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.
October 24, 2016 at 2:14 ....You are never alone.
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