When we are kids, we wonder how time seems to pass so slowly. We ask our parents why can't we do that one special thing sooner. We ask them how much longer until our birthday. We tick down the hours with such diligence as we play with our friends with the hopes that by doing so it would go by quicker. Without fail, our parents would say, "don't wish your time away - when you get older, your time will seem to go by way faster". That concept never made sense to me as kid. Yet, I say the same thing to my kids. I said the same thing to my kids. I say the same thing to my kid. Read that again. The grammar is correct. You read that right.
Everyday that we wake up, we are on borrowed time. We borrow the special time with our children, with our significant other, with our beloved pets. We borrow our time with work, with financial stability and with our health. It is never our time. It is borrowed. Some say it is God giving us this time to cherish. If that's the case, then I have some serious questions.
I can't remember what I had for breakfast, or even if I had breakfast, lunch or dinner in any given day. But I sure can remember every moment leading up to Bryanna's final breaths as I laid in her hospital bed and they looped Katy Perry's Fireworks and took her off Echmo. I remember picking of Evey and Liam. I remember what each kiddo said to me and Mike when we told them that their 9 year old sister, their best friend died that day - October 24th, 2016.
I remember every painful second of December 15th as well. It was only ten days until Christmas morning - Evey's favorite holiday. My borrowed time was taken back. It was cut short. I remember every single minute of that day. I remember panicking because I couldn't see her rescue medication in my hand. I remember holding Evey's nose, putting my mouth over hers and breathing for her. I tried to breathe life back into my girl. I remember my best friend doing chest compressions while talking to 911. I remember Liam running to his room in the loft and calling 911 on his alexa device. I remember Socks trying to get to Evey but so scared. I remember every painstaking second of that day.
I remember the exact moment that both Jenn and I knew we lost her. The moment that the light went out of her eyes. With Bryanna, she simply was. It was peaceful. She was given a significant amount of medication to mitigate any pain she would feel caused by her cancer, her failing liver, her failing kidneys, her failed lungs and her failed heart. She just simply slipped away to her Cotton Candy Clouds while listening to her favorite song. In my arms. I held her. I held her and hugged her and loved her until I panicked. She was no longer warm. It happened too fast - her doctors assured me it was normal. No, it absolutely was not normal. Holding your 9 year old girl who is dying from cancer was indeed, not normal.
But it was different with Evey. I knew the exact moment her soul left her body. I felt it in my soul. I didn't want to believe it. I kept breathing life into her lungs as long as I could while we continued chest compressions until EMS arrived. I remember the moment I sat on the back of my couch with the officer who had responded to one of the early days of her elopment. She found a box turtle that day. She had to save it, got turned around and ended up 2 miles from home. Now, we were sitting on the back of my couch watching the lucas machine pumping blood through Evey's body, EMS pumping meds, fluids multiple lines and calmly talking it through as they tried to get her back. I watched the officers on my stairs. I watched them take her out my sliding glass door on a stretch and into the ambulance. Still not giving up. I remember the moment that I asked the ambulance driver why we weren't meeting a medivac chopper and she said "Because there is no heartbeat". I remember seeing Liam outside with his village. I remember the entire ER staff looking at me when we came in because they knew. They were waiting. The patient advocate was waiting. I remember having to give her a final hug. I remember my friends gathered outside her hospital room door, watching with so much love in their eyes. I remember all of that. I remember every painstaking detail.
Borrowed time is a cruel concept. Why do some people get a longer life with their family? How do some families get to see their kids off to college, get married and have kids? What have I done in my life to get so little borrowed time?
I remember the exact moment in court when Mike, their dad and my ex-husband of 10 years blamed me for both Bryanna and Evey's death. I remember the exact moment that he also said that Liam would end up the same because of me. He took precious time away from my kids to blame me for something that was not my fault. He took time I had with the kids away to hurt me more. Intentionally. During my borrowed time.
All I ever wanted to be is a mom. I'm not perfect but I think that I do a pretty good job. My kids, each and every one of them and I have all been very close. Life seems cruel, and painfully unfair at times. But that borrowed time brought me the most profound love, compassion and three beautiful souls that called and still call me mom. I am so very grateful for each and every second of my time with my kids. I only wish I had more time with my girls.
Liam and I are navigating this painfully slow road of finding our new normal. We have to figure out how to make more noise in a house that is now oddly quite. I have to find a way to eat because Evey was my foodie, liam perfers his safe foods. I have to find a way to no longer have my girl talking to me and telling me something super amazing while I cook dinner. I have to find away to not desperately want the insanely strong hip bumps from my girl who definately was taller than me. I have to find away to wear my shirts that Evey used to borrow. I have to find away to deal with the fact that I have nothing that smells like my girl anymore. Her shoes still remain where she put them in the shoes cabinet. Her room is lovingly now taken over by Liam and his pets...intentionally. Instead of having my two girls talking about dances, boys, best friends and the animals they love, I have pictures. I only have memories now.
My borrowed time hurts. But I am so thankful for that time. I desperately beg all the gods to please give me more borrowed time with Liam. I need him to grow up and have more than this. I need him to become an adult - to tell me about his jobs, girlfriends, pets - maybe even his own home one day.
I know we are on borrowed time. I hope for your sake you get all that time you want and need with the people that you love. I hope that you get more than me. Because faking being okay every day is exhuasting. Not being okay everyday is exhuasting. Having only memories of our borrowed time is...
I said I love you to all my kids all the time. Last night Liam said, 'you say it a lot' to which I replied, 'isn't it better to know how loved you are than to not know at all?'. He quitely processed that. A few minutes later he said "Mom, I love you".
Hug your kids. Tell them you love them. You can't control the time that you borrow - but you can control the quality of that time. Use your borrowed time wisely. When it's gone, there is no getting it back.
Do you ever wonder what happens when a child finds the one thing that they love more than anything? They use it again, and again and again. When Evey was 14, I found the cutest bike on Amazon marketplace for Evey. It was 25.00. We all got packed into my car, went to the ATM and carefully navigated the driveway to this unknown person's house. If you know me, you know that the safety of my kids puts me in a position to never go to people's house that I don't know. In this day and age, it seems like the smart thing to do. Then again, with online market places and unbeatable deals through social media, it's also a bit behind the times. I told the kids to stay close and not explore without me there. We got out of the car and walked to the side of the house that the could-be-serial-killer told us to go to. A lady was just leaving seemingly in good spirits from that same side. It seemed safe...ish. As we approach the side of the house, we see a sprawling backyard with so many items saved from likely the dump. Liam was apprehensive but Evey's eyes lit up. This was her paradise. This, my friends, was where she was meant to be in that moment. If you knew Evey, you would know that she LOVED to find previously loved items and gift them to someone else - not just anyone, but someone who she knew would absolutetly love that particular item. I reigned her in so we could focus on this bike. It was a shiney purple bike with a wide seat. Something you would see in a movie with the character peddaling around ocean streets with a whimsical straw hat on and flowers and french bread in her basket. It was perfect. This purple bike was meant to be Evey's bike. While I paid for it, Liam lucked out and got to pick out some treasure for himself - "on the house" said the limping old man whose entire life was clearly in this backyard with the mission to repurpose each loved item. After a few minutes, Liam emerged with a very dusty toy car that he found on some shelf in one of the many open sheds filled to the rim with loved and cherished items. He had stars in his eyes that day. Evey was estatic - it was the first bike that she got to pick out. It had the perfect spot for a basket on the back of the bike, which she promptly hooked up with bungie ropes.
This purple bicycle gave her the confidence to ride a bike without three wheels. The bigger seat made her feel secure so she no longer felt that she needed a seat back. We equipped it with the best wicker basket we had at the time. You may be wondering what did she put in it. Well, no, she did not put bread or flowers. She put two things. Her ever growing collection of squishies and Snow, her grey hen, that loved doing everything with her. Whether Snow liked it or not, Evey was going to get her used to her bike so that they could enjoy the neighborhood together. Snow quickly adapted and got comfy inside this basket as Evey rode her purple bike.
Skipping ahead to 6 months later, I had to make the hard decision to uproot my kids and leave our home that we tried to share with my husband who we had only wed a year ago. The abuse was escalating, the drawings depicting her sadness increasing, and the trauma from the marriage had taken it's toll on us. With the help of my close friend, we left while he was out of town (a story for another time), and I made sure to not just pack what would fit in my car, but Snow and her purple bicycle.
Fast forward a few months as we settled into our new neighborhood - Evey became known as the girl with the purple bicycle. The girl with the purple bicycle walking her dog. The girl with the purple bicycle with her bearded dragon hitching a ride in her purse. This purple bicycle became her source of strength. She "walked" her 100 lb English Creme Golden Retriever Socks while she rode her bike. Socks was so intune to her that he never strayed far from her side. Neighbors knew Evey from that purple bicycle. The purple bicycle that was so loved and used that one day Evey came home crying because as she was riding it, the front wheel decided to come off. Just rolled right off. If she wasn't so upsest, it would have been really funny. She wasn't upset that she crashed because her tire literally came off, but rather because she was afraid that her purple bicycle would have to be retired. Thanks to some neighbors who were handy with bikes, we got that tire and bumper back on and her routine of riding her bike every day resumed. I made sure she had a nice basket on the front, a light on the front and reflector and light on the back. She was ready to rock it on the dark evenings on the way home from the park, or walking Socks.
The purple bicycle became a source of stress relief for her. When Evey was feeling stressed, angy (or mad as she called it), upset or confused, she would ask to ride her bike. Riding her bike gave her an opportunity to think. Thinking was not easy for Evey. Thinking and processing the world took a lot of work for my girl. But not when she was on her purple bicycle. The world made sense on the purple bicycle. When life would feel to overwhelming, she would ask to go for a bike ride. She would do two loops around the neighborhood and then come back feeling calm.
Evey didn't like walking because she had really severe pots. Her heart rate would soar just walking a little bit, but it was much easier when she was on her bike. That purple bike went to the park, to the neighbor's house, to the dog park, to the laundry mat, to the pool. It went wherever Evey's heart took her. That purple bicycle saw more dips and grooves of our roads than most feet do. Evey knew every turn, every rocky part of the road, every dip and was able to skillfully navigate without falling, even though she had poor balance. The pride she had in herself when she was on that purple bicycle was so significant that words couldn't possibly do it justice. This from a girl who never thought she would ride a bike.
The joy that the purple bicycle brought one young girl extends beyond one heart and into the heart of the entire neighborhood.
Now the purple bicycle sits. It has not been moved since the last time that Evey asked to go for a bike ride. The day before she died. The day before the worst day of my life happened for a second time. The purple bicycle was a symbol of strength, perseverance and courage for an amazing young teenager. A teenager that struggled with anxiety, depression, ARFID, Epilepsy, Autism, Sensory Processing Disorder and Pots. It was a symbol of community as neighbors dropped off tokens of their love for my girl and her purple bicycle the day she died.
Now, the purple bicycle sits. It is stuck in a loop of love and hope, dust and perserverance. It sits there with the reminder of the memories made. The memories that only Evey could make as she brought this once used but now treasured rolling machine of courage come to life. I don't know what will happen to her purple bicycle - but I do know that for now it sits where she put it. Evey made sure that it was in a specific spot in front of our home standing upright so that it was well loved and well taken care of.
The purple bicycle - filled with love, hope, perserverance and bravery collects raindrops, pollen and the occasional bug. It is a reminder that even the hardest things can be done and can bring smiles to more than one strong, brave young teenager. The purple bicycle brought a community together - a community that rallied around one girl and her favorite purple bicycle.
It's been a while since I have blogged here. It's been a while because my heart has been trying to heal. But at the end of the day I have realized that writing is what helps me heal. It helps the broken not feel so shattered.
Tonight I had this intense need to read the eulogy that I wrote for Bryanna. Sure, that sounds morbid, and sure it's not the most uplifting way to start tonight off, but hang with me for a minute.
After I put Evey and Liam to bed and as I was coming down our stairs I wondered how life could be so cruel that I had to be in the position to write a eulogy for my daughter a short time ago. So I read it.
I'll spare you the entire eulogy but here are some points that really made my breath catch.
"July 9, 2007. That is the day that a beautiful, sweet
little girl was born. She came early – on her own terms with her own rules. For
as long as I can remember – even back when I was a kid – I always wanted to be
a mom. But I never truly understood the magnitude of what being a mom would be
like. She made me understand the power of a parent’s love. A love that is
unbreakable, unrelenting and so powerful that a single hug is never enough..." "I have never met a more strong, brave and
courageous person in my entire life. Bryanna fought this battle with such grace
and more courage than I know I could. No parent should ever have to tell their
child that they have cancer. Her response when I told her was “that’s the one that
means death”.Yet she fought hard. She
struggled getting through every single procedure even though she hated being
touched. She no longer was doing anything on her terms. But she fought hard.
She looked forward to getting special treats and various events such as
designing her own jewelry. I think that’s what got her through..." "The day her heart stopped the first time was one of
the most scary moments of my life. But she fought though that. She proved every
doctor and nurse that were working so hard wrong. She kept fighting each and
every hour for days and she told us she was there..."
"...Cancer is a darkness that sucks the light out of a
person’s soul. But Bryanna never let her light go. Through the darkness, she
let her light shine. She shines bright even on the darkest days. I don’t think
she knew how to do it any other way. "
Funny, as I write this, a beautiful song called "I just called to say I love you" started playing. Isn't it spectacular how we see the love and the signs that our love is being received and their love is being given, if we let it?
Is my heart any less broken these days, you may wonder? No. Am I functioning better than I was last year...some days sure. Other days no. See, grief doesn't just stop because a new year is born
or a new day starts. Grief comes and goes each day just like it did the day before. You don't ever get over the loss of a child...but you do get better at hiding the hurt behind that loss.
That being said, I find love and joy in those little moments that would be so easy to take for granted. I found so much love in the kids today as we sat at a table so low to the ground with dinasours etched in the back, near the lava seat at the local library. A place so simple, yet the kids find the freedom to choose the book that speaks to them. Then we all read it together. I saw the love today in the excitement they got when they asked if they could get two books instead of one. I saw the love today in Evey who contained her frustration after stepping on one of Liam's toys and asked him to please pick it up after he was done using the bathroom. I heard the love today when Liam said "I'm sorry Evey". I saw the love when I looked in the sky and saw the stars smiling down on me.
Does it make it easy? No. Does it make me feel less isolated in this world of loss? Of course not. Does it make me miss my baby any less? Definately not. But it could be worse. I could feel nothing. My life could be completely void of love. Love, as defined so beautifully by Bryanna, Evey and Liam just by being them.
Don't forget to Love today. It's so important for tomorrow.
Today, August 3rd has so many memories as posted on Facebook.
August 3, 2012 -
Today is the first day of my second trimester ~yea~- This morning Bryanna gently placed her hand on my belly and said: "Mommy, your belly is getting soo big". ;)
Bryanna was 6 years old, Evey would have been 4 and Liam was in my belly.
August 3, 2014-
"Spending a day at the zoo with my favorite peeps was the perfect pick me up."
August 3, 2016 -
What I thought was the worst day of my life...
A post from my sister:
"My sister asked me to post and request a prayer warrior group. Her oldest daughter was diagnosed with acute leukemia today and they are wanting all the prayers possible. They are gonna be staying at Childrens National Hospital for several weeks as she begins her treatment tomorrow. This is gonna be a long road for Bryanna and Kristena but we got your back... and the prognosis is high for peds leukemia..."
~3 weeks after Bryanna's 9th birtday - Evey was going into first grade...Liam was only 3.
Statistics say that the prognosis for Pediatric Cancer is high - Each year, more research is conducted, more clinical trials are created, more children are being cured. And yet, more children still are diagnosed with cancer. More children are still dying.
August 3, 2016 - After a very long day, Bryanna's IV was hurting her hand. I asked someone if they could help her with that - it turned out to be a doctor who was happy to do it himself. I never left Bryanna alone. Ever. At that exact moment, Bryanna's lead doctor asked me to go with them to a conference room. I asked them if we could wait until after they fixed her IV. They asked me if we could go then. Until this time, I had never left Bryanna. Yet, I left her side because I knew this was bad. We walked into the room - the doctor shut the door. Two doctors sat across from me, the other doctor sat next to me. She took my hand and she said "Bryanna has Leukemia". I felt every feeling in that moment - I was suddenly unable to breathe, I felt like my heart could stop any moment and I felt like I could see all of this from above - I did everything to not pass out. I cried, I shook, I tried not to throw up. The doctors realized at this point that I had not eaten that day and it was already after 5pm. One of them ran and got me food, though I didn't eat it. Then, I dusted myself off and I asked tough questions. What we knew was that Leukemia was very serious but prognosis has improved drastically for patients like Bryanna. Yet it didn't.
After I could breathe, we called Mike together because he had just left to let his dogs out. He learned about her diagnosis over the phone while driving. There is no good time to learn about Cancer. That night, I called my family, and Mike called his. We didn't know what the next day, hour or minute held but we knew we had to fight. We have to fight until every single cancer cell was out of our baby. Until we couldn't. Less than three months later, she died. Statistics didn't matter to us, because every news we got was worse than the one before. We went from 80% survival rate, to 70% survival and then with the final diagnosis of ETP-ALL we were told she had a 30% survival rate. Damn the statistics - my baby was not a statistic. These children are not statistics.
Science may say that Bryanna is a statistic. Society may say she was a statistic. But we know that Bryanna was a beautiful little girl that LOVED to sing. She loved making videos with my phone without me knowing. She loved Katy Perry and Taylor Swift. Her favorite song in the entire world was Fireworks. She loved to sing and she let the world know that! She loved glitter...Oh she loved glitter. She loved gold, silver, pink, blue, purple and every other color in the rainbow. Elsa was her character of choice and she made Evey and Liam dress up as Anna and Olaf and created "live shows" for me to watch. Bryanna loved stuffed animals and real animals - and I mean REALLY LOVED ANIMALS. She connected with them. With horses, cats, birds, dogs...she had a special connection with any animal she came in contact with. Bryanna cried with me when the shelter dog commercials came on. She had compassion and empathy. She didn't really like popcorn much but she certainly loved sour patch kids. She loved to tease me and say they were sweet and laugh when I was "suprised" that they were sour. Bryanna loved to go to bed with Evey and Liam, have our story time and then come out and have an ice cream date with me after they went to sleep. During that time, Bryanna would tell me whatever was on her mind while we shared a tiny container of icecream. Two spoons, 1 container and lots of love. 10 minutes. That's all it took - 10 minutes of pure joy and love and ice cream. Bryanna was a damn good fighter. Bryanna knew she was dying yet she took it all on with grace. With all the extrodinary pain that she endured every single second of the day, despite all the meds to mitigate it, and despite the fear when the lights went off - she dealt with it all better than I could have ever have. Bryanna is my hero - she is someone that I admire, respect, love and look up to. She is someone that is the role model that I had hoped to be to her. She saw the good in the bad, and the beauty in the ugly. If folks would see the world like she did, it would be a much better place.
Tell me, does that sound like a statistic to you? When parents are sat down and they are told the survival rate - those kids that are grouped into the fatal group and the survivor group become a statistc. Sure - that's necessary for gauging the progress and scientific advances. But in all those advances, society forgets what these statistics mean -
They mean Bryanna who was diagnosed 3 weeks after her 9th birthday and died on October 24, 2016 and who would have been 12 as of last month. They mean Micky who died only 2 short weeks after his 12th birtday on April 13, 2019. They mean Siona who was diagnosed at 4 years old and passed away in 2011. These kids had ETP-ALL. These kids make up the 30%...that 30% that we were told would never be our kid.
Today, 3 years ago was the day that we were told that Bryanna had Leukemia. It was the worst day of my life - or so I thought.
Today as I was driving, a car pulled in front of me with the license plate that said "BR3TH3" with a butterfly next to it. Today, Bryanna has shown herself to me in so many ways...to my family. To my friends.
Three years ago today I held my baby as she slept knowing that we had to get through this, we would get through this and we would have hope.
Today, three years later - I ache to hold my baby, I ache to hear her voice, to feel her touch, to smell her. But I still have hope. Today - three years from now - I will still have that ache, but I hope that her love will still be as strong in my heart as it was then.
Three years ago today, my world was forever changed.
Three years ago today my heart shattered - but my love stayed strong.
I miss you so much Bryanna. Forever and Always baby girl. Forever and Always.
October 24, 2016, we woke up to knowing that this would be the last day that Bryanna would live on this earth. I knew in my heart before the painful meetings with the team, before the decisions were made, that we only had a few precious hours with our little girl. I knew in my heart that she was dying way before this and I knew on this morning...actually from the night before that there was no chance of saving her life. I knew that I was having to say goodbye.
Bryanna was only diagnosed with ETP-ALL less than three months prior to this day. One day within a month or so of her diagnosis, I decided to bring my digital camera into the hospital and started taking pictures. I told myself and others that this was to document her progress so that she can look back at how far she had come. I said to myself that she would one day get to a place where she could see how beautiful she was and how hard she had worked. I told myself that we would be looking at these pictures someday after she was in remission and give her a big hug and say how proud I was of her getting through the toughest battle of her life. That's what I told myself. But honestly, that's not why I did it. I was telling my mom one day what I had told myself and she saw right through me...as she always does. The truth was, I knew that I was documenting the last days of her life. I knew that she was dying and I knew that I needed to have pictures of her battle, of my little girl fighting so bravely, some times when the meds were kicking in, with a smile. My girl was dying. My baby girl who had only turned 9 three weeks before her diagnosis and 3 months before that faithful day where I knew I was going to have to say goodbye. My baby girl was dying.
October 24, 2016 at 2:14 pm, as I laid next to Bryanna in her bed in the CICU with her in my arms and as her daddy held her hand. On 2:14 pm as the monitors were silenced so we would not hear the screaming alarm of no heart beat, as I once again for the second time watched as her heart rate dropped to 0 and a flat line kept moving across the screen... On 2:14 when her favorite song Fireworks from Katy Perry was looped again for the umpteenth time by her oncology fellow...at 2:14 when I panicked as I saw the color drain out of her body and her body go cold. As I looked up at her oncologist panicking and was reassured that this is part of the process ---on 2:14 when my baby, with a look of peace for the first time since before her battle in the hospital started, became an angel in my arms...on 2:14 when I cried and apologized for not being able to fix her and make her better, when I cried and cried without being able to bring her back. On 2:14 October 2016, two years ago as of 3 days ago...I held my baby for the last time as she laid in my arms and died for the second and final time. This time, they didn't try to bring her back, this time Mike and I had given permission to shut the machines off and remove her from echmo. This time we had to make the choice to allow our baby girl to die. To truly end her battle with her aggressive and ugly cancer, to end her battle with the anti-bacteria resistant c-diff and ecoli and now what appeared to be a new fungal infection. We gave permission for her body to relax, for her heart and mind to be at peace, for her soul to be in a less painful, less stressful place. Two years ago, on October 24, 2016 at 2:14 pm, my baby girl - Bryanna Rose Kitchen went to heaven and became an angel.
For 2 years my children have had to deal with the fact that Bryanna has died. For 2 years, my children have had to deal with the fact that they feel an unimaginable void that most other kids do not ever feel. They have to go to school where their friends get to talk about their sister, knowing that they are coming home to pictures, some memories and no sister. My kids are faced with the fear of death and cancer in a way that most grown ups never have to face. Evey's number one fear is to die. That is not unrealistic - she saw her sister die, she had to bury her sister.
That's only part of their struggle.
This summer, I made a really difficult decision to move from our apartment that we lived with Bryanna, into a bigger and beautiful home. It was an incredibly difficult decision because we could all see Bryanna in the apartment. We could remember her walking and saying and doing things there. Now, we were moving into a home where she never lived, where she never left her mark. I had to take her stuff off the wall that together we put up. I love our place, and I do believe she is with us here, but the nights where I stand in our hallway and I look at both kids rooms - the first time that they each have their own room, I am incredibly saddened by the fact that there is only two rooms. Part of the reason that I made this decision to move was because Evey no longer slept in the room that she shared with Bryanna. She still says to me at times that it's really lonely without her at night. I completely understand. I feel the same way - I no longer get to have our 10 minute ice cream dates at night after Evey and Liam fall asleep. I get it.
Three days ago marked her 2 year anniversary of becoming an angel. It marked another day, another year that we survived without her. It marked another day where our reality is so starkly painful and true.
There are many people who have so graciously and lovingly been there for us right here locally, across the country and even internationally. We are so blessed to know that Bryanna has touched so many people that still love her and still remember and think about her.
There are also those who don't understand why we still celebrate these anniversaries, birthdays, little things that happen throughout the year. I understand that they don't know what to think, I understand that grief is awkward and uncomfortable for those who are not faced with the same reality or choose to not be faced with the same reality of the death of a beautiful girl. The fact is, this is a reality that hits home to so many families...but the truth is if you don't go through it, you don't really know how it feels. I didn't...until I did.
But the truth that is heard from so many beavered families are that society often times (excluding the core group of supporters) puts a time limit on grief. Society often puts expectation on grief. Society can at times put unreasonable rules on grief. I am not a medical expect, or a mental health, grief specialist, if you will. I am only just a mom who is trying to get through the death of her child, trying to get her two other children through the death of their sister. But what I can say is that often times we as the bereaved families hear of the 5 steps of grief that we are going through. Having steps of grief makes sense, because as a society, we are governed by rules. If there are steps that one would go through to get through a break up, a divorce, trauma...then naturally it would make sense that there would be the same for grief. But honestly, why do I have to follow those steps? My grief is different from another mom's grief and is different from my children's grief. My grief is different from Bryanna's dad's grief, and her friend's grief. My grief is different from those who stay close and celebrate Bryanna with us and those who have chosen to distance themselves to protect from the inconvenient, uncomfortable "stages" of grief. I have spoken to many grieving parents, and many of say the same thing. We grieve differently and not necessarily in the order of the "steps" established by society. In fact, we tend to jump around in our grief. At times, we may feel like we can't get out of bed, and other times are happy that our child is no longer in the pain and fear that we knew that they were in. Other times we are angry..some parent's more than others, then back to the first stage of grief of denial. Then what happens when we "achieve" or "satisfy" all of those steps of grief? Does that suddenly make us forget about our pain, or the fact that we can't hold our child anymore? Expectations, rules, stages - they don't always apply to grief even though it would be easier and more convenient to package them in a box and wrap them with a bow. But if we did that, couldn't we just avoid it all around?
Grief is more like a yo-yo. Just like cancer, grief does not discriminate, it does not hold back and it is not gentle. But neither is death. Neither is cancer and neither is watching your child die.
I think what I'm trying to say is thank you. Thank you to all of those who have given us so much support and love. Thank you for allowing us to not be okay. It's okay to not be okay. If we have a day that is bad - thank you for letting it be bad. Thank you for allowing us to cry and to maybe even scream. Thank you for letting us share memories and say her name. But also, thank you for letting us laugh and reminisce. Thank you.
As discussed in length with other bereaved families who lost a child to childhood cancer, we know that this sentiment is sadly not unique.
For those that understandably see our grief as uncomfortable, that won't say Bryanna's name, that won't let us share memories...we ask for gentleness and grace. We ask for love. For understanding. Society, and often times those closest to the grieving family often ask when the anniversary celebrations, the birthday celebrations, the constant reminders and conversations stop. When is it too much, too long and bordering the line of crazy? Why do we still do all this? How long do they have to partake in these events? Would it seem insensitive to not be a part of it anymore. For those who just stop being a part of it, who make silly excuses, who label a birthday party to celebrate the life of a little child as just a barbecue or an anniversary dinner as just a gathering for dinner. Know that we are also trying to understand and be gentle and to give grace. But know that it is way harder on the grieving family. I promise you that.
When society wonders when is it long enough - the truth is never. If Bryanna was still alive, if she was still battling this horrible disease, or if she never was diagnosed with cancer, she would still be celebrated like Evey and Liam. Had Bryanna's treatment gone as planned and if her body had responded to the treatment like everyone had hoped, we would be 6 months away from the quoted length of treatment of 2.5 years. That would have been another celebration.
When I watch videos of the child ringing the bell that signals that they have completed their cancer treatments and no longer require it, my heart breaks. It breaks because while I am so happy and grateful that they were able to beat this horrible disease and have a chance at a life of happiness and opportunities, I know that Bryanna will never get that.
When society asks when is enough - I ask that you remember that I will never stop celebrating my baby girl. We owe it to Bryanna and all the children that have died from childhood cancer to NEVER stop celebrating their lives and to continue to share their stories. If we don't, then not only does it diminish their existence in this world, but it also does not help get awareness to the plight of these children, to get awareness that the treatment was not enough, that there are more times than not that it is not enough and that too many kids are dying. If we don't continue to speak our child's name, then how would the world even know that there are so many kids that are diagnosed and that so many kids are more than just cancer. How would we be able to get awareness of the siblings left behind? As hard as it is to say, cancer stopped for Bryanna the day that she died. I would much rather say that it stopped because she was cured, but the reality is that it stopped when she died. But for Evey and Liam, cancer is something that they deal with every single day. It has invoked a fear in them that no amount of comfort can take away. It has put a seriousness in their life that no parent ever wants to see. It has become a daily reminder of what they lost, of what they miss every single day. It is a reminder of what I lost every single day.
Three days ago, we celebrated the 2 year anniversary that Bryanna became an angel. We did it with the love and support of the team of family and friends that are their for us. Three days ago we went to the cemetery, to stand in front of our daughter's grave and tell her how much she still means, that we love her and that she will never be forgotten. Three days ago, we had a dinner to celebrate her life and to share stories. Three days ago, I was unable to write. I was unable to share words with anyone. I was unable to cry, I just felt broken. Three days ago today was a stark reminder of what I lost. But so is every single day of the year.
This is why Bryanna's Love, Inc. is such an important foundation to us. This is a way that I am able to put my energy, my grief, my pain somewhere productive and not fall into the dark hole that calls so many of us bereaved parents and is always lurking nearby. It's a way for me to keep telling Bryanna's story. This is the way that my children can understand that they are not alone, that Bryanna is sadly not the only child to battle childhood cancer. This is my way of sharing the love that Bryanna had with so many people.
My children are faced with very difficult things in life- more than I would have ever have wanted them to have experienced. Through that, my children have all had special needs. Some a lot more severe than the other...some a lot more noticeable than the other. At the end of the day, none of that matters. What matters is that we continue to get through the day, enjoy the sunshine when we can, open the blinds and feed the dog. Through the various therapies and crazy schedules, we try to have fun and go to the movies. We spend it together, we love. We chat. We Live. We try to get through missing Bryanna. Having these special needs makes some of this a lot harder to do. It makes it a lot harder to explain and to get through. It also at times makes the feelings a lot more noticeable. But it is real. It is the painful truth of the void where Bryanna should be. It is a lot more noticeable by us that there is an extra chair at the table, and her shoes are still in the closet. It is a lot more noticeable for my kids when I hang the stocking the Bryanna picked out at Christmas and the many stuffed animals they snuggle at night.
Every single day the empty void of where Bryanna should be is noticed by us. Every single day Bryanna is loved and missed.
If ever you wonder when enough is enough. Think about a little girl at 2:14 on October 24. Think about a child who cried themselves to sleep because they were afraid to die. Think about the extraordinary pain that they endured to try to treat the one thing that we hear about the most in the clinical trial - cancer. If you ever wonder when enough is enough, remember that on October 24, 2016 at 2:14 only 3 months after her 9th birthday Bryanna became an angel. Remember that for 9 years that little girl was celebrated, her stories shared, her struggles were real and her laughter was heard.
Remember that Bryanna Rose Kitchen matters. Remember that every child that has passed matters.
October 24, 2016 at 2:14 a beautiful angel was born.
October 24, 2016 at 2:14, no more pain or fear was felt by a beautiful 9 year old girl
October 24, 2016 at 2:14, lives were shattered, hearts were broken
October 24, 2016 at 2:14 - Bryanna Rose Kitchen lost her battle to Early T-Cell Precursor Acute Lymphoblastic Leukemia.
It's been quite a while since I last posted an entry in my blog. A lot has happened since that last post. You may wonder what happened in that time that I chose not to post my thoughts. Well, simply said- I lost my voice. I lost my courage to share my thoughts. I no longer felt brave. I was merely surviving each day. I was surviving knowing that my daughter didn't survive, so I pushed through and tried even harder to get through it all. And then during our time of grief, when I was just trying to make sure that we were doing more than surviving, that we were living - judgement happened. Yes, surprisingly, a couple of people voiced their judgment and opinions in the worst way possible on my parenting. They voiced their judgment on the death of Bryanna, on the cancer. They voiced their judgment on the fire that took place now 3 years ago that started in our neighbor's apartment and stripped us of everything we owned. They voiced their judgment on a whole lot of things that struck me to the core. It stripped me of all the courage I was mustering to get up each day and put on a brave face and step out into the world. It forced me to feel the need to retreat and to trust only those closest to me. It made me feel the desperate need to suddenly shield my kids from the evils in the world...to protect them even more from the world.
But now, some time has passed, and I am at a place where I need to find a way to get past that. To trust those around me and know that sharing my grief is okay, it is safe and it is important. For anyone who doesn't know me - and as you read my blogs - please know that my number one priority is the safety and health and well being of my children...all of them. I may share a few things about stuff they do or say, but out of respect for them, I use caution on what I share. They will always be my number one priority.
So, putting all that mess to rest, the bottom line is that Bryanna died. She died after battling a horribly painful and scary disease. The only solace I get in her death is to know that she is no longer in pain or in fear. I know that she did not feel pain when she died. I know that for a fact. Now as I sit here over a year after laying in that hospital bed with Bryanna and holding her, telling her that it is okay for her to go to sleep. Telling her that we love her and that we are so very proud of her - as I laid there panicking because her body was no longer warm. As we walked out of the hospital knowing we now had to tell Evey and Liam. As we sat down with them that miserable night and told them that Bryanna will never come home - As I remember all these details in distinct detail, I am also forced to make sure I am present for Evey and Liam. I make an effort to look at the kids when they are talking to me. I put my phone down at dinner and focus on talking about silly things that took place during their day. I make a point to tell Evey and Liam that they are beautiful, that they are brave, courageous, strong, silly, kind. I make a point to tell them how much they matter, and how much I love them. Truly, with all my heart. Of all things to contend with in our life these days, that is the easiest. Evey and Liam are the light shining in the dark days. Evey and Liam have given me the purpose that I know I would not have had after Bryanna died. I'm so grateful to have been blessed with my kids.
Life is a funny thing. It really is. It is not at all like I had imagined or expected it to be. With all the challenges that each of my kids have faced through the years, and still do face, life keeps me incredibly busy in a day. I sit down at the end of the day thankful that we made it through another day. As hard as it is, I can only imagine how difficult it is for the kids. Liam has started to "get the angrys" and growls when he is frustrated, and Evey gets really upset at bedtime. Why you may wonder? Because it doesn't matter how much time has passed, the fact is that we still and will always have a hole that just can't be filled. The fact is, the kids still go to school where life goes on, but Bryanna isn't there. The fact is, we have an empty row of seats in our car that we see every day. We have Bryanna's toys and stuffed animals that are mixed with their toys, yet they know exactly whose they are. The fact is, the kids equate time with "Before Bryanna died, or after she died". The fact is, we have a bedroom that once was shared between Evey and Bryanna and is now only used during the day. We have Easter celebrated with only two kids, not three...that means two Easter baskets. Not Three. We have stockings for all three kids during christmas, but only 2 are filled. Life moves on for everyone around us, as it should. But the fact is, Evey and Liam's friends get to go home and annoy or be annoyed by their sister and they don't. It is easy to forget that grief continues even when the world keeps turning.
Yes, life is a funny thing. I try to find humor in as much as I can these days, because we have to live...but I find it interesting how different each year is. And it's not easy. But here's the thing - with this comes learning. It comes a deeper understanding of what has to happen. It comes knowledge of pain and suffering, but also of healing. With this life comes compassion and love...love like I never knew I could feel.
Life is hard. You may see me and say - Wow, you look so great. But did you look into my eyes? Because if you did, you would see life. I don't really know how to answer the "how are you question". Because when I'm okay, I'm not sure that I really am. But do you really want to hear that? For those who truly do care -I see it and I appreciate it so much. I am grateful for the people who have reached out to me and that listen. I love all of you. Life is powerful and as I sit here alone on my couch while the kids sleeps and Levi lays by my feet, I am humbled by that power. I sit back and relish in the tasks that we do everyday to live. Evey's job is to open the blinds in the house every day and Liam's job is to feed levi. Not just a scoop of kibble, but also to add his favorite wet food to it. This is there job. Because these are signs of life. This is living - opening the blinds makes us take pause and look at the deer or woodchuck grazing behind our house. It gives us pause to look at the sky and the sun, the moon and the stars. Feeding Levi allows him to thrive and be healthy...it's a sign of life. It is moving forward in our own way. They don't know all this, but one day they will. I hope that these little tasks will help them as we continue to take it day by day. I look forward to the day where my eyes say more than just survival.
In the mean time, when I am not completely busy and occupied with the kids and work, I am growing our foundation that we set up in honor of Bryanna. We want to share her love with the world, with the kids that are trying to survive just like she did. With that, I am organizing a walk/run in Maryland on 9/8/2018. It is a crazy and huge undertaking, but it feels right. I can't let Bryanna's memory fade away. I need people to know her story. I need people to know that she too mattered. The 4% in funding that we keep hearing about for cancer research is my 100%. I lost 100% of my baby girl. Hopefully as I work on Bryanna's Love we can help others and share Bryanna's love like she was meant to do. Hopefully with that, I will no longer survive, I will live. Love is a powerful thing and leads to even more amazing things. It leads to living, not just surviving. And that my friends, is a force to be reckoned with.
Last night was back to school night at Evey's school. That meant that we went to back to school night, listened to the information given and met with Evey's teacher for questions. Only Evey's teacher. We should in reality be meeting with Evey and Bryanna's teacher. We should be running from one side of the school to the other to make sure we meet both meetings. But we are not.
Last week we met with Evey's teacher. We always set up a meet and greet before school starts to help ease the transition, the stress and the nerves that come with the start of school. We started that when Bryanna was in First Grade. This year we only met Evey's second grade teacher. Bryanna did not have a 5th grade Teacher. We do not get to hear all about middle school transition and the last year of elementary school.
This Tuesday was the first day of 2nd grade for Evey.
Two years ago, we took a picture of Evey and Bryanna on their first day (Evey was in Kindergarten and Bryanna in Third Grade). It was a day of excitement and nerves and lots of stories after school.
Bryanna loving her new boots and posing with Evey and Liam on the way to school. Out of respect for Evey and Liam, I have covered their faces to protect their identity.
Bryanna First day of 2nd Grade
Bryanna and Evey first day of school 2 years ago (Evey was in Kindergarten and Bryanna was in 3rd grade)
Last year, I took Evey to her first day of school, met her class in the cafeteria, gave her lots of love and then rushed to the hospital to be with Bryanna. I still remember her face when I walked in her room...
This year, I took Evey to her first day, met with her class in the cafeteria, gave her lots of love and then went to the cemetery to sit with Bryanna's angel puppy, at Bryanna's grave site.
Please don't ever take your child, your husband, your wife or anyone in your family for granted.
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