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

I surrender

Christa Doran Uncategorized 12 Comments

She never seemed shattered; to me, she was a breathtaking mosaic of the battles she’s won. 

-Matt Baker

One of my all time favorite photos of my “squad” popped up today as Lea was being sedated for her fifth MRI in six months. A lot can change in a year I thought to myself as I sat in the same room we were told the news of her tumor six months and two weeks ago.  

Lea gave her last MRI the middle finger. It showed progression, but the last few weeks she has shown improvement. Maybe due to a jump in steroids. Maybe the trial is working. Maybe it’s a miracle. Maybe it’s just the mind f*** of this horrific disease. Our kid gets better, then worse, then dies… usually all within one year of diagnosis. 

 Lea jumping on a trampoline on Sunday

Every week I do a count. Current count: six months, plus two weeks. The weeks seem to pass more and more quickly, and I measure them in three week increments with every trip to Boston.

In years past I would wish for and welcome the spring. Today I find myself cringing when friends and acquaintances talk about the summer… the pool opening… the warmer weather… anything that signifies to me that Lea might not be with us. The remainder of that conversation is usually on mute as my mind is asking allllll the questions and I am quickly overcome with all the corresponding emotions. 

Last week I scheduled something in May and found my eyes drifting to a special day in that month, Lea’s birthday on May 25. The pit returned as I wrote “lea birthday #7″ in pencil and dotted the “i” with a heart. 

Lea’s 6th Birthday 

Every day I tell myself that the worst possible thing I can imagine is going to happen. And I will be ok. “Lea is going to die. You will be ok.” Every single day I say those words in my head, as if it will keep it from coming true, or that maybe, just maybe, if I “prepare” enough it will make it even just a little bit easier. Most days I sit in defiance, knowing full well, I will not be ok…and then I will be better…and then maybe, someday, find happiness again.

I remember when Lea was first diagnosed it was months before I felt happiness. But here I sit, six months and two weeks into this nightmare with many, many moments of true joy and happiness. I know it is not the same, Lea is here, but it is similar? With time do you adapt to a new norm and find happiness again? 

Lea looks and acts more and more like our kid each day. Her hair is growing back, she has lost some of the weight she gained on the steroids, she no longer needs or wears her glasses. Her defiant spirit has returned along with her spunk and sweetly singing voice. While it is wonderful, and I am so grateful, it makes it all the more difficult.

Lea smiling at one of the HUNDRED Beanie Boos she and her sisters received thanks to another outpouring of kindness and generosity from this community. 

I know that this thing can take a sharp turn and head south any day. And that makes every single day that much more precious. I don’t ever want to be away from her as I am fully aware that this might be her last “good” day. 

My mom and I sat at the edge of my kitchen island several nights ago, a glass of red in front of us. We discussed all the lessons we have learned and how this experience has changed us, and so many others. This horrible situation is doing good for so many, including myself. I have surrendered completely to my situation. I have been brought to my knees. I have felt the grace of God through the support of my friends, family and community. I have read notes from people who tell me their lives are changed because of Lea and our story. I am a better mother. I have learned to let go of control within my business and trust my incredible team. I have seen how much my family and friends love and support me, even at my worst and most fragile. I know what I want from my life and how I want to live each day. I have a new perspective on life and what is important. And I know it could be worse. 

I surrender who I’ve been for who You are. 

I told that to my friend and she asked me How? “How could anything be worse than this Christa?”

My mind flashed to all the people all around the world who are experiencing tragedy far worse than mine. Their family is without food, and they have no idea when they will eat next. Their children have been taken from them and sold into slavery. They are trapped in a war zone. They have watched as those they love are brutally killed. They do not feel safe. They have no access to medicine, healthcare or a team of doctors. They have no resources. They have no way of escaping from their current situation. 

While my situation is one of the worst I can imagine, people throughout the world are enduring far more horrible things.

There are days where I throw my middle finger in the air, full of anger and all of the “WHY ME’s”… but most days I throw my hands up and fully surrender in the mud. So very thankful for the overwhelming amount of love and support we have surrounding us. For the random cards in the mail. For the thousands of prayers. For the random meals, bottles of wine, gifts and gift cards. For access to healthcare and several teams of experts within driving distance. For resources that allow us to pay our bills and do “extras” that have made these six months plus two weeks with Lea so special. For God’s grace and faithfulness. And for all of the sweet moments of joy we have had with Lea and all the lessons she has taught me, and so many others, about life. 

#lessonsfromlea #bravelikelea #defeatDIPG 

We have two fundraisers on the books in March! Be sure and keep up with on Facebook or check our Brave Like Lea Fundraisers page

The Pit

Christa Doran Uncategorized 11 Comments

“What can I get you to drink?”

“I’ll have a wine… actually, I’ll have a vodka soda please.” Something stronger, to numb the pain… I thought to myself as we sat at dinner, just ten minutes after finding out Lea’s tumor is growing. “Progressing,” as they call it.

As a strength coach, I use the word progress a lot. Progress in my world is good thing, it is what we live for as coaches. We help athletes grow, become more, and get better. We help them make progress. Now, I hate that word and want to strike it from my vocabulary. And from my mind.

The words tumor progression rang loudly over and over in my head and the constant flow of tears stung my already bloodshot eyes. I found myself burying my head in Lea’s neck to give her kisses, and to keep her from seeing my eyes, which told a story I didn’t want her to know.

If you are a parent, and you have ever been unable to find your child, you know the feeling I have in my body far too frequently since August 16. That pit in your stomach, I might throw up, swallowed by panic feeling. I get that feeling every time Lea is not doing well, any time the news of her tumor is not good, or any time we do something that might be “for the last time with Lea.” Like the very next day when they explain how the space that houses the fluid around her brain (cerebrospinal fluid) is getting smaller. This can lead to something called hydrocephalus, where the extra fluid has no where to exit and builds up in her brain. It means she will eventually need a shunt implanted to drain the fluid. Another surgery. Another procedure. Another step closer to the end.

And so we wait, feeling helpless yet again, and watch, and do another MRI in a few weeks to see what is changing… if there is any further “progression” and what this all means for Lea.

Last week I noticed we hadn’t measured the girls in a while. “Lea! Want me to see how tall you are?” I yell out as she excitedly backs up to the wooden measuring stick hanging on the wall in our hallway. I feel the pit in my stomach when I realize the last time we had measured her was in June. Right before the monster was discovered. Another pit when I realize she has not grown. Not even one bit. When Lea realizes this she starts to cry, asking me why she hasn’t grown. “Is it my medicine?” she asks. I choke back tears as I tell her it could be the tumor in her brain.

Lea tells me she just wants to be able to pull her own suitcase through the airport. And can we go back to Florida when her cheeks are not so big from her medicine? Such simple requests. I can’t begin to imagine how hard this all must be for her. Her independence was robbed from her by DIPG, and that is just the start.

Every month the pit comes back again when I count the months on my fingers. Six months since diagnosis. Six months since we were told “two weeks to nine months to live…”

Mike and I often discuss if it would be easier to lose a child suddenly, or know for months you are going to lose them, like us, and all the other DIPG parents suffering through this awful diagnosis. These are the messed up conversations we now have at night on our oversized sofa, which was purchased years ago so that all five us us can fit comfortably. After some thought I choose the later. I told him through sobs that of I had lost Lea living the way I was six months ago, I would have lived with regret for the rest of my life. Lea and I now have a special relationship. We spend a lot of time together playing memory, going to the movies, cuddling on the couch, being silly, and chatting about everything and anything. My family now comes first, far before my business and my work, just as it should, but not as it was.

The most important and valuable things we have in our lives are our relationships. It seems the only way we learn their true value is when we stand to lose them, or when they are taken from us.

I had one blissful week without the pit. We spent the past week in our favorite place, Naples, Florida. A trip we were unsure we would make it to, or through. Armed with a list of hospitals and an ok from our team we decided to take the trip, and I am so glad we did. We had a blissful week swimming, soaking in the warmth, and truly enjoying each other.

Last night Mike and I sat hand in hand at Lea’s favorite restaurant in Naples, Tommy Bahamas. Our eyes were glossy as we looked at Lea, coloring sweetly as she waited for her mac and cheese to arrive. We were both thinking the same thing. Was this her last time here? Was this the last time here for our family of five? Or anywhere for that matter?

It feels as though we have this dark secret. We splash and smile, drinks in hand. We dine and dance and take happy photographs. We hide our pain as we try and soak up every sweet moment possible.

The pit came back as we were pulling out of the resort. I looked back at all three of my girls, buckled into their seats as they said goodbye to Naples, and I said goodbye to my pit free body.

On the way to the airport I check in with another family who is living the same nightmare. I scroll the blog, which is eerily similar to my own, and find this…. I’m learning that when God says, “My grace is sufficient,” that doesn’t only mean some inner peace or acceptance of the lot we’ve been given, it really means in a concrete way that God’s people will show up with handfuls of grace. A card, a gift, a hug and a sympathetic tear. A trip to Florida, a house more suited for the challenge. These are all graces that help us know we’ve not been abandoned by our Savior.”

Update on Lea: Lea’s progression was not enough to disqualify her for the clinical trial, so for now, we will continue to visit Dana Farber every three weeks. She is back on steroids and they are helping with the symptoms we were seeing. For the most part she is the same. No better. Not much worse. We will have another MRI beginning of March. Our next visit to Boston is Friday and this will be treatment number six.

Thank you for the blue lights that shine brightly all around Hamden. When I see them, even though I have no idea who lives there I think “they got us.” We are so grateful for your continued support. This community continues to blow us away and we are so thankful for you all.

Monday, February 19 from 3-6pm there will be a fundraiser at the Clay Date in New Haven.

February 22 from 10:30-12 there is a Yoga Fundraiser at Your Community Yoga Center in Hamden.

You can find more information on upcoming fundraisers for Lea on our Facebook page and the Fundraiser page of our website.

Maybe.

Christa Doran Uncategorized 26 Comments

“Big parts of us got broken, of our hearts, minds and beings. Yet we keep getting up, lurching on. We dance with limps.” -Anne Lamott

This morning I woke up with a sense of heaviness and sadness. I wished I could pull the warm covers over my head and go back to sleep. There are mornings, like today, when I wake up from a deep sleep and think this whole thing is a nightmare. A few moments will go by, the room comes into focus, reality hits and I think to myself, I just don’t want to face it anymore. Thursday’s MRI and our two day visit to Boston is looming and Lea has not been doing so well since we dropped her steroids. Every morning I wake up and wonder “is this the beginning of the end?”

 Photo credit Rachel Liu Photography

There are days when I can have heartfelt conversations, smile genuinely and laugh heartily. And then there are the days like today, when I can barely keep my eyes dry, and I work hard to avoid human interaction and eye contact.

I have had some sad moments over the past week. Moments when Liv and Lea are laughing, playing, story telling, and singing and I think about how much Liv will miss her built-in friend and playmate. Or when Lea and Keira are making up games in the bath together, laughing and being silly and I think how Keira probably won’t even remember Lea and the amazing person she is. And then I think of the big 5 year hole between Liv and Keira where Lea should be… and how big of a void that will be in so many ways.

I get angry that there is a huge possibility that I won’t get to raise these three girls as I had imagined. Mike and I always get emotional when we see other families with three girls, all grown. That was supposed to be us. The Doran sisters were supposed to grow up together, be teenagers together, raise hell together, and have each other, forever.

I never know when these moments will hit me and the anger and sadness will come on fast and strong. Ordinary things can set me off.

Last week I enrolled Keira in school and the form asked me how many siblings she had. My heart hurt as I clicked on the 2. Will she still have two next year when Keira starts preschool? Maybe. Will I have to change the bio on my website to mom of two? Maybe. Will I be able to go to this concert with my friends in June? Maybe. Will we be going on a vacation this summer as a family of five, four or not at all? Maybe. 

Last night on facebook someone posted a video of a child growing old. You know the ones, where in less than one minute you watch a child enter the world, experience various joyful and not-so-joyful phases of youth, grow up, leave home, go off to school, get married, and have children of their own. Videos like these used to make me cry for different reasons. Now I cry because DIPG statistics tell me that I will never have the opportunity to witness any of that. I have experiences like this every day. Seemingly normal things, are now like a knife to my heart.

Birthday parties are particularly hard. While her friends run around and do “seven” things, Lea stands by my side, holding onto my hand for balance and support as I wonder if she will see seven. Maybe.

For some reason, Lea has been intent on meticulously planning her seventh birthday party. We discussed the theme (beanie boo’s) and the cake (chocolate, of course) and who she wants there, and where it should be. Lea spent one entire morning designing the owl for her “thank you cards.” Then hours more cutting and taping them before she had me write a cursive “thank you” in dark black marker on each and every one. She has discussed the guest list, the menu, the piñata and party favors.

It is so hard to watch her carefully plan this day. A day I want so badly to believe she will make it to. The reality is, I have watched several DIPG children die just one month before turning seven. I have seen the heart wrenching posts from their mothers, who should be planning a party and celebrating their life, but instead are morning their death. I am now “facebook friends” with too many mothers who have lost their children before the age of seven.

 Lea and I meet for the first time, May 25, 2012. Photo credit Melissa Wilson Photography

Lea’s death is a part of my daily conversations. “If Lea’ makes it to next school year, do you have a spot for her? If Lea is with us, we will go to Rhode Island for vacation again… If Lea is doing well we will go back to Florida in April…If Lea makes it to her seventh birthday, you bet your ass it will be biggest birthday party ever.”

All of the sudden, this serial planner lives her life one week at a time, hesitant to say yes to anything on the next page of my planner, and oh, so careful about what I say yes to, as it takes me away from the most important thing.

How is Lea? Lea’s steroid wean meant some serious side effects. Side effects that if we didn’t know better, would have made us think the monster is growing. So we are back on steroids every other day, and hope this well help. She hasn’t been able to go to school this week, or do much of anything. She sleeps a lot, hasn’t been eating and has pain every day in her head, neck, back and stomach. Lack of food has left her weaker and she needs us even more to walk. She has a sedated MRI tomorrow and her treatment on Friday.

Please continue to lift us up in your prayers, tomorrow and Friday especially.

“Courage is fear that has said its prayers.” -Anne Lamott

Keep up with what is going on with Lea and our family on Facebook and Instagram

From scratch

Christa Doran Uncategorized 13 Comments

And every day, the world will drag you by the hand, yelling, “This is important! And this is important! And this is important! You need to worry about this! And this! And this!” And each day it’s up to you to yank your hand back to your heart and say, “No. This is what’s important.” -Iain Thomas

My eyes lit up as I approached the rows of colorful planners at Target. One of my favorite things to do each year is purchase a new planner, pages all white… fresh and clean and ready for a new year. Each year, before throwing the prior years planner away I flip through it, taking the whole year in at a glance. I looked back to where I was one year ago. Thinking back to then, I never would have imagined we would be in this place, dealing with something of this magnitude. The months passed quickly before my eyes as I flipped through the worn pages covered in ink and lead. Then I came to August. The worst month of my life to date. I looked back and tried to pin down the exact date I started to notice the change in Lea. I thought back to our last “normal” family vacation and the alarming changes we noticed in her. And then I came to the day they found the tumor… and the next day when she had the biopsy… and the days after that we spent in the Yale PICU… and the week after that when they told us of her DIPG diagnosis which gave her weeks to months left with us. The feelings of nausea, panic and worry are still so fresh in my brain and it was as if I was back at YALE, in that nightmare yet again. I closed the book unable to go any further through the year, which ended in a blur.

A new year means my oldest, Liv, celebrates a birthday. This year I decided to make her 9th birthday cake (and frosting) completely from scratch. I’ve been on this earth for 38 years and I’ve never made a cake from scratch, but one of the motto’s I currently live by is “there is no time like the present,” and so, I set out to bake my first cake.

I googled “the best vanilla cake” and then “butter cream frosting recipe” and sent Mike to the store with a list of ingredients I had never had in my kitchen before (as well as more butter than I had ever used at once). Lea and I spent the morning of Liv’s birthday together in our pajamas, baking a cake and mixing up frosting.

As I mixed the batter for what felt like an hour (bakers usually have large mixers, I learned) I sort of felt like that cake, being built from scratch. Or in my case, re-built. This experience has completely leveled me. It has forced me to reevaluate my values, what I want for my life, and who I want in my life. It has forced me to re-prioritize and has shown me what is truly important to me. This horrible experience has brought me to my knees and made me fully realize my vulnerability and humanity. Looking back at 2017, there are so many things in that planner I would never say yes to again. Things I would never make a priority again. Things I would handle completely differently. Things I no longer want. Things I want more than ever. 

This was never more clear to me as I filled out a “passion plan” at a strength and conditioning workshop this past weekend. After I rolled my eyes and got over the activity presented to our group, I floored myself with that I frantically scribbled on that paper. What I want now for my life is completely different than what I wanted just six months ago. 

In the past, a messy kitchen, paint all over my kids clothes and my beautiful new barstools, paper-mâché ground into my hardwood floors, and a table full of crafts would have sent me over the edge. Now, I know the importance of experiences and moments… fully present and engaged moments, over a clean kitchen, paint free clothes, social media fame, or the “appearance” of success. In the past, I wondered if three kids was too much, too busy, too crazy… now I beg God to keep me a mom of three girls, and contemplate having another baby if that is not His will.

In the past I would have told myself I was too busy to bake a cake and would have purchased one instead. Now I savor the moments that happen, the lessons you learn and the memories you make when you share things like baking a cake from scratch.

 Livia’s 9th birthday card from Lea

Every day has value. Every day is precious… something that became painfully clear when we were told we only had weeks to months left with our Lea. Those annoying “Make everyday count!” memes that used to make me roll my eyes are now one of my mantras.

Choose to bake the cake rather than answer emails. Choose to sit on the couch with your kids rather than do the dishes. Choose experiences over things. Rather than filling your planner with things that don’t matter… that you don’t really want to do anyways… put yourself and your family first and say yes to the things you really want to do and the people you really want to spend time with.

The greatest good is what we do for one another. -Mother Theresa

Lea continues to bring this community together. Your love for her and for us is mind blowing and I continue to stand in awe of the fierceness of this community. We have experienced such generosity and kindness from friends and strangers and it always makes me so emotional. There are kind, loving, generous people out there. You bless us daily with your gestures and generosity. Last night as I drove home from work I noticed bright blue lights on a home I had not seen before. Those blue lights serve as a reminder to me that we are not alone. We are supported and loved by this community, and it means more than you even know. Thank you. 

Much Love,

Christa

How is Lea? As far as we can tell, the monster is still sleeping. Radiation has taken away it’s size and power and given us our girl back. One of the worst things about DIPG is that you never know when it will start to grow again, and once it does, we know the result. It crushes me to think about. I still hold my breath every morning when I go into her room. I start to breathe again once she tells me she feels good and I watch her walk. She had treatment number four at Dana Farber on January 12 and we return February 1-2 for a MRI and another treatment.

We have cut her steroids dose down to .25/ every other day, which has started to bring down her puffy cheeks and belly, and brought back her amazing personality, sense of humor and feisty nature. Her hair is growing back, and she looks more like herself each week. Her humor is back along her defiance and feisty nature. I have never appreciated it more. 

How are you? I have been in as good a place as I can over the past few weeks. I can keep my eyes dry when Lea talks about when she grows up, or when she turns 12, or when she has a baby… things that probably won’t ever happen for her. I am getting better at enjoy the present with Lea and have been less sad. She is here, she is stable, she is laughing and making me laugh, and I am soaking in every precious second with our amazing girl.

Many of you may have seen this post on USA today that I shared on Lessons From Lea. When I saw that photo I started sobbing. The photo clearly expressed how I feel inside every day, I am just getting better at hiding it. I guess I am getting used to this horrific situation. It’s funny how time does that to you. 

Every night I kiss the back of Lea’s head, right where the monster sits and her hair is starting to grow back and beg God for complete and total healing…. for a miracle.

There is a Paint for Lea fundraiser on Monday, February 19 (President’s Day) at the Clay Date in New Haven. More info can be found on our Fundraisers page. 

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. 

The Most Wonderful Time of The Year…

Christa Doran Uncategorized 9 Comments

…something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor.

-Marianne Williamson

Unlike the Macy’s Santa we saw just one day prior, the Santa at the Jimmy Fund clinic in Dana Farber knew better than to wish us health in the New Year.

I know it’s “the most wonderful time of the year,” but this year I felt much more akin to the Grinch, or Scrooge than my usual festive, merry and bright self, toggling back and forth between anger and extreme sadness… two emotions that now live with me day and night.

Sadness as I browse the Christmas cards and after a few moments hastily type “hope” into the Shutterfly search bar as the gold foiled “merry and bright” cards were burning my eyes. One card came up and that is what I went with. No hours of deliberation as in years past. No side by side comparison. Click, click, done. This years card was a reminder to me more than anyone else. It is easy for people on the outside looking in to say “Don’t lose hope!” But the angry part of me thinks every time “Your child was not given a death sentence by a disease that leaves no survivors. Your family is not a part of this nightmare. You are not the mom who is getting emails of support from other amazing, strong and brave moms who have already lost their children to DIPG… after 9 or 12 months of battling. You are not a mom counting the months left on your fingers, waiting “for the other shoe to drop” and for your six year old daughter to die.” I could lie and tell you that “every day I have a renewed hope…” but I don’t… and so I won’t. I made a pact to be honest to a fault with the story I tell here and so there it is, in it’s ugly glory. The hope on that card is a reminder to me.

As a part of this awful club you certainly meet some kind, generous and amazing people. We have been on a wild ride the past few weeks with Disney, NYC and Dana Farber all stacked one upon the next. I have not had time to write, or cry, or be, or any of the things I usually do to cope with our situation… which might explain in part why I have been in such a dark place during such a joyous time, and why I have so much to share tonight.

Our fun filled trips were like a tiny blinking light working so hard to cast some light on the darkest night. There was still darkness, but there were more moments of joy and happiness than usual. We saw Disney in a way that we never could again, and I am so grateful to Make-A-Wish CT for the incredible opportunity and all they did to make our visit so special and so amazing.

We returned home to find every home in our neighborhood (including our local fire department) glowing with blue Christmas lights to show their support for Lea thanks to the careful orchestration of our dear friends and neighbors. I was still smiling as I approached our side door only to find two enormous boxes of toys from Colin’s Crew with the instructions “don’t open until Christmas!” They were the first two boxes under our tree.

After being home for just three days we were able to see NYC in style thanks to the organization LivFree. We saw the Rockettes, dined at Carmines, stayed at the W Hotel (a Lea fav!) and had brunch and a shopping trip at American Girl. I continue to be amazed by the kindness, generosity and support from friends and complete strangers. There are some really amazing organizations out there, many that started from a place of tragedy, and our family has been blessed to be the recipient of many of them. Thank you so much. It means so much to our family. 

Dana Farber the very next morning was especially hard for me this time. I was unable to hold my tears back and found myself taking extra bathroom breaks to dry my eyes. A children’s cancer clinic where your beautiful child is a patient is one of the very last places you want to be three days before Christmas. The little boy in the infusion bay next to ours was receiving his last chemo treatment. The staff came out with a cake and sang “happy last chemo day….” to the tune of Happy Birthday and I lost it. As I choked backed sobs I found myself wishing that my kid had leukemia. I know leukemia has a 90% cure rate to DIPG’s 0%. I’ll take those odds. But that is not the hand we have been dealt. I shut my eyes tight, kiss the back of her head, right where the monster sits, and pray as they give her back to back injections. I always pray for a miracle. Every single time.

Two days later is Christmas Eve, which is usually my favorite night of the year. A night I look forward to with excitement. This year it was met with sadness, and another round of “Is this our last ____ with Lea?” I meet Lea in the bathroom to do her hair for Christmas Eve and she starts to cry, big crocodile tears rolling down her full cheeks. She asks me through the tears and big staggered breaths when her hair will grow back. She tells me she doesn’t want people to laugh at her head because she doesn’t have hair, and that no hairstyle looks good. When I realize how much she knows, sees and understands I match her tears. I try to convey to her how amazing she is, hair or no hair, through my sobs. I tell her how sorry I am that she has a tumor and that she has to go through all of this. I tell her I would give anything to take it all away. I tell her how proud I am of her, and her bravery and strength through it all. I tell her that her friends and family love her because of how she makes us feel… how funny she is, how much fun we have with her, the conversations we have and the friend she is to us. That is why we love her. And then, I wipe away our tears, do my very best braiding work, and we hug, for what feels like forever, but still not long enough.

Later that night I feel sadness and a bit of nausea as I gently stuff Lea’s stocking, her name stitched neatly in ivory thread. My mind races to next year and I quickly have to slap it back to today. I have many of these moments a week. Moments where I get sick to my stomach thinking about life without her. It is an indescribable feeling to look at your child and know she is dying. To know her body is trying to kill her. To watch as her body fails her, multiple times a day.

I am doing my best not to lose hope, but right now, my only hope is in my great God. I do have hope that He will guide us through every outcome, even the very worst one.

Every blue light, every enormous cardboard box, every small gift, every colorful card, every kind donation, every fund raising effort large and small reminds us that we are not alone. Feeling that support is one of the things getting us through this time and we are so grateful for those that support and stand by us.

This blog started as a way to let the many supporters know how we were doing in a way that felt right, as well as an outlet for my stress and emotions. To hear the reach it has had is incredible. I have heard that Lea and our story has changed some lives, changed the way some are living their lives, made people think and act differently, as well as re-evaluate what is important.

My goal was not to inspire, it was to honestly convey what is going on, but I am so glad that it has. I am glad our tragedy is bringing about some good. Lea continues to be brave and strong in the face of every obstacle, smile sweetly and genuinely, and belly laugh heartily despite being dealt life’s very worst. If she can do it, so can I… right?

How is Lea? Lea is good. She is tolerating her treatment well. She continues to tolerate steroid titration well and we will be attempting to drop another .5 mg this Friday. With this drop in steroids it seems her amazing personality and sense of humor is returning. That has been such a gift for us.

How are you? I am struggling. We both are. Desperately wanting the joy, the hope, the light, and struggling to find it.

What do you need? We certainly don’t need any more owls or art supplies! I am pretty sure you have sent us every one in the US! Thank you for that! Lea can no longer sleep in her bed thanks to all the stuffed animals, and now sleeps on the floor next to them. Kidding of course! Lea received a kindle for Christmas and has been reading faster than we can purchase! Amazon gift cards to purchase more books are welcome, but right now we have everything we need. We will always take more prayers.

What do you want us to pray for?

  • A miracle and complete healing for Lea
  • Hope
  • Peace
  • Patience
  • Guidance
  • That Keira will go the F to sleep every night without raging a war. Amen. 🙂

Breakable

Christa Doran Uncategorized 11 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

“There she is” I thought to myself as I drove Liv and Lea home from school on Tuesday. I could hear her sweet voice from the backseat of the car, and it sounded just as it did BC (before cancer). I smiled and imagined for a moment, my life was not flipped upside down and I was a mom driving her two healthy kids home from school. I love when Lea goes to school and life feels somewhat normal. Picking them up at 3pm feels amazing. Driving home with them chattering and laughing in the backseat makes me smile and I wish it could always feel this good. 

Almost every minute of my day is different now. Everyday experiences have taken on a whole new meaning. Like when I put three pairs of matching fleecy Christmas pajamas up on the counter at Carters and start to cry, wondering if next year I will only be purchasing two pairs. Like when we are climbing the floors in the elevator at Smilow and two women are talking about the stress of the college application process and I hug her close, eyes misty as I wonder if we will ever get to enjoy that “stress” with Lea. Like when I all of the sudden have a limited selection of Christmas cards this year as a card with “merry” or “bright” or “happy” would be a big fat lie. Like how I get angry and jealous when I see healthy, happy families enjoying everyday experiences… like we used to. Like how I used to think three kids was just too much and how much easier it would be if we only had two. I regret every one of those thoughts and plead with God to keep me the mom to these three amazing girls.

Every moment of every day is different because of Lea’s cancer. 

          Every time I see this picture my heart breaks. Lea in February 2016

I get asked all the time “how I do it.” How am I able to show up and smile, and do my job with enthusiasm and energy despite everything going on at home? Imagine a box you would bring a case of wine home in. The box has these cardboard separators for the purpose of keeping each bottle of wine from smashing into another, possibly breaking one or both (the horror and shame!). When I go to work, I slide a divider securely into place, fully immerse myself in what I am doing, and shut the part of my brain off that is always thinking about Lea. In order to do this effectively I had to set boundaries. I asked the Tuff Girl community not to ask about Lea or how we were doing in that space, and for the most part, they have respected this request. Every now and then someone asks a question that feels like a jolt to my system and I feel the divider being tugged away. The worlds collide, the bottles smash, the smile fades, and for those moments I am unable to be effective in my role. 

Their questions are coming from a good place… they have no idea what you are going through…I tell myself as I secure the divider once again. 

Keeping this divider in place takes a lot of emotional energy. This might explain why I usually drive home with tears running down my cheeks as the dark reality of our life floods back into my brain just like the deep red wine that floods my glass once I get home feeling quite broken.

My role as a strength coach is one that helps people realize how strong they are. Almost every single woman that steps into our gym is stronger than she would ever imagine possible. My job is to help her (and him) realize what she (and he) is capable of and fully realize her (his) strength and power. I always knew that we are stronger than we realize and can handle more than we know. 

Our current situation has taught me that the strength and resilience of the human spirit is the same. It can withstand far more than we ever thought possible. There was once a time where I “could not imagine” how I would handle the exact situation we are in, shaking my head no, no, no…. when I would hear about a family with our circumstances. And here we are… handling it. Sometimes it feels joyful, sometimes it feels happy, sometimes we handle it with grace and a brave face… but most of the time it feels like we are slugging through the mud, just trying to get through it, one impossible step at a time. 

Before I had given birth the worst pain I had experienced was a broken bone, a very infected finger, and food poisoning. That was my worst. According to me, the most I could handle. Then I had three children without pain medication and set a new standard for what I could handle. I found a new “ten” on my pain scale. 

As we go through life’s trials and tribulations, we are only aware that we can handle what we have proven we already can. And then something more awful, and more painful comes along, and we handle it. Again and again, we test our strength and resilience and again and again we (eventually) rise. We are stronger and more resilient than we realize. I hope you never have to face a situation like ours. But if you do, or if you are, know that you are stronger, braver, more powerful and more resilient than you realize. Keep getting up and moving forward, one unbearable muddy step at a time. 

Updates:

How is Lea? Lea received her second treatment at Dana Farber on Friday and continues to amaze us with her bravery and resilience. She is tolerating the treatment well and we were even able to go down a wee bit on her steroid dose. We go back to Dana Farber right before Christmas for her third treatment and she will have another MRI in January to see what the tumor is doing. She has been walking without help and has been (mostly) in good spirits lately. I feel like her strength and coordination is improving, which comes with mixed emotions.

She is in school two days a week right now and we love that she gets to be a first grader for a few hours a week. We enjoy and savor all the moments. 

Many ask if Lea is “excited” for our upcoming trip to Disney (THANK YOU MAKE-A-WISH!) or Christmas. Lea doesn’t get excited anymore. The sparkle and shine has faded… the joy in her soul is gone. This is so hard for us as Lea used to be a spark… a live wire in the room. Now her flat affect and monotone voice is her new normal. 

How are you? One day at at time and one hour at a time is how we live. I am so thankful to have Lea with us for Christmas. I have moments where my thoughts go dark and I have to shake myself back to the here and now. I have days where I feel completely hopeless. I have days when I have so much anger towards our situation and all the “stuff” that goes along with it. One wrong question asked with good intent, one “puppy dog” look sets me off and I turn into this bitter and angry person. I always let the feelings in, I let them brew and simmer and many times boil over. I cry. I write. I hit things. I lift heavy weights. I push my body hard. I drink some wine. I pray. And then I feel better. I have been diligent with self care as I know I have to care for myself throughout this process. I get a massage every other week and get to Tuff Girl at least three days to train hard. I go out with my friends at least twice a month. I love this fresh perspective, newfound strength, and sense of self… it just comes at too high a cost and I would send it all back in a heartbeat if it meant Lea would get to grow old. I have this constant fear that something bad is going to happen to Mike or Liv or Keira. All the sudden life seems so fragile… so vulnerable and breakable, just like those wine bottles. 

Upcoming Fundraisers:

Thursday, December 6- My family is putting on a macaroni and meatball fundraiser at the Dante Club in West Springfield tomorrow from 5-8pm. You can get tickets by calling my uncle, Don at 413-330-7399. $20 for adults and $10 for kids over 6. 

Saturday, December 9- Yoga for Lea 1:00 this Saturday at The Breathing Room in New Haven. 1-2:30 and family class from 3-3:45. $25 suggested minimum donation per class. 

Month of December- Basket Raffle at JH Hair Design- All month long the amazing women at JH will be selling raffle tickets for $25 each. One basket is filled with amazing goodies and valued at $600. They will also be doing a drawing for a runner up. Stop by to purchase tickets or get some hair love from these talented women. 

Thursday, December 14- Jingle Bell Singalong with Musical Folk at 4:30 & 5:40. Suggested donation per family is $15. 24 Selden Street, Woodbridge, CT. 

 Photo credit to the amazing Rachel. Thank you for this incredible gift. 

A New Normal

Christa Doran Uncategorized 14 Comments

You are braver than you believe, smarter than you seem, and stronger than you think.

Winnie-the-Pooh

Thanksgiving morning we sat cuddled up on the couch watching the parade. The turkey was in the oven cooking, I was still cozy in my jammies with fresh coffee in hand, and my girls were all around me. Thankful.

In years past I remember tearing up over the St. Jude commercial that comes on during the parade. You know the one… Marlo Thomas comes on to remind us to “be thankful for the healthy kids in your life, and give to those who are not….” Every year I would do just that. Thank God for His many blessings including my three healthy girls. This year I was on the other end of that commercial. “Those who are not.” Liv noticed my tears, so I made my way to the bathroom to clean myself up. Not today. Today, you hold it together. 

I couldn’t help but be thankful for Lea and our Thanksgiving at home with her. She was not in the hospital. She was not hooked up to a breathing or feeding tube, like many DIPG kids are in their last days and weeks. She was with us. She is with us. 

The day after Thanksgiving we packed into the car to cut down our tree, much earlier than in years past. “Don’t put off until tomorrow what you can do today.” That is a phrase I am living by these days. Do it. Today. Wear it. Burn it. Drink it. See it. Visit it. Visit them. Call them. Hug them. Love them. Today. You have no idea what tomorrow will bring. Do it today. 

While stringing the lights on our Christmas tree I said what Mike and I had been thinking all day… “This might be our last Christmas with Lea…”  The words felt like a punch in the gut. 

We carefully string the lights while Lea naps and when she wakes up, we hang our ornaments. I have a few favorites I carefully position in the perfect spot while the girls put every ornament possible into the smallest space available to them. (Insert eye roll) One of my favorites happens to be the metal miracle ornament I purchased years ago… this year, like many things, it takes on a whole new meaning. 

I pull out our family letters. There are 5 of them. M for Mike, C for Christa, L for Livia, L for Lea and K for Keira. I start to cry as I hand them to the girls and Mike. My mind wanders to next Christmas… what if I pull these letters out and she is gone? I decide to stuff it down, refill my wine glass, turn up the Christmas music, and enjoy the moment. She is here. 

When I became a mom in January of 2009, like many new moms, I struggled with my “new normal.” I found the job so very challenging, and looked at moms of two, three and (gasp!) four in awe thinking “How do they do it?” Then I had number two, Lea, two years later, and quickly found an overwhelming new normal. Then… surprise! Keira is born three years after that. Yet again, I found a new normal as a mom to three amazing girls under the age of 5.  Today, I can’t remember what my life was like before I was a mom. I find this feeling both comforting and upsetting. Knowing  and experiencing that with time, we adapt and find a new normal means if Lea dies the pain will eventually lessen… but it also means that I might forget what life was like with her. I struggle to even remember what life was like BC (before cancer) even though it was only four incredibly long months ago. 

I can’t look back at what our life used to be. It crushes me and renders me incapacitated. I can’t look forward at what we are not yet facing. It paralyzes me. Both prevent me from living fully present and engaged in the moment. I will continue to fight to find joy in our new normal, and whatever that looks like down the road. 

Lea is the same. No better. No worse. She rocked climbed thanks to the amazing staff at City Climb this past weekend. What an amazing moment for us to watch. We head to Dana Farber on Friday for treatment number two of the clinical trial. 

I am in a good place most days these days. I have moments, like on Sunday night when Lea pulls up a video of herself from last Christmas, all sparkly and perfect, face, voice and body full of light and joy. I feel so sad for what we have already lost. I continue to mourn the loss of that amazing girl. She is not that same person anymore and I miss her so much.

Lea one year ago

That same night I read about another child with DIPG dying. Twelve months after his diagnosis. I feel some of my hope for Lea die along with every child who loses the battle with this monster. I quickly count the months on my fingers… five. I have no idea how many days we have left with her, but I am determined to find joy and be present in each and every one of them, as I continue to be reminded how resilient the human spirit is. How much more we can handle than we think we can. How quickly we are able adjust to a new normal. I find peace in that, and in the fact that time heals… I hope.

Ways to Help:

Upcoming Fundraisers

December Events

Pasta Night Fundraiser– Thursday, December 7 from 5-8pm at the Dante Club on Memorial Ave in West Springfield. Tickets are $20 for adults, $10 for kids over 6, kids under 6 are free. Please contact Donnie Felix at 413-330-7399 to purchase tickets. 

Yoga For Lea– Saturday, December 9. 1-2:30pm round robin adult class. All ages family class from 3-3:45pm.  Breathing Room Yoga Center at 216 Crown Street in New Haven. $25 suggested minimum donation. 

Blow-drys for Lea– Sunday, December 24 from 10am-2pm at Meche Beauty Lounge. Book here or call Meche today and book your appointment! 203.626.9963

Please Pray

For healing.

For a miracle.

For peace.

For the ability to find joy.

For patience. 

Smiling Through The Suffering

Christa Doran Uncategorized 4 Comments

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 that 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

Laptops open, papers askew, Bridgett and I sit perched on the clear purple chairs in the back of the gym discussing to do lists, upcoming events and what felt like one hundred other things. At least. We went down the list…. check, check, check. “Oh and what about that email we got about your speaking at that event?” “It will depend on timing… when is it again” “April.” “That is the month my daughter is supposed to die.” I say the words matter of factly, not believing they are coming out of my mouth. Our fingers immediately stop typing, our minds stop racing and we lock eyes, which are now quickly filling with tears. We hold hands and take a few breaths together to recover from what I just said. “Ok then, so put me down as a maybe depending on what is going on with my life….” Check. Check. Check.

As a parent you are fully aware that you could lose a child… you just never think it will happen. You imagine it, then tell yourself no way, I cannot imagine… and throw a prayer of thanks to the Big Guy upstairs for healthy kids and a happy life. Or at least I did. 

Mostly it is loss which teaches us about the worth of things.

-Arthur Schopenhauer

Then comes the pain and suffering. The worst thing you could imagine actually happens, and you have to deal with it. Because really, what else are you going to do? I have a business, eight employees, three children, a husband, a dog, and a home… all things that need my love, care and attention. Want to or not (and there have been many days I have not wanted to) I have to face each day as it comes. One day at a time. One foot in front of the other. 

I get asked a lot “How are you?” and “How is Lea?” (Those are my least two favorite questions to answer these days.) 

I am as you might imagine. Caught in what feels like a nightmare. The days vary from really bad to not so bad. There are times when I feel sick to my stomach over our situation, swallowed in sadness, and so very scared about the future and what it holds for our family and Lea. There are joyful and happy moments within each day, and times when I am smiling… and mean it. Lately I have been smiling more… genuine, real smiles… and that feels good. 

Lea is no better, which is worrisome, as they told us our kid might return “back to normal.” Not sure what would be harder. Never having her back, or having her back and then losing her again. Her temperament seems different these days. Every morning when I get her out of bed I hold my breath as I check her gait and balance. A Masters Degree in Occupational Therapy is certainly coming in handy these days as my trained eye quickly scans her balance, coordination, dexterity and strength. I let out a sigh when my checks are done and I realize she is the same as she was the day before. This monster moves fast. I saw it with my own eyes when overnight she could no longer walk on her own. We have no clue when the monster will strike again. She is two weeks into the clinical trial and is not showing any adverse reactions. We won’t know if this trial is working until the effects of radiation wear off, whenever that is. No one knows. Every kid and every case is so different. We will head back to Boston next week for injection number two. 

We celebrated Mike’s birthday ten days ago. Lea shuffled over to him, smiling with pride, and presented his birthday card. The first thing that came to mind was if this was the last card she will ever draw him? And will I even get a birthday card this year from her on my birthday in July… the month we started noticing all those changes. 

Just a wee bit later that day I scroll through my phone to find some pictures of Mike for the “I am a good wife” birthday post. The one where I post pictures of our happy family and say nice things, like how much I love him (I do) and what a wonderful man he is (he is). I stumble across a video I had never watched of Lea, taken in February when she was still all sparkly and joyful, back when she still had the light in her eyes and the joy in her soul. I can’t apply the right filter through my tears as I post the pictures of Mike and our family. But it doesn’t matter. Lea’s beautiful, sweet face smiles back at me through the screen. I miss that face so much. The steroids that keep the swelling down in her brain also make her unrecognizable. The other night while she was sleeping I put my hands over her puffy cheeks and there she was. My girl. Just as she was before. Or at least on the outside.

She has been going to school on Tuesdays and Thursdays. I love that she gets to be a first grader and do normal six year old things. Today at school meeting Lea was a part of the art project her class shared. As she sat on the floor with “her class,” her photos flashed on the projector and instantly Mike and my eyes filled with tears of joy. It was such a gift to see her up on that screen as a participant.

When people know they are going to die what do they do? They travel. They experience. They work less or not at all. They visit and spend quality time with loved ones. Things like overtime hours, “the daily grind,” the image you are portraying on social media, the number of likes, comments and followers you have, as well as what others think about you seem very small and insignificant. Lea’s diagnosis teaches me so much each day. Whether she lives or dies I made a promise to myself to continue to live the rest of my days, however many are left, like this. I wish I could change our situation, but I can’t. So I will choose to let all of the pain and suffering change my values, perceptions, priorities, goals and dreams for the better, and I will keep doing my best to smile through the suffering. 

If Lea becomes another DIPG statistic this will be her last Thanksgiving with us. Every holiday seems that much more special, and so very bittersweet. This holiday, even in the midst of suffering, I have so much to be thankful for. The love, kindness and extreme generosity shown to us by so many, friends and strangers alike, has moved us deeply. Our family and friends continue to stand beside us and hold us up. Thursday as Lea sits next to us at the Thanksgiving dinner table, my smiles will be real. 

November Events

Owl by LEA T-Shirts are available for purchase until November 26 (that is FIVE days away!).  Order your Lea OWL tee here

December Events

Pasta Night Fundraiser– Thursday, December 7 from 5-8pm at the Dante Club on Memorial Ave in West Springfield. Tickets are $20 for adults, $10 for kids over 6, kids under 6 are free. Please contact Donnie Felix at 413-330-7399 to purchase tickets. 

Yoga For Lea– Saturday, December 9. 1-2:30pm round robin adult class. All ages family class from 3-3:45pm.  Breathing Room Yoga Center at 216 Crown Street in New Haven. $25 suggested minimum donation.