The power to find a song that speaks to your soul

One of Bryanna's favorite song is Fireworks by Katy Perry! When she was the sickest while on Ecmo (lung and heart bipass machine), she would respond to Fireworks. She would squeeze our hands, blink her eyes and her blood pressure would go up. When she would go back for her IT chemo, we would play the song, when we were in our kitchen making dinner, in the car heading somewhere, cleaning the house...just being a family and living life - Bryanna loved this song.  Somewhere along the way, Bryanna had started to grow up. She went from being the cute and cuddly silly little girl who loved Disney Junior to preferring the Disney Channel shows, listening and knowing all the lyrics to Taylor Swift songs and loving Katy Perry. I remember when the song Call Me Maybe came out. We had just moved to Maryland from Massachusetts, and Bryanna was in Kindergarten. She LOVED that song. That song was her JAM. Which of course meant that we were absolutely going to listen to that song anywhere and everywhere we could. So, one day we went to a local park and just as we arrived, Call Me Maybe came on the radio. The park was empty, so I opened the windows of our car and cranked the radio up. Loud. Bryanna, Evey and I got out of the car and had the best silly dance of our lives. We sang that song at the top of our lungs. We danced until we couldn't spin and twirl anymore. And just at the end of the song, a car pulled up staring at us like we were absolutely crazy. We were crazy - for that song, for dancing, for just being silly, for each other, for life. 

To have a song that touches your heart - that touches your soul is nothing to be shy about. Songs that speak to you help you get through whatever battle you may be fighting. They speak to you when you need to hear those words the most. They sing their melody to you when you need to lose yourself in that moment the most. Songs...or even music may seem so trivial in the scheme of life - but really they are so powerful. Evey and Liam cannot sleep now without piano music playing softly in their rooms. We started that two years ago after trying to get past the trauma of our house fire, the trauma of being woken up in the middle of the night and getting outside as fast as we could. The trauma of losing everything (except miraculously the kids' lovies). Piano music helped calm the fears that the shadows brought. Piano music filled the darkness with love and peace. Piano music helped Bryanna, Evey and Liam sleep through the night. Now, piano music is helping Evey and Liam fall asleep knowing that they have a special routine that they enjoyed with Bryanna that is helping them now. They know that Bryanna loved that same Piano music that they love every night. It calms their fears. It brings light to the darkness, it shows them that we care. They see that we take the time to put music on no matter how tired we are. They see that I make sure that the sound is just right, and the songs playing are just so. They know that Bryanna would have been happy. They are trying to find their place of comfort, their place of happy, their place of calm in the sea of quite and darkness. The one thing they tell me they know, that they always feel, and that they like is the love that they feel. The love from us, the love from Bryanna, the love of the every day special touches like music. 

When Bryanna responded to Katy Perry's Fireworks, it brought so much hope to us. She actually responded to Fireworks and when we talked about the trip we were hoping to take with the Make a Wish Foundation to Disney's Animal Kingdom. Those moments brought an indescribable feeling to us. It was hope mixed with sadness. It was love wrapped around the desperate thought that we would do anything to make her better, yet there was nothing that we could do. We found the right team of doctors and nurses, techs and staff...yet there was nothing more that anybody could do. That feeling of desperation that you see in parents that are losing their child in movies - that feeling of being on the brink of doing something crazy and drastic with the hopes that it would save your child's life. I understood that feeling - no, I would never have done anything crazy or bad. That would have only have hurt Bryanna and the rest of our family. But, I still know that feeling of being desperate to find anything that will help her improve - that feeling of hope when she shows improvement and that feeling of absolute despair and pain the moment that I knew that we had to let her go. I remember everything as if it was an out of body experience. It's weird how much of the three months that she was admitted to the hospital, that I remember in detail - yet I can't remember what I had for breakfast yesterday. 

Bryanna's subtle responses to Katy Perry's fireworks gave us so much hope. It showed us she was still fighting. She had strength, she had fight and she was showing that to us. Someday, I will write a letter to Katy Perry thanking her for giving Bryanna those moments, for giving her a song that spoke so deeply to her, that touched her soul. I think it is important for her to know how powerful her music is, and how it truly does touch people so deeply. Even spiritually. 

The past few days have been rough. We think about Bryanna so very much these days. Not a day goes by where I don't think about Bryanna a gazillion times. Every day the kids tell me how much they miss her, how much they want to see her.  Liam wants to go to the hospital to see where she was. He wants to see her doctors. Maybe someday. But for now, we have to find our song. We have to find that one that touches our soul and gives us that strength to fight through this loss - to get through each day. As Katy Perry sings "Do you ever feel like a plastic bag drifting through the wind wanting to start again" - Some days, that is the best way to describe how life feels..Not in a depressed, can't get out of bed kind of way, but trying to navigate life without a big part of me, without the missing part of our team, of our family...with a hole so deep and an emptiness that just can't be filled at the forefront. So yes, sometimes I feel like I am just floating through trying to figure out life and making sure that Evey and Liam know that we are here for them, that they matter and are loved...but feeling so lost in this huge world. But just when I feel like that, I think about what Bryanna would have said or done in certain situations and can't help but smile and be encouraged when I think how she sang and danced especially to this particularly powerful part of the song: 

"...You don't have to feel

Like a waste of space
You're original
Cannot be replaced
What the future holds
After a hurricane
Comes a rainbow
Maybe the reason why
All the doors are closed
So you could open one
That leads you to the perfect rod
Like a lightning bolt
Your heart will glow
And when it's time you'll know

You just gotta

Ignite the light

And let it shine
Just own the night
Like the Fourth of July

'Cause baby, you're a firework
Come on show them what you're worth
Make them go, "Oh, oh, oh"
As you shoot across the sky

Baby, you're a firework
Come on let your colors burst
Make them go, "Oh, oh, oh"
You're gonna leave them all in awe..."

After a hurricane comes a rainbow - we will find our rainbow. Somehow, we will try to find a rainbow in the smallest things each day.  Evey colored a rainbow and we put it on her wall by her bed. That rainbow gave her the courage to sleep in her room tonight. That rainbow reminded her of Bryanna, and that Bryanna would have loved it. She fell asleep quickly, next to her rainbow, thinking of Bryanna and being comforted by piano music. She is finding her song. 

Bryanna's Love

As we try to move forward with life without Bryanna, we decided shortly after she passed to share her love with others as much as possible. Bryanna had a contagious smile and though she didn't like to be touched - she touched the lives of so many people around the world, even today. So we decided to create a foundation where we give snuggly stuffed animals to the kids fighting the fight on hemonc, CICU and the NICU - all places that she stayed for extended periods of time during her fight to survive. We asked our daughter, Evey, what we should name it and we got 'Bryanna's Love'. We want this to be something that we as a family can do together as we move forward in life - something that the kids can do while growing up knowing that they helped other kids in honor and in memory of their sister. Something that we can all be proud of...something I know that Bryanna would have loved. We are also extending this by collecting donations of soft blankets for families that are by their child's side during their stay. All of these  made a huge impact on us, and so we just want to give back. We had our first stuffed animal drive two weeks before christmas - and in just two weeks, the response was overwhelming. We got over 300 new stuffed animals that we were then able to donate directly to the kids on Hemonc/NICU/CICU at childrens national hospital in Washington DC, where Bryanna was treated. We are going to make this an annual drive in which we will donate around her birthday on July 9th. The idea is that the donations that we get bridge a gap during the summer months where the donations from christmas are depleted. 

However,we will always except new, clean stuffed animals with tags at any time at our PO box. We do ask that the donations be new with tags or in the packaging as these will be going to very medically fragile children who cannot be subjected to any dust, pollens, animal fur, bacteria and the list goes on. We truly appreciate all your support as we spread Bryanna's Love to the children battling the toughest battle of their lives. We hope to give them even a moment of snuggly love and smiles, like Bryanna was given so many times during her 3 month battle. 

We will be starting our next campaign (which will be our annual campaign) at the end of April and will keep you posted about the details. In the mean time, we will always accept donations at our PO Box (PO Box 448 Burtonsville, MD. 20866) year round! Please feel free to check us out on our facebook page (https://www.facebook.com/BryannasLove/)! We would love it if you could help us spread Bryanna's Love!  
                                      
 Please feel free to send donations to:
                                        Attn: Bryanna's Love   PO BOX 448, Burtonsville, MD. 20866


We have recently partnered with a wonderful foundation call A Moment of Magic - Their mission is to bring joy to kids battling cancer, one princess at a time. We are working with them to coordinate visits to the kids on hemonc at Childrens National as well as to share Bryanna's love through donations of snuggly stuffed animals to the kids that they visit at other hospitals around the nation. A Moment of Magic is such a wonderful organization of which, I know for a fact would have brought so many smiles to Bryanna during her struggles. I am so happy that we have connected and look forward to the amazing things we will accomplish as we work together in supporting both of our causes. We are small and we are a young but I know we can touch the lives of so many kids!

They just gave a beautiful shout out to Bryanna's Love on their facebook which made us so happy and feel so loved. Our mission is to spread Bryanna's Love to as many kids and families as possible. In doing so, we are going to be starting up another campaign for donations of stuffed animals (new with the tag on) as well as soft cozy blankets for caregivers to give them a little sense of comfort while living at the hospital. We know first hand that those simple touches make a big difference. 

I offer no judgment, just an endless supply of hugs, love and understanding.

When you go through the McDonald's drive through at the end of a busy day and you pay for your food - you are presented with signs on the window asking for your donation for the Ronald McDonald house. When you go to Wendy's you are asked if you want to donate a dollar and get a key tag to redeem a JR Frosty at any time. When you watch TV on any given day, there are commercial after commercial about chemo therapy, cancer, St. Judes and the list goes on. The pictures and videos always depict a happy smiling child either holding pom poms or walking down a hallway, or sitting in a beautiful outfit with a headband or hat on.

When we were living at Childrens National Hospital, day after day, night after night for three short yet long months, we were always surprised that it was nothing...and I mean NOTHING like those commercials. The kids on hemonc were too sick to be playing in the hallways. They were too sick to be running around shaking pom poms. Most kids didn't wear their regular clothes or jammies...they just felt too sick.

When I go through the Wendy's drive through and am asked for the millionth time if I want to purchase a key tag - I just want to cry. I want to scream and show that I am a cancer mom and those key tags didn't help my baby survive. I can't buy her one of her favorite treats from wendys or McDonalds. I can't buy her a strawberry milkshake with extra cherries and watch her get whipped cream all over her face trying to dig the cherries out. I can't watch her excitement when I pull up to Wendys and order her one of those chocolate JR. frosty's.  I realize that I get a little mad and I think to myself that cancer is not all the pretty, happy, cute and chubby faced kids that the commercials show. Yes, the steroids and chemo more often than not do make kids gain weight - not Bryanna. Yes, there are hopefully good days where kids will want to and be able to play with their toys, their pom poms and their friends, and yes there are times when hopefully those kids will be able to run down the hall and laugh and shriek with excitement that they made it down the hall so fast. But that was not the picture we saw. Not with Bryanna and not with the kids on hemonc at Childrens. I understand that in order to raise money for the critical research required to save the lives of these very children, organizations have to show a pretty face - they have to show what the average people want to see. That's what I understood cancer to be before it gave us a brutal wake up call. That's what seemed normal. Please don't get me wrong - I have the utmost respect for all of these organizations, researchers, doctors, marketers...everyone. They are saving lives. But it doesn't make it easier.

I remember one morning during rounds when all the doctors were talking with me about Bryanna's progress, her treatment and how difficult it was. I remember that a little boy much younger than Bryanna, maybe somewhere between 3 and 5 years old was walking in front of his parents crying so hard. They had to walk through our group that was standing outside our door to get down the hall to his new room that he was checking into. His mom and dad were walking behind carrying his bags looking equally as sad, though trying not to show it. I cried for him. I cried knowing that this little guy is going to have to endure more sickness and pain just so that he can get healthy. I cried for him knowing that checking in meant the loss of his freedom, it meant fear, it meant anxiety, it means being away from home and it meant cancer. As this little guy was coming down the hall and through our group, everyone there knew him. Every Single practitioner that was there knew him. They all tried giving him high fives and gave him words of encouragement. I don't think he heard any of it.

I saw that sadness, that fear, that anxiety in Bryanna. I saw it in her every single day. I heard it in the words she shared with me at night when no one was in the room - in the few moments that she had to herself.  Cancer takes people to a very dark place - it can easily suck the light out of a person's soul. Surprisingly, Bryanna didn't let it - I don't know if it was because we tried to be up beat and encouraging, maybe it was because she was never alone. But whatever the reason, she fought her hardest and she gave it her all. Yes, she no longer named any of her stuffed animals once admitted - This is a monumental change for her as she named every little spec of a friend that she had up until this point. Yes, she stopped writing in her journal and stopped writing poems. But she still painted. She still painted hearts and animals. She still found a way through all the pain and suffering, all the fear and anxiety to find love of which she showed in her art work.

We found a poem after she passed away, on her bed and under her stuffed animals. We don't know how it got there because she would have wrote it before she was admitted to Childrens hospital. But this poem talked about a soul looking down on her and how scary yet beautiful it was. She ended it by saying good by world, good by soul. Bryanna was not a depressed child but she was sick for months before being diagnosed. She knew she was sick and I knew she was sick. I just didn't know how sick - no matter how many doctor appointments we went to, leukemia never presented. It always bothered me and I'm sure our doctors, who were and still are ever so gracious and inviting to us to bring any of our kids in for assessment anytime. Our team, both before she was admitted to Childrens, at Holy Cross and at our Pediatrician's office all did everything they could for her. We will always wonder if it had been detected sooner would she still be alive - but we never doubt any of her doctors. They did every test possible up front but the leukemia outsmarted everyone - it hid until the very last minute.

But beyond medicine, I believe that her poem told us everything we now know - Bryanna knew her time was coming. Bryanna told me as such during many of those nights at the hospital. She knew she was going to die. It breaks my heart that she felt that way before though.

It would be so easy to stuff all of Bryanna's stuff into my walk in closet and lock the door. But we found that doesn't work - it doesn't make it easier on anyone.  Bryanna would have hated that. So, the other day we went through the majority of Bryanna's items from the hospital. We got pink bins to store them in. Pink - that was her color. This weekend we rearranged Bryanna and Evey's room to make it Evey's room. Evey thought for sure that she would feel so much better and not miss Bryanna that way. We knew that it would be just as hard because now there is an emptiness of a bed gone. Evey decided that she wanted to keep Bryanna's bed as hers so we are likely going to donate Evey's bed to a family that needs a nice bed. We changed the entire look of the room to hopefully take some of the void away. We put a reading nook where Bryanna's bed was. We kept her light and bed stand as part of the reading nook so they can feel a part of her while Evey and Liam snuggle their bean bag chairs and read or chat.  It is an adorable room. It is a room with such a void that no matter how many times we rearrange it, it doesn't feel right. Evey was excited to sleep in her room last night. She came into our bed in the middle of the night scared that she was by herself. She started in her room tonight and before she even fell asleep came into my bed. We struggle to find the balance of moving on and trying to fill the void. I feel like Bryanna is right here with me sometimes and other times emptiness.
I don't know how we are going to get through this. Counseling and love are great - but they only do so much. Trying to explain to the kids what "she is in our hearts" means when that is not physically possible (my kids...especially Evey is very literal) and reminding them that she is our guardian angel in heaven, but having to explain the physical location of heaven not being on earth and yet not in space - how does something like this happen? How did we become a cancer family and then one day we are just a family...broken and trying to pick up the pieces?

As hard as it is to go through the McDonalds drive through and see the donation box for the Ronald McDonald house - they were a god send for us. They gave us hugs and snacks and coffee..washer and dryer at no cost...goodies for Bryanna and a safe space for her to draw on a chalk board (even though they had to rearrange the room so her wheelchair could fit in..) and a reprieve. They never thought twice. They just were there for us. Thanks to the donations...they were there for us and many other families.  As much as it makes me want to scream and cry when they ask me if I want to by a key tag at Wendy's for donation to St. Judes, St. Judes was instrumental in assisting in getting Bryanna on the most appropriate protocol for treatment...only after they gave a final diagnosis of ETP-ALL. St. Judes, largely thanks to the donations from all the generous people one way or another, identified this mutated gene that causes ETP-ALL and is one of the few places continuing research to save the lives of other kids who are diagnosed with ETP-ALL.  I have only read one story of a little guy surviving this deadly disease - but he did. So, as much as I want to scream and cry and hate all the commercials - they are saving kids lives. They did everything they could to save Bryanna's Life. For that, I am eternally grateful. They certainly don't show the ugly, but perhaps that is how they get so much support - they show what we the people want to see - they show hope.

I support hope - I support love - I support strength - I support every single person trying to battle the hardest battle of their lives, be it as a patient or as a caregiver by their child's side. I stand with you and I stand by you. I understand. I offer no judgment, just an endless supply of hugs, love and understanding.

When you think that you just can't walk anymore, remember that you got this.

Sometimes it seems like the world spins so fast and we get lost inside. It seems like as life moves on each and every day, that those who are dealing with something so huge, so significant that they are trying to claw their way out of the center of that world and take a big breath of fresh air, just see the world spinning and can't move with it. That is not us. That cannot be us. It would be so very easy for us to get lost in the center of the world as it spins on it's axis while life moves on. It would be so very easy to get lost in our sea of sheets and comfy blankets and not get up when we realize that we did lose that hour of sleep thanks to day light savings. It would be so very easy to keep everything that was Bryanna's in the exact same place and walk by it as if she would be coming home later in the day to pick it up or move it, to snuggle it or talk about it. It would be so easy to forget how devasting the her struggle was, how devastating Evey and Liam's struggle was and is and how devastating that struggle still remains. It would be so easy to keep buying her favorite cheese, or to make her favorite dishes that no one else liked. It would be so easy, yet it's not.  The world keeps turning and we continue to press forward - we continue to try to remember Bryanna, talk about Bryanna and love Bryanna but we can't close the curtains and live in darkness. We can't continue to buy the foods that only she would like. We can't walk by a toy that may have fallen while the kids played and leave it as is, we can't ignore the fact that she is no longer coming home, that she will never, ever sleep in her bed again. That she will no longer be on the couch, snuggling her animal blanket and puppy and basking in the glory of no school on a snow day.  But we do have to keep reminding the kids that it's okay to not be okay in that moment that we once again realize how empty the table feels and how empty her bedroom feels. We have to keep reminding the kids and reminding ourselves to look up at the sky and know that Bryanna's star will always be there. That it is okay to go to the cemetery when they want to see and talk to Bryanna's puppy angel. It is all okay.
Today was a great day here at home. It was the first snow day of the year, which meant movies and popcorn, inventions, makeshift parks that we all played in (Evey created obstacles to go through out of boxes), some homework and lots of snuggles. But with all those snuggles and all the fun things that we did today, we would stop and reflect on how much Bryanna would have laughed at this or looked at that, how we miss her at the table or hearing how excited she was for the snow. It's in those moments that we are having fun, or that we are having a good day that we miss Bryanna. It is in those moments that we have to brace ourselves for that impact that this is reality. It is in the moments that Evey or Liam will remind us that we are not whole because we are missing a vital part of our family. It is in those moments that we have to remind ourselves to breathe.

As we move forward with life after Cancer, after ETP-ALL and chemo, endless medications, pain and suffering, we have to make sense of what happened as much as we can. Evey struggles with where Bryanna is now. Not whether she is in heaven or where her spirit is - but where exactly is her body. Liam struggles with kids nearby playing as if they died or playing as if they are hurt or sick - he will tell them "I have a sister. Her name is Bryanna. She died".  How do you get kids through something so heartbreaking. In their mind, there is an order to death. An order by age and it makes sense. Kids should never die before their parents. Kids should never suffer to any degree and especially not to the degree of what ETP-ALL, what cancer - did to Bryanna.

In recent days, I have heard about advanced treatment and new treatment for various types of cancers including leukemia - yet I have not heard any news about ETP-ALL. I can't help but wonder if this new AML treatment could have given Bryanna a chance of achieving remission. Yet, I have not heard any mention of this difficult and almost incurable type of cancer. It is as if it doesn't exist. They say that only 4 percent of funds go to research for childhood cancer. If that is true - why is that? Aren't kids our future? Shouldn't kids, the most vulnerable and the most delicate need us - the adults and professionals, the scientist and the most educated minds - to have the funds to find treatment, to find a way...to find a cure? Don't we owe it to these kids that are fighting the hardest battle of their lives - the vast majority not even old enough to have tested the boundaries of good and bad in life, not even old enough to question fairy tales yet old enough to believe in fairy bubbles for protection, to believe in the tooth fairy, to believe in santa clause and to believe in hope? Shouldn't we be able to fund hope? If 96% of all donations go to adult cancers, can't we rethink how research is conducted?  Don't get me wrong - without these researchers and doctors - there would be far more deaths to report. There would be significantly more moms and dads saying what we say...Another Day. We Got Through Another Day. But there has to be more that we can do - the doctors and researchers are working so very hard to save lives - we have to help them get the resources they need to save these lives - to save lives like Bryanna.

Early T-Cell Precursor Acute Lymphoblastic Leukemia - Discovered by St. Judes Children's Research Hospital. Research continues through St. Judes and Washington University's Pediatric Cancer Genome Project.  Survival Rate is one of the lowest at 30% for pediatric cancer. Research and Medical Journal articles are so limited that Bryanna is now likely a patient that contributes to saving the lives of other kids.  I pray that the day comes soon where ETP-ALL can be cured - not for 30 percent of patients,but for all of the patients. I hope that Evey and Liam do not fall into the statistics of which state that 1 in every 500 siblings will get leukemia. Bryanna sure defied all statistical odds (and not in her favor). Let's hope our family can now beat the odds.  I hope for our family that we can not only continue to get through another day and remind ourselves that tomorrow is indeed a new day but also get stronger with each small step, with each reminder, with each breath.

~When you think that you just can't walk anymore, remember that you got this. You got here and you can get over there. You are strong, beautiful and will get through this. Today is another day but tomorrow is a new day.  Remember that even when you don't believe it...you got this. We will be here right by your side and on the days that you can't get up by yourself, we will help you get up. On the days that you don't think you can do this anymore, we will make sure you can do this. You will never be alone. You got this. ~
 - That is what I said to Bryanna over and over during treatment. I hope it gave her some courage when she needed it the most.

Tomorrow is a new day.
                             
             

The power to love: The Strength to See The Power of Love

The power to love: The Strength to See The Power of Love: Having the strength to love is such a powerful thought. Growing up, I always thought about how my life would turn out - I thought for sure ...

The Strength to See The Power of Love

Having the strength to love is such a powerful thought. Growing up, I always thought about how my life would turn out - I thought for sure that I would find the perfect man, fall in love, have the perfect group of kids, work, live and love. What I didn't know is that my life would not take that beautifully carved out path that I though it would. But that's not to say that my path hasn't been full of love. 
I grew up in Japan - a beautifully gracious and amazing country. I am lucky enough to call two countries my home. After graduating high school, I embarked on the longest adventure that I had ever had - I moved to the US to attend college...it was much like boarding school as my family was still in Japan. So, I went to college, I worked through college, graduated and then shortly thereafter, I met my husband and I fell in love. I fell head over heals in love. Soon after we were both excited to be blessed with the fact that we were going to have a beautiful baby girl. We named her Bryanna. We feel in love with this little girl before she was more than the size of a pea. She was perfect. She was everything I had ever hoped for in a baby - when she was no longer in me. I was never a beautiful, glowing pregnant mommy to be, with any of my kids. But, once she was born, I feel in love with her all over again. Bryanna made me mommy. Bryanna made Mike daddy. She made us better people and the world, a better place. Bryanna confirmed everything I thought I would love about being a mom - it was amazing, it was beautiful and it was everything I always wanted. It was also dirty, exhausting and isolating. Any new mom would tell you that there are the many days that you miss just dropping everything and meeting up with a friend to have dinner at the drop of a dime...feeling totally refreshed and energized, clean and well, just human. But, I would never ever give up any of the late nights with fevers and throw up, potty training, never ending (and impossible to keep up with) laundry, skinned knees requiring the most tender kisses better, hugs, squeals of pure delight when seeing me after work - the first question is do you have a treat for me....the extra treat that I would pack in my lunch knowing and expecting that sweet little question from Bryanna. Bryanna laid the path for Evey and Liam. Each one of our kids has grown into their own personality with their own uniqueness that makes them so very special. Each one being just as uniquely special as the other. 
I was once asked how I split my love among three kids. She wanted to know how it was possible to love each kid just as much as the other when we as the parent only have one heart and only so much energy to give. I thought about that long and hard. We don't (at least I don't) split my love but rather I love each one of them for each of their own unique personalities so much. Never one more than the other because I believe that as our family grows, so too does our hearts.  As a person, I believe that our hearts our so strong and so powerful that we can love more than we realize, more than we think we can. We just have to have the strength to understand that. We have to have the strength to continue to love even when we lose a part of that heart that continued to grow with each special person in our family. 

Bryanna at the age of 9, only 3 weeks after her 9th birthday, only 2 weeks after her last adventure packed trip to Myrtle beach, only 2 days after her first overnight stay at her favorite camp (Camp Sonshine), was admitted to the hospital critically ill. What we thought was Menengitis turned out to be one of the most rare forms of childhood leukemia - ETP-ALL. That moment when the doctor took my hand and told me that she had leukemia, the moment that her oncologist sat down with us and told us to call the Make a Wish foundation, the moment when she was first intubated due to compensated septic shock, the moment when she smiled because I made her fly by sitting hard on her bed...the same bed that she could no longer freely get out of due to her loss of mobility, the moment I saw her heart stop and the doctors revive her, the moment she squeezed my hand, the moment she looked in my eyes, the moment that I know that this was the day that would be her last, the moment I laid next to her with Mike on her other side and we let her fall asleep and be at peace...the moment that we learned how much love was still in our heart even though there is now a gaping hole where she should still be....these and many many more are the moments that I will never forget. The moments that we all try to get through on a daily basis. 

Like Mike and I, Evey and Liam are trying to work through their moments, their whys, their hows and their what do I do nows. Every day is hard, some are harder. Every moment is trying, some are better. Some days we can't breath and other days we just tell ourselves to put one foot in front of the other so that you can get the job done. But at the end of the day - we try to see the beautiful sun in the sky, the wind rustling the trees back and forth, the deer that come up the hill behind our house, the bright start in the sky every night - Bryanna's star. We try to see the beautiful part of life that we know Bryanna would have loved. We try to have the strength to continue to love each one of these things and more. The one thing that we have no difficulty is finding the strength to show Evey and Liam how we continue to love them. Their lives are just as important. They matter just as much. They fill my heart in just the same way that Bryanna did, yet in their own uniquely beautiful way. Regardless of what happens in life - we are a family of five. We are family. We are love. We are strength. We are brave. We will get through this. 

When you lose someone so close and so young, you are showered with love and support from everyone you know and don't know. You are put into this bubble that seems to continue to grow - much like your heart. But then as time passes, life continues to move on, the world keeps spinning, we find that that bubble starts to shrink and then somehow, perhaps by our own doing, that bubble becomes really small with close friends and family. That bubble starts to become isolating and lonely. It doesn't matter how much love is extended to us - we have this gaping hole where Bryanna should be. We have this empty chair - this empty bed, this empty laundry basket, empty spot where her backpack should be hanging, we have an empty place where her tooth brush should be, and empty spot in the refrigerator where her favorite food would have been. We have an emptiness in our heart that no matter how big or small our bubble is, no matter how much love there is, we can't fill. 

But we have to remember that we have to have the strength to love. We have to continue to have faith that we will get through this storm - we will get through the shock of cancer and the pain it has caused. We will make sure that Evey and Liam know that they are loved, that they matter and that they belong - they always have and they always will. They are our heart, they are what makes the world spin. 

As I figure out my way on this blog, I am going to try to bring awareness to ETP-ALL. I will someday write in more detail and in a different platform (perhaps a book), but for now, as we get through these early days of missing Bryanna, of figuring out how to take that next step forward, I will post here. As hard as it is, I will close the chapter of CaringBridge and will continue my journey of life, healing and love through my new blog. I'm hoping you will continue to walk that path with me, continue to read my entries and continue to look for Bryanna's star.  Hopefully this will help a little in my healing process - and maybe...just maybe my blogs will help someone going through a tough time, somewhere out there.  Cancer does not discriminate and cancer is scary and messy and painful. Parenting is dirty, exhausting, scary, amazing and beautiful all at the same time. Maybe, just maybe I can find a way to bring the two together and help support what we call the cancer family - but even if you have not been affected by cancer, maybe there is something else in life that has touched you or affected you so deeply that you too are trying to find your way. Maybe you lost a child or loved one as well - I can't take your pain away. I won't even try as I know that nothing but time will ease my pain of losing my beautiful girl who had the most brightest smile (though hugs do seem help). I know that the day will come where this pain is manageable - that it will be okay to breath knowing that I won't feel the stabbing pain of loss with every breath. That day will come. In the mean time, I am going to continue to look at the sun and continue to have the strength to love. I hope you too can find the strength to see the power of love.