an excruciating feeling, this missing her.  The day I turned 39 I missed the handmade gifts and bright, colorful cards she would spend hours crafting in honor of special occasions, like birthdays. I missed her at the table as we savored my favorite birthday meal, lobster and corn. There was a empty space at the table where she should be… and my heart feels that every second of every day. I missed her the next day as we took our first photo as a family of four. It felt so empty without that one amazing human added so much to our family.

I imagine her a lot. My imagining contains vivid details, right down to her thick french braids, bright colorful clothes, joyful skip and musical giggle. Last week Liv and Keira were sprinting ahead of me as they always do. I turned and looked behind me, where Lea always was, slowly walking as she took in the world around her, never looking where she was going which would sometimes lead to trips and falls. I would stop and say “come on Lili!” “Coming momma!” she would yell ahead to me as she turned her leisurely stroll into a jubilant trot.

But when I turned, she wasn’t there. She is gone. A word and feeling I struggle with every day. Her presence is missed every moment, and in my mind, she will always be six. I will never have the chance to know her at 7, or 8 or 18 or 28… something I struggle with as I see her little friends running around. I quickly size them up and wonder if Lea would be that size. Or what clothes she would insist on wearing. Or how she would insist I construct her hair. Or what amazing art she would have created. So many wonderings. So much sadness.

The weather today is exactly like it was one year ago on this day. How do I know this? Because that was the day I watched Lea fall off her bike and run away in tears screaming that she can’t ride her bike anymore. It was the day we sobbed together on the cream sofa of our brightly lit living room as she told me that she didn’t feel like Lea anymore. That her body felt lazy. That she was hearing voices in her head that were trying to change her. That there was a monster in her brain that was trying to kill her. That was August 9, 2017, the day I called the doctor and said I need to come in, now. One day later they found the monster in Lea’s head. It was a tumor growing in her brainstem called DIPG, that did indeed kill her exactly nine months later.

Tomorrow marks one year of this hell on earth, and three months since she left us.

Today my heart hurts more than usual. Today there is a pit in my stomach that won’t leave. One year went by so fast. We endured so much. And we miss her more than ever.

As I told the amazing community of supporters at Roia, Lea’s short life was not wasted. She continues to impact how I live my life, and I know she does the same for many of you. I have received countless emails, cards and messages about the impact she had on you and the changes you have made in your life because of her story.

Since the start of this hell, I have compared the feelings of grief, mourning and sorrow to a storm that comes and goes in waves. I often imagine myself in the ocean, some days the water is calm and I am floating above the water able to breathe, function and find joy. Other days I am bobbing up and down, some moments my head is above water, other moments I am submerged under the waves. And there are the bad days, the days I sink like a stone to the bottom of the deep ocean, unable to breathe, feeling like I won’t make it, and maybe I don’t want to.

Thank you to those who are my breath in the deep deep water. I am grateful I can continue to find purpose on the days when I sink to the bottom like a stone. That purpose allows me to resurface and move forward, whenever the storm passes.

I have learned that grief is a process that becomes a part of your story… it is knitted into the fabric of who you are. It is not something you get over, or move past, it is a new way of being.

I have been doing my best to grieve Lea, but also honor her. I know she would want me to be happy. She hated to see me in pain, or sad. She wanted to fix it with a hug and an “I love you momma…” Now more than ever, I could really use some of that Lea medicine. I will continue to honor her with the way I live my life. She has been and continues to be my greatest teacher ever.

Grief never ends… But it changes. It’s a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith… It is the price of love.

Enduring The Grief

Christa Doran Uncategorized 7 Comments

I had my own notion of grief. I thought it was a sad time that followed the death of someone you love. And you had to push through it to get to the other side. But I’m learning there is no other side. There is no pushing through. But rather, there is absorption. Adjustment. Acceptance. And grief is not something you complete. But rather you endure. Grief is not a task you finish, and move on, but an element of yourself- an alteration of your being. A new way of seeing, a new definition of self.

-Gwen Flowers

Last week someone asked me  “How is today for you Christa?” I responded with “What a great way to ask that question. I appreciate that. Thank you. Today, I am ok.” Every day brings with it a new set of emotions, different levels of pain, sorrow, sadness and grief, as well as seemingly benign events that can send the waves crashing down over me. Today Mike and I looked over at our oversized, L-shaped sofa and thought back to where we were exactly two months ago, cradling Lea in our arms, soaking every second of our last few hours with her.

 Our last photo with Lea, hours before she died.

I thought two months into this mess I would be in a different place. I thought the pain and longing would have subsided… even if just a little bit. I thought I would have adjusted to the quieter, less chaotic home now that we have one less child in the mix. I thought I would be less sad, with drier eyes and maybe a bit more sparkle in my soul. I was mistaken. Five weeks in the numbness wore off. I came out of the haze. I woke up feeling empty, looked around at my new world without Lea, and was shaken by it, many days thinking I don’t want to exist in it anymore. A world without one of my pieces. One of my parts. One of my reasons for existing.

 My pieces, 2016. Credit: Christina Rosario Photography

My broken heart starts aching in my chest and then the nausea creeps down into my gut. There are days I just don’t want to do it anymore. I don’t want to feel this way for even one more hour. Parts of me want so badly to fast forward through this time to a less painful point in my life that is, hopefully, off in the distance. But it doesn’t work like that. This is a part of my story. A chapter I wish could be ripped from the pages as if to undo it all… erasing the scars and filling the emptiness.

“Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.”

“As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.”

“In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out.

But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.”

“Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself.

And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.” Credit 

The work feels hard. Many days impossible. In order to find my way out of the wreckage, as much as I don’t want to, I am finding ways to help with this process we call grieving. Weekly bodywork, writing this blog openly and honestly, exercising and moving my body, and spending time with those I love are a few of the things I have been doing to help me endure this. I am searching for a therapist to talk to about this process and how to move through this in a way that serves me best. I am saying no to things that I don’t want to do or that don’t feel right for where I am. I am allowing myself to feel, and be, and weep, and mourn any way that feels right to me in that moment. I am not hiding my tears, or my grief, or the messy, ugly parts that go along with this.

I had a dream last week that we lost Keira. I woke up shaken, as I now know, this is a reality. We are touchable. Fragile. Every day I feel so vulnerable in this world, yet every day feels more valuable than it did before August 10. Lea’s death forced us to realize how quickly your “everything” can be taken away from you, and your life can crumble before your eyes.

Many days Lea’s absence seems to consume me. The waves seem bigger, angrier and more violent these past few weeks as we continue to float in the wreckage. Liv and Keira have been missing her more as well. The buffer she created is gone and Liv and Keira fight more than they used to when Lea was here to offer another playmate when one is tired of the other. We talk about Lea all the time… about all the things we loved about her. We tell our favorite Lea stories. Keira wears a Lea shirt. I flip through photos of Lea BC (before cancer) and cry, every time telling her out loud how much I love her and miss her.

On the particularly hard days, when I am missing her the most, I imagine her running, jumping, skipping, laughing, dancing, and painting Heaven with her joy. All things this life took away from her, but the next one can not. I know my work here is not done yet, but I look forward to the day when I join her, and can bask in her joyful sparkle once again.

  Melancholy by Albert Gyorgy. Geneva, Switzerland.

Resilience

Christa Doran Uncategorized 10 Comments

Man never made any material as resilient as the human spirit.” – Bernard Williams

Resilience: The capacity to recover quickly from difficulties; toughness.

Five weeks. The amount of time she has been gone, leaving a gaping hole in our hearts, and what feels like a huge age gap between Liv, 9, and Keira, 4. The amount of time it took for the sympathy cards to stop and the text messages to slow. The amount of time it took for me to wonder if people will forget her… or worse, if we will forget her.

 Our last field trip together.

I was looking back on an image I took exactly one year ago on a field trip with Lea’s class and thought to myself “I wish I had gone to more field trips. I wish I had been there more.” Then, a parent from her class sent me an album filled with photos and videos of class activities and field trips… and there I was. In almost every single image. I am having trouble remembering those amazing times. The funny, silly, joyful times with her. But the ugly, awful, gut wrenching times? Those moments seem to be seared into my memory and haunt me on a daily basis.

I opened her sock drawer for the first time in five weeks and my eyes fell on all the bright, colorful socks that were stuffed in her top drawer. I quickly slammed it shut and walked out of her room remembering the exact socks she was wearing the day they found the tumor, August 10. There are moments like that one where I push it all out of my brain, not wanting to feel it, or process it, or “deal” with it. There are days I imagine she is at a friend’s house, or at school, or still asleep in her bed. And there are days where her absence is undeniable and hurts more than I have the words to describe. Those days I am having a tantrum on the inside, kicking and screaming, writhing on the floor crying, unable to function. But that is on the inside. One the outside, most of the time, I keep it together in order to go about my day and do what is required of me.

What is required of me grows week by week as life fills with more and more normalcy. For the first time in months I sat on the brightly colored couch across from my leadership coach. We discussed what is next for me, and my business, and how I was doing managing the great big mess. Eyes filling with tears I told her that I feel like the worst parts of me died with Lea. The parts of me that were over-scheduled. The parts of me that felt the need to control everything. The parts of me that put work before family and friends. The parts of me that got upset about things the “small stuff” that doesn’t matter. The hasty parts. The uptight parts. The high-strung parts. The fearful parts.

Fear was an emotion I experienced on an almost daily basis before Lea was diagnosed with DIPG. Then, the thing I was the most fearful of happened… and I survived it. It battered me, it beat me down, it tossed me around, it made me unravel. It also made me face my worst fear as it taught me about bravery and resilience and forced me to take deeper roots.

Storms make trees take deeper roots. 

Lea was beautifully different. She was creative, fiery, defiant, and one hundred percent herself. I now stand firmly in who I am and have an unwavering sense of self thanks to her and the perspective she gave me, and so many.

There are only a few tickets left for The Cure Starts Now Fundraiser in Lea’s honor on July 28. Learn more and get your ticket here. 

Me, Bravely.

Christa Doran Uncategorized 13 Comments

Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up. -Anne Lamott

Too many “good” days in a row usually means a kink in the line and a breakdown to follow. The weekend was sunny and bright, filled with lots of distractions and laughter, which is both beautiful and dangerous. When I remain distracted, and don’t take the time to process the sadness and move through the grief, it catches up to me, building and building until is bubbles over when I finally sit in silence.

In the midst of the distractions this past weekend I took a big step and asked someone to take a photo of me, with my two daughters. This is the first time I have taken a photo with my girls since Lea’s death and it was both sad, and a step through the pain. I don’t believe I will ever “move past” this, but I can move through this, however seems right. And taking that photo, on that day, felt right.

Last year

This year’s photo was missing one of my children, as well as the sparkle in my eyes. I looked at the photo and wondered when that sparkle would return, when I wouldn’t look so dead in the eyes…tired, sad and defeated. Then I remind myself that these eyes have seen things they never should have, and while my eyes may have lost their spark, they are filled wisdom, strength, sadness, love, commitment, grief, joy, pain, fatigue, perseverance, more strength and more love (thanks to the friend that reminded me of this). They are a bit less sparkly than they once were because one of my sparks is missing from my life. The spark that allowed me to love deeper than I ever thought possible, to face my darkest fears, and to be me, bravely.

Caring for two, healthy children is easy compared to what we were used to. While the emotional work is hard, the daily and hourly physical work is so much less. Lea required full time care and that took everything we had in order to hold it together and provide her all we could in every way possible. It took so much work to keep our spirits up, to carry and move and position her body, to meet her every need and want. Now that it’s over, it feels like I am experiencing an unravelling of sorts, in every way possible.

Unravelling is a good way to describe how I feel every day since Lea’s death. As I peel back the layers of grief and sorrow, I also have to face the daily triggers, a something that causes deep sadness while reminding us of how much we have lost.

Triggered, as I clean the “teeth” drawer, purging old toothpaste tubes and toothbrushes that should have made their way to the trash months ago, and I find Lea’s toothbrush. I immediately had a vision of her perched on the purple stool, one of us behind her for support, scrubbing her teeth with her left hand as well as her ability allowed on that day. I wanted her to be here so badly, next to me, screaming through foamy mouth that she was done scrubbing and needed a boost to rinse.

Triggered, when I finally threw out the remains of the last thing Lea had baked. I had held onto it long enough and it was starting to mold, but the thought of throwing something away that she made, something I could smell and taste that she had a part in, felt impossible.

I remember scurrying through our cabinets in search of something to bake, preferably, chocolate. Minutes later Sabine and Lea were perched at our kitchen island measuring, mixing and stirring the thick, rich chocolate in a stainless bowl. Later on that night we enjoyed Lea and Bean’s delicious cake, covered in a healthy layer of chocolate frosting and rainbow sprinkles. This was the last cake Lea would ever bake, and the last time she would see her best friend Bean, as she died just two days later. I am so glad I said “yes” to her baking request and the beautiful mess it created.

Lea & Sabine, May 8, 2018

Triggered, when I find her sneakers, still in perfect condition, sitting on our hall shoe rack. I gather all of her shoes and put them in her closet, longing to lace them up for her, even if for just one more time.

Triggered, when one unassuming night I looked at Lea’s empty bed and it hit me that she is never coming back. I imagined her the way she used to be, asleep in her bed, full cheeks and sweet profile, french braids undone from a full day. I start to panic at the thought of never being able to kiss her, or hug or, or smell her, or experience her. That night I went to bed with two of her turtles and two puffy, red eyes.

We have been unable to pack away any of her things. Her room and office exist the way they were when she was with us. I know the day we will come when we will be ready, but that day is not today.

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” -Vicki Harrison

 May 2

This Thursday will mark one month since her death. We are resuming our routines and finding a new “normal.” I went back to work last night. I am so grateful to do a job that I love, where I feel a deep sense of purpose. I couldn’t imagine returning to work that I hated. Our house is quieter, less chaotic and crazy. Liv and Keira are doing as well as they can be. They have always had a special connection, but now, they are closer than ever. Thick as thieves. Bonded tighter than ever because of this shared tragedy.
I know this is how it is going to be. Lows, and even lower lows. Even (almost) four weeks later, it still seems like a dream, and there are still moments I feel like this can’t be happening. She can’t be gone. Those nine months we had “left” with her went by far too quickly, and I wish we were still in them. Because as bad as many of those moments were, I could hug her and kiss her and smell her. I replay memories of her in my head so as not too forget her. Part of me wants them to fade, in hopes that the pain and sadness will fade with them, and another part is scared to forget her and the amazing girl that she was. I know someday the sparkle in my eyes will return. Until then I will show up and face each day as bravely as I can, because that is what she would do.
Be you. Bravely.
From Lea’s kindergarten journal, January 17, 2017
Saturday, July 28 there is a Lessons From Lea Cocktail Social to benefit The CT Chapter of Cure Starts Now. Get your tickets here. Space is limited and more than 50% of the tickets are sold already!

The Tornado

Christa Doran Uncategorized 21 Comments

To love someone fiercely, to believe in something with your whole heart, to celebrate a fleeting moment in time, to fully engage in a life that doesn’t come with guarantees- these are the risks that involve vulnerability and often pain…I’m learning that recognizing and leaning into the discomfort of vulnerability teaches us now to live with joy, gratitude, and grace. -Brene Brown

I chose an outfit she would have loved, a navy blue polka dot dress and bright green wedges. My petrified body marched into the large room where her wake would be held and took in something no parent every should. My six year old child was in a short, white coffin, surrounded by photos from her too short life. I wailed. I shook. I sobbed. I looked up at the heavens, tears flowing like a faucet. I shook my head “No.” I asked God “Why?” I couldn’t get too close to the coffin without feeling like I might fall over and collapse. I didn’t touch her or kiss her because I refuse to remember her like that.

The funeral was standing room only. Then there was the burial. A goodbye to her earthly body that had betrayed her. Our friends and family walked up two by two, some unable to make eye contact with me, tears falling onto the petals as they laid a single flower on her coffin, then walked away. After everyone had come and gone I stood in the rain and thought… “Now what?” 

Now, the real work starts. The re-building after the wreckage.

The truth is falling hurts. The dare is to keep being brave and feel your way back up. -Brene Brown

Today I drove through the wreckage of the tornado that hit Hamden at the exact moment of Lea’s wake. The past nine months has felt like a tornado. An uprooting of our lives. An angry, violent and tumultuous event that ripped through our family, flipping us upside down, smashing our hearts and souls, and destroying one of the things we love the most in this world.

On that violent night, when I saw my six year old child in a coffin, it felt as if my world was over. If I am being honest, there were moments I wished it was.

 The sky in Hamden during Lea’s wake. Do you see the heart?

We were brave, and strong, and we fought hard with her. Now we have to figure out to heal, and mend, and rebuild a new life, without her. A life that very frankly, scares the shit out of me. And where do you even begin? When the wound feels so deep and raw, like it might never close… where every minute is filled with a new set of emotions.

The next day the sun came up, like it always does. I got out of bed, put one foot in front of the other, and made a coffee… just like every other morning.

 #purpose

It took Lea nine months to grow inside my body. It also took nine months for cancer to overtake her body as we watched. As quickly as I became a mom of three girls, I became a mom of two… and that feels so wrong. Most of the past nine months feel like a blur… a bad dream, a horrible nightmare, filled with the most awful things we could ever imagine enduring. But we did. And here we are, still standing. Forever changed, but still standing. Broken, beaten and so very sad, sprinkled with a touch of anger and a dash of envy…but we are still standing.

We are taking this grieving and healing process one moment at a time. I believe there is no right or wrong way to do this… there is only what feels right to us, today, and every day looks so different. Some nights are unbearable. My newfound anxiety takes control of me, my blood pressure skyrockets and it feels like I want to crawl out of my skin, unable to find peace or calm. On those nights I am thankful for prayer and Ativan. Some mornings are horrible. Like when I forget she is gone and go into her room to wake her up… only to find her empty bed, perfectly made and covered in her favorite stuffies and Beanie Boos. On those mornings, I am thankful for three amazing distractions and work that gives me purpose.

Fear not, for I am with you. -God

Tomorrow would have been Lea’s seventh birthday. To us, she will forever be six.

 One year ago.

I am sure she is eating plenty of chocolate ice cream in heaven, as Lea’s heaven has candy lined streets. I can see her up there, skipping, smiling, painting the heavens in bright and beautiful colors, and making everyone around her laugh as they marvel in her joy and sparkle.  I miss her every second of every day… some seconds hurt more than others.

One of the many things I have learned through this tragedy is the true resilience of the human spirit. It can be shattered into what feels like a million pieces and then, slowly rebuild, stronger and wiser than it was before it was broken. Today marks two weeks since her death. Today I actually laughed. And smiled. And while we are not ok, I know in time we will be.

Lea’s story might be over, but ours isn’t. I will continue to document our “what comes next” and how are are navigating and healing. And to answer to many of your questions, yes. Someday, I hope to write a book, but for now, there is so much more to tell.

Experience and success don’t give you easy passage through the middle space of struggle. They only grant you a little grace, a grace that whispers, “This is the part of the process. Stay the course.” Experience doesn’t create even a single spark of light in the darkness of middle space. It only instills in you a little bit of faith in your ability to navigate the dark. The middle is messy, but also where the magic happens. 
 -Brene Brown, Rising Strong
We would like to compile photos and stories from Lea’s life. If you have anything you can share with us about Lea, your interactions with her or your favorite moments and memories, please email us at lessonsfromlea@gmail.com. Feel free to send multiple stories!
There are a few days left to get your Owl by Lea t-shirt to benefit the CT chapter of the Cure Starts Now. Get yours here. 
Saturday, July 28 there is a Lessons From Lea Cocktail Social to benefit The CT Chapter of Cure Starts Now. Get your tickets here. Space is limited.

The Last Good Day

Christa Doran Uncategorized 49 Comments

“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.” -Ronald Reagan

There are many events I imagined planning for Lea when I gave birth to her almost seven years ago. Her funeral was not on that list.

 May 25, 2011

This is the part of the story when I tell you Lea didn’t make it. She wasn’t the one to beat the impossible beast. This is that horrific post where I tell you we watched our six year old daughter die in our arms. We heard her last breaths. We watched her lifeless body get zipped up in a body bag… an image that will be forever seared into my memory and one that will give me nightmares I imagine, for the rest of my life.

Harsh? Yes. The past nine months have been nothing short of harsh. Childhood cancer is harsh. DIPG? Even harsher.

Lea didn’t even make it nine months. She died two days before Mothers Day, and 15 days before her seventh birthday.

I have decided not to sugar coat any part of this journey in order to spread awareness and perhaps, help another family facing this mighty beast called DIPG.

We knew this day was imminent. I prayed every day and every night for a miracle… and then, asked God if He was not going to give her a miracle, may He show her, and us mercy. And He was. Our mighty God was merciful.

I was so fearful about the end, petrified of what we were going to face, and if she was going to be suffering in her last days. But she didn’t.

At the advice of our amazing team at Yale, Mike and I decided not to intervene. We were going to let DIPG run its course, even if it meant less time with our amazing girl, because it would mean less pain and suffering for her. I remember our doctor telling us that the only saving grace of DIPG is that if you don’t intervene, the end is usually peaceful. We had their word that they would do everything in their power to make sure Lea was not in pain and we felt supported. I am so glad we trusted their advice and listened.

Her last good day was Wednesday. It was a beautiful day filled with sunshine and a warm breeze. Armed with Oreo cookies and some friends, I pushed Lea around the neighborhood as she laughed and sang and snapped her “more powerful” hand. We had her favorite pizza. We ate a “Lea owl” ice cream cake. We watched her favorite show. She saw her favorite people.

Wednesday morning Lea was in a lot of discomfort so we gave her pain meds and called in the hospice team. She struggled for a few hours to get comfortable, and finally, at 11:30am asked to be put on her belly, a position she never sleeps in, but quickly fell asleep in. I stayed close by as she rested, writing a blog that will never get published, because her life ended less than 12 hours later.

After her breathing became very noisy and I noticed she hadn’t moved at all in several hours I went over and picked her up, attempting to wake her… but she wasn’t there anymore. At some point during her nap, she must have slipped into what appeared to be a coma. Her breathing was labored, she was unresponsive, her body limp and lifeless, but she didn’t seem to be in any discomfort or pain. She was not speaking or moving, only breathing.

We gave her medicine to calm her breathing and took her upstairs to our bed at 9pm, positioning her body on her side as our doctor advised us to.

I snuggled up next to her like we did every night that she slept with us, hand in hand, head to head. I told her I loved her so much. I told her how glad I am that God chose me to be her mom. I told her she was special, and safe, and loved. I told her she could go… and then thanks to Ativan, I drifted off to sleep. At 10:55pm I woke up to Lea’s jagged breaths and Mike praying over her. She took four, horrifying, jagged breaths… and then she was gone. Peaceful. Free from pain and suffering. Free from her earthly body that had failed her.

I saw her in my mind skipping the way she used to down the streets of heaven, which Lea hoped were lined with candy.

We sobbed over her. We hugged her. We told her we know she isn’t in there anymore but we love her. We shook our head in disbelief and cried out no, no no… We stroked her sweet face. We held her sweet, small, perfect hands. We smelled her and kissed her all over, knowing this would be the last time we would ever do this. We laid in bed with her for what was the quickest two hours of my life.

And then they took her away.

For almost seven years Lea has been with me… and then… she wasn’t. It the strangest, most awful, most nauseating, gut wrenching feeling in the world knowing you can never see or kiss or hug or speak to your child again in this lifetime.

The next morning I felt numb, but also at peace for the first time in nine months. There was a sense of relief in Lea’s death. We no longer have to watch our once healthy child lose function day after day, or endure constant tests and medical interventions, or wonder if she will suffer a painful death, or wonder how it will end. It is over. We are so tired. And so glad that Lea is no longer in pain, forced to watch as her body fails her day after day.

I have been blessed with a very special group of friends, who are amazing distractions, margarita makers and force-feeders. Unable to change out of the clothes from the night before, we drank margaritas, cried, laughed, and shared our favorite Lea stories. We set up flowers and pictures of Lea inside my family room for everyone to remember the gorgeous, bright, sparkling girl that she was.

We are experiencing a sense of pain and loss that is indescribable. Worse than I imagined. But I truly believe everything in my life thus far has led me to this place. God knew I would need this community for this tragedy. He knew I would need an amazing family and an army of friends who are literally holding me up and standing by as we go through life’s very worst.

Walking with a friend in the dark is better than walking alone in the light. -Helen Keller

Lea taught a lot of people a lot of lessons, including us. She has been a blessing in our lives as well as touched the lives of thousands through her sickness, and now, her death.

Because of the reach Lea has had, the thousands affected by Lea’s journey, and in order to do what is best for us during this impossible time, we have decided to make the wake tomorrow night private. Close friends and family are welcome at the wake, and Lea’s amazing community is welcome at the mass on Wednesday. We welcome you to wear your Lea Owl tee, or Lea’s favorite colors, green and blue as we celebrate the life of one amazing girl.

More information can be found here.

Thank you for your continued prayers and support during this impossible time.

This story isn’t finished yet.

You do not get to choose the events that come your way, nor the sorrows that interrupt your life. They will likely be a surprise to you, catching you off guard and unprepared. You may hold your head in your hands and lament your weak condition and wonder what you ought to do. To suffer, that is common to all. To suffer and still keep your composure, your faith and your smile, that is remarkable. Pain will change you more profoundly than success or good fortune. Suffering shapes your perception of life, your values and priorities, and your goals and dreams. Your pain is changing you. -David Crosby

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. 

 

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)

Eyelash Wishes

Christa Doran Uncategorized 35 Comments

Lea was curled up on our oversized khaki sofa, the place she had been for the majority of the past two weeks thanks to yet another unsuccessful steroid wean. Her head was nestled in my arm as two thick, black eyelashes sat on my index finger. You get two wishes Lea! One for each eyelash.

I wish Pippi Longstockings was real. 

Poof.

Lea as Pippi, 2015

And I wish for a long life with Momma.

Poof.

Here we are. Month eight plus two days. I still wonder how we got here. I still ask why me? Why us? Why her? Why, why why…

A few days later we are back in Naples. It’s only day one of our trip and I’m ready to come home. Part of me wonders if it was a mistake even coming here in the first place. My eyes are blurry with tears as I look out at the sea of seemingly perfect familes walking past us, smiling, skipping and laughing. I feel like I am being held under the water, struggling to find air and make sense of this. I can feel the envy mixed with anger building inside me. Lea is back at the table curled up in Mike’s arms in pain, she won’t eat, or play, or engage. Liv and I start to cry and so we decide to leave the table. We make a quick exit and start to walk hand-in-hand down the perfectly landscaped street, sundresses brushing the ground, tears running down our bronzed cheeks.

We find a bench to sit on, our matching brown eyes are now wet and locked in a worried gaze. I don’t know what to say to her. I struggle to find words to make sense of this to grown adults, never mind to my nine year old. I tell her that I know this is hard. And I know we don’t have answers. I assure her we will get through this, together. I tell her to pray to our mighty God for peace. I tell her we are going to be ok. As I say the words I struggle to believe them myself… but I tell her anyway.

Later that night I google the closest pediatric emergency room. Just in case. I am thankful for the two vodka drinks I had at dinner and Friends reruns all night long, as they help to slow my mind and allow me to sleep for a few interrupted hours.

Right now Lea is sleeping next to me, her pajamas from the night before are covered in chocolate ice cream, one of the few things that makes her happy these days.

We are supposed to be at a 7th birthday party for a friend. She tells me through tear filled eyes and gasps that she doesn’t want to go. When I ask her why, she tells me that all the other kids will be jumping in the bounce house and she will be sitting there. I join her sobs and gasps and we hug. For a long time.

Watching your child lose function and ability while simultaneously losing interest in life is extremely painful to say the least. Lea used to sparkle and shine, now it is rare to see her happy and enjoying life. I regularly wonder how she feels as I dress her and bathe her, help her go to the bathroom, help her walk, or carry her from place to place. She is dependent on us now. Her legs don’t want to work. Her speech is slurring and she sometimes drools. Her eyes are tired and lost, void of emotion or expression. Such a far cry from the independent firecracker she used to be, eyes full of joy, or rage, depending on the moment. I miss her. I miss our old life. I don’t want to do this anymore. I don’t want to face what I know is coming next. I want to quit. I want out.

We have another MRI on Wednesday in Boston, but I don’t need an MRI to tell me what is going on. I know in my heart the monster is back.

Part of me wants to live in this moment forever because it means Lea is with us. And another small part of me wants it to be what it will be. I know she is not happy and enjoying life. I know this is no way for a six year old to live, watching life go on around you, unable to participate as you once could.

That part is painful. For all of us. Right after I was told my child was going to die, I walked out into the Yale hallway to people laughing, lunching, and sharing stories. My world is being ripped apart, and yet life goes on.

If only her eyelash wishes would come true.

The Bleeding Heart

Christa Doran Uncategorized 11 Comments

The wound is where the light enters you

Rumi

We have a table of family photos that sits behind the couch in our living room. Today I went in and noticed one photo had fallen over. I picked it up and my face softened as five faces smiled joyfully back at me. It was one of my all time favorite family photos.

I went to stand it back up and it immediately fell right back over. When I studied it closer I noticed the frame was chipped in two different places and the kickstand that holds the frame up was broken. Isn’t that ironic, I though to myself. Certainly seems fitting for where this family is right now, a bit broken… a bit wounded, a bit feeling like my legs have been kicked out from underneath me. I laid it back down and added “frame” to my next Target run list.

I think one of the hardest things about going through this is that you feel like you are alone on an island. I know I am not alone. But despite the thousands praying and the strong network of family and friends we are blessed with, no one I know personally has ever gone through something like this. No one knows quite what to do or what to say. So they say things like “every thing happens for a reason, right?” Like the girl at the coffee shop last week when she saw me for the first time after hearing about Lea. The smile quickly left my tired face as I answered “No. I don’t believe that.” Or they give you books titled “How Not to Die.” Or they send you diet advice for your six year old on steroids. Or they tell you that “God only gives you what you can handle.” I am sure all those things were done with good intentions, from a place of care and concern, but they were certainly not helpful to me during this time. Maybe you have said or done something like this because you don’t know what to say or do, and that is ok. I have done similar things when faced with unimaginable situations that I could not relate to. What I have come to learn from my own unimaginable situation is that sometimes… ok, almost every time, saying nothing is more powerful than asking “How are you? How is everything going? How is Lea?” Sometimes a warm hug is better than a book or advice you found on the internet. Sometimes a squeeze on the arm is better than saying “everything happens for a reason, right?” And a kind smile is always better than a look of pity and sorrow.

Imagine one day you are walking down the street, the sun on your face, a skip in your step, and suddenly someone sprints (not runs, not walks, but sprints) up to you, rips your heart out of your chest and puts it into your hand. You stand in total shock, struggling to breathe and keep your feet underneath you, bleeding heart still pumping in your hand. Before they walk away they say, I have no idea when it will stop beating. It could be two weeks, it could be nine months. Oh, and there is no way to get your heart back in your chest.

All your friends, family and social media “friends” find out about your horrible situation and suddenly you are bombarded with advice. Rub some kale on your heart, I hear kale can fix this! Are you eating blueberries? Because you should. Are you eating carbs or sugar? Because you shouldn’t. Rub some essential oils on your heart, it will for sure put your heart back where it belongs. Think positive! That will help your heart keep beating. I had the same thing happen… except it was my toe… and they were able to re-attatch it… but I know exactly what you are going through. And on and on the advice goes, which only makes you feel more and more alone as everyone giving you this advice still has their heart in their chest. Where it belongs.

My own heart feels like it is ripped from my chest every time I think about life without Lea’s sweet smile or “I love you momma’s.” She is the only one of my girls who calls me momma. Or gives me hugs whenever I ask. Last week Liv ran by and I yelled after her, “Liv! Can I have a hug please? I need a hug.” “No thanks mom.” Keira buzzed by next and I posed the same question to her. “No mom. I’m doing something.” Lea came shuffling around the corner a few moments later, sweet smile across her face and I asked her the same question. She didn’t answer me, simply waked into my open arms wrapping her powerful arm around my neck. I helped get the other “less powerful arm” (Lea’s words to the doctor on our last visit) around my neck and soaked it all in. Every smell, every second of this embrace, thinking about how awful life will be without this incredible little person. Lea is different than my bookends Liv and Keira. She is cut from a different, and very special cloth. She slows me down and teaches me so many lessons. Lessons from Lea and it’s hashtag was actually started one month before her diagnosis. If you search #lessonsfromlea on Instagram you will notice the first post is from July 18, 2017. One month and one day before my heart was ripped out of my chest and handed to me.

Tomorrow is Easter, Lea’s favorite holiday. The pit returned as I pulled out three Easter baskets from the third floor. And again as I counted three sets of pajamas, three crafts and enough candy for three. There was a time where I wondered if she would make it this far, and I am so grateful she is here with us, but every holiday we ask “is this the last one with Lea…”

Lea’s last MRI showed stability. Right now, it does not appear to be growing, and it looks as if the tumor is dying. It could be from radiation, it could be from the clinical trial, they don’t know, and won’t know until about 9 months out. May. That dreaded nine month marker that most DIPG kids don’t make it past, and the month Lea is supposed to turn seven.

Lea and I have both had trouble sleeping lately. She has been up with headaches, which sends me to a terrible place. This past week she has been on the couch more and eating less as a result of another attempt at a steroid wean (or so we hope.)

We are hoping to make it to Florida one more time before summer arrives. It is Lea’s favorite place and we had such a joyful time the last time we went. We are hoping for one more glorious trip before we face May and beyond.

Lea has her next treatment at Dana Farber this coming Wednesday and another MRI and treatment is scheduled for April 25. Please continue to lift us up in your prayers. Prayers for sleep, for a successful steroid wean, for complete and total healing, and for one last trip to Naples. Thank you for your blue lights, tight hugs, “I’m thinking of you’s” “You are in my constant prayers” and cards of encouragement. You provide the support I often times cannot provide myself and I continue to be blessed by this incredible community. xo

#lessonsfromlea #bravelikelea #defeatdipg #morethan4