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love for bruce | priscilla Baierlein photography {lexington, ky family photographer}

for-the-love-of-bruce-dipg-lexington-ky-lifestyle-family-photos-by-priscilla-baierlein

love for Bruce | love and laughter through the darkness


It was a cold December morning. I had just gotten Steffen to school and sat down to open my email. I love email days that include a session request. It may seem silly, but I always do a little happy dance in my chair and another when I get a booking. :) Each one brings me so much joy. I opened the new session request from a lady named Robin and read such kind words about my work and about how she was drawn to it. Sometimes you know instantly this will be someone who you'll connect to. As I read further, my heart sank...

"We are searching for a very special photographer to capture the special moments we will cherish with our dear 5 year old son, Bruce. Last week, Bruce was diagnosed with a rare, inoperable brain stem tumor called DIPG that is resistant to chemotherapy, and tragically has a 100% mortality rate. Bruce’s life expectancy is less than 1 year. We are shocked and heartbroken at this sudden diagnosis. One way we have decided to cope is to invest in quality photography to document Bruce’s life. We have never used professional photography services, and I have realized that being behind the (iPhone) camera has resulted in my absence from most of our family’s photos. I would like to speak with you over the phone to discuss this further. I want as many pictures of Bruce as possible. Bruce has two brothers, jack (11), and Fred (1)."

Childhood cancer. My worst nightmare. Isn't it everyone's? You see, as I was reading her words, I imagined my little six year old boy. I imagined if it were him. I imagined if I were Robin. As a momma, I imagined her pain. I breathed in the brutal gift of life. I thought of my own niece, whom I had never met, that was taken by cancer. I imagined what these sessions may look like. I wondered if I would be able to do their journey justice. I, selfishly, worried I wouldn't be able to handle it emotionally. What I never imagined was exactly how moved I could be by one family the first time I stepped foot into their presence, even in their darkest days. What I never knew was how much love one family can give out into the world, even at their lowest. What I couldn't have known before meeting him was how much joy and laughter one little five year old could bring to everyone touched with his presence. That I would have the honor of photographing a Jedi, knight in shining armor, and superhero all rolled into one...who just so happens to give the best hugs in generous amounts. 

The first time I met Robin, Patch, and Bruce, was shortly after our email and phone call. After a routine follow up they discovered fluid had been building and making his symptoms worse, he would soon have his beautiful red curls cut and a shunt placed. I was met at the door with the warmest hug from Robin. With everything that was happening, they were able to bring joy to that little room. They snuggled and laughed with Bruce. With a camera in their faces, in a room they never imagined they'd be in, during so much grief and fear, they were able to love and be joyful right there in that moment.

Robin and Patch have a true gift of connection. They each have such wit and humor and this true gift of making you feel welcome, loved, safe, and seen. During something so unexpected, so tragic, they brought joy into that hospital room. Somehow, even in the middle of devastation, I am filled with joy when I am near them. They are fighting for Bruce...not just his life...but also his joy...his dreams...and a bit of normalcy. The same for Jack and Fred. They are making every day count and filling what they can with love and joy, while dealing with their own pain. I am certain, while in their home, I am surrounded by true warriors.

Since our first meeting Bruce has gone through surgery, radiation, and a clinical trial, he has gone to Disney, met big screen superheroes, met the Nutcracker, been knighted, had a sleepover at a castle, been a part of a team from Star Wars, became a police officer and a fire fighter, blasted his brother in a nerf war, caught his first fish, danced, played in his playhouse, jumped on his trampoline, and been loved by people all over the world . Shortly after our last session they found out that the clinical trial they had been flying to New York for hadn't yet changed the tumor, but, thankfully, it hadn't grown. On their facebook page (Love for Bruce), where they keep everyone updated and raise awareness of DIPG, Robin posted this after the scans...

"We would love for this scan to have shown that the tumor is gone completely - however that would have been unrealistic and atypical for the expected course of the disease. 
We do feel relieved that the cystic component of the tumor has not worsened, and we are grateful to have confirmation that Bruce’s VP shunt continues to function properly. 
There is unfortunately no correlation between imaging and the onset of progression. This MRI does not rule out that progression could occur at any moment. Progression is random and merciless, and we fear it every day".

That was posted on May 14th.

On June 2nd they posted this...

"On Monday morning Bruce woke up with noticeable worsening symptoms. Bruce’s oncologist conducted a neurological assessment and confirmed the decline. The symptoms came just as suddenly as when he was first diagnosed. Bruce has become less coordinated, and his speech has slowed dramatically. 
Yesterday, Bruce had an MRI. Although Bruce’s tumor was stable just a few weeks ago, it has begun to grow again. We are so thankful for the time we had with Bruce since his symptoms improved after radiation - but we wanted more time. Despite the fact that we anticipated that disease progression would likely occur if the clinical trial was not effective, the news is nonetheless shocking and we feel caught off guard. 
It is no longer safe for Bruce to take the clinical trial drug ONC201, and Bruce has been removed from the trial. Different tumors can respond differently to the same intervention, and we are hopeful that it will be effective for other children. 
With the help of Bruce’s oncologist, we will be considering other clinical trials and treatments. Because Bruce has already received the maximum safe dose of radiation within this timeframe; further radiation treatments could potentially be very harmful. 
Once DIPG tumors begin to progress, no treatments have been proven effective to stop or slow the growth. The tumor will likely continue to grow, and Bruce’s symptoms will progressively decline. 
There is no way to know precisely what the progressive stage of this cancer will hold for Bruce. The prognosis at this point is weeks to four months. The rapid onset of Bruce’s initial and progressive symptoms is worrisome that we may have even less time. Our highest priority is preserving Bruce’s comfort and quality of life."

There are simply no words. How could words be put to any of this? I know they will continue to do as they have done...make each day as full of love, laughter, and joy as they possibly can for their boys. Continue being the super heroes they are, even if they feel like the furthest thing from it. They will show up when they can and rest when they can. They will fight for each other. They will be surrounded with love through every step because when you open your heart as they have there are a lot of people who love you and see all your beauty. There is beauty in their love and in their fight. There is beauty in the laughter and joy that explodes from Bruce. There is beauty in Jack's lego building and Fred's admiration of his brothers, in cartoon snuggles and family breakfast making, jumps on the trampoline, and slips down the slide, in swinging, and in the tears. There is some kind of twisted beauty in the pain that surely consumes them. Perhaps that beauty...that love...is what will move them forward and take them through each day. On the days that all the beauty seems faded and all the laughs are quiet, they will somehow show up the best they can  (sometimes that my be in the form of rest and tears and others it may be in the form of cuddles and others in laughter) for their boys and each other...because...that's just what superhero warriors do.

Hug your babies tight, my friends. Hug them so tight. Robin, Patch, Jack, Bruce, and Fred...I love you and am so thankful to have you in my life. Also, if you want to know how funny they are and how welcome they make you feel, this is a legit question I texted Robin, "Should I call Patrick in the blog post Patch, Pat, Patrick, sugar daddy, or....?" Well, I'll save the last one.

So much love,

Cilla

because you are so loved.

Hi, friends! It has been so long since my last post and I miss you immensely. Over the last...oh...seven years, I have tried with all my might to blog on a regular basis and I've promised the moon and stars. Today, I will promise this, I want to write. I think of all of you often. I am going to take it one post, one day, at a time. Here is my love for today...

Some of you may recognize the beginning of this from the newsletter on my last birthday. Consider this my mission statement. 

I always thought "by the time I'm 40 I will have it all figured out". Now that 40 is ever so near I am letting go of that. I don't want to have it all figured out. I want to learn and grow and heal. I want to live with grace. I want to let go of perfection. I want to laugh and love loudly. I want to breath and hug slowly. I want my eyes to always be open to the beauty and heart ache of life. I want to soak every bit of it in. I want to dance in my kitchen. I want to say yes to what's important and no to what isn't...and I want the courage to know the difference. I want to use every single fall along my journey as a chance to grow and heal and learn the deep lessons that only the falls can teach. I want to know that my unique sensitivity to life is never a weakness, even when it feels like it's a heavy burden to bare. I want to dip my toes into the ocean as much as I can. I want to collect all the seashells I can carry in my hands. I want the sand to find it's way into every nook and cranny of my car, my towels, my hair, and anywhere else it tends to find because it means I was there. I didn't worry about the mess...I worried about the joy. I want to sit alone with God every morning before the sun even rises. I want to sing even though I never seem to know the right words or have the right melody. I want to walk and run and hike because I have legs that will carry me. I want to cry...I want to cry every tear that needs to escape my eyes because tears mean I feel and feeling means I am alive and I am human. I want to hold hands. I want to witness the majesty of God's creation ALL around me, in all the ordinary moments because God created every bit of it...and created ME. I was worthy of creation. I want to run through the sprinklers. I want to embrace my curly hair and my thighs. I want to wear the swimsuit. I want my life to be dictated by joy...not anxiety...not fear...not depression...not trauma...not worry of what others may think or the need to please...not unhealthy food choices. I, also, want to eat the damn cake because every now and then we need cake in our lives people. I want to blow out all the candles and make all the wishes on shooting stars. I want to kiss. Oh how I love kisses. I want to dig in my garden and eat fresh tomatoes and strawberries before they ever make it to the kitchen. I want to love the world the best I can and I want to love my people with fierceness. 

My best friend likes to remind me that on our last day of elementary school (for us that was 4th grade) I cried and said "but things will never be the same". What I didn't realize then was the same is true for every single day of our lives. This day will never be the same as the day before. This too shall pass. Life will continue to move quickly and things will continue to change. Time, like all the best things in life, is bitter sweet. It gives us life and love and moments that we will always cherish, but it also takes them away. My sweet little boy who I can still hold in my arms will, hopefully, one day be too big to pick up, will no longer ask for "night night tickles" or for "one more minute". The spins and kisses and hand holding I get from the one I said "I do" to are not guaranteed for tomorrow. The only choice I have is to love. The only regret I don't want is the one that says I didn't love enough. 

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Why? Because I am already loved. YOU are already loved. We are loved for our imperfections, not despite them. Each thing that makes up your life...my life...each tear, each heart ache, each fear, each worry, each mistake, each joy, each laugh, each struggle, each trauma, each beauty filled, breath taking, brutal..soul stomping..awful...thing in your life and my life...is just another color of who we are. Sometimes it may look messy up close, right in the middle of it where all the noise is.  Some days it will feel dark and lonely and like there is no color left in the world and you'll feel like you can't breath. Some days you'll be filled with so much color and light and beauty that your heart will nearly burst with joy. Some days we'll feel lost. Some days we'll feel content. When the clutter clears, and the dust settles, we will look back and see the artistry in the colors...the artistry in the dark and in the light...the artistry in our becoming. Not becoming who society or our fears tell us we should be. Becoming the one love and life has made us to be. Sometimes full of happiness...sometimes full of darkness...full of joy...perfectly imperfect humans. Loved. Love. 

The words "everything happens for a reason" use to roll smoothly off my tongue. Now, I hesitate. I hesitate because I've seen childhood cancer and I know I cannot look at those parents and say those very words. What I do believe is this...there is always love. In that love...there is beauty. Beauty isn't always light...love isn't always easy or even visible. Beautiful, awful, heart wrenching, things full of life and purpose can come from the darkest of days. We live in a broken world full of pain, and at the same time, we live in a joyful world full of beauty. Each make up our unique painting that can be used to bring more love into the world.

My purpose is this...to use my dark...to use my light...to use my sadness and fear...to use my happiness and joy...to use my trauma...to use my life...to use my love...my arms...my voice...my unique painting...my camera...to love the people in front of me...and to remind them they are loved.

So much love,

Cilla