Grief and Grace -- Remembering a Strong and Beautiful Little Girl

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.

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


www.bryannaslove.org
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The Power to Live

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.

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www.bryannaslove.org

First Week of School

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.

I wish this on no one. Cancer sucks.

Awareness is survival

September is Pediatric Cancer Awareness Month. It is a very important month...but so is every other day of the year. We need to love and be aware every day of the year. Life is short...these kids need help making it longer.

When we were in the hospital with bryanna last September, we knew that it was pediatric awareness month - but as we sat by Bryanna's side as she battled ETP-ALL, the brutal chemo therapy, nausea, fatigue, overall sickness and then septic shock leading to intubation (The first of 2 times that she required life support)...all in the month of September...I couldn't stop to think about awareness or funding or all the people who are rallying around the nation to help kids like Bryanna. I was not even remotely thinking about cancer awareness, lighting the night, lighting it up gold or any other slogan. I only focused on loving my dying little girl. I focused on supporting my two other kids (who are equally as important) who were struggling to make sense of cancer. I was trying to eat and drink something each day beyond the cold cup of coffee I got sometime early in the morning that day. I was trying to be aware of the immense exhaustion and stress that Mike was dealing with as he had to continue working so that we would not lose our clients. I was aware of the guilt we both felt when we weren't by her side, even though we knew one of us was always by her side. I was aware of that Mike would make sure my gas tank was full so that I wouldn't have to stop to get gas when I was so exhausted. I was aware of the sorrow and fear in the eyes of the parents on hemonc. I saw and was aware of the encouragement from the team when I would rock the halls with Bryanna and annoy her by singing the same song over and over. They knew that these moments were miserable and painful but so important to her. They also knew the amount of energy it took me to put on that brave and happy face and sing and encourage her as we circled the floor in her special wheelchair - reclined, padded with pillows and secured with a seat belt. It was a time where every being in our body was praying for a miracle, still believing that she would be able to beat this.

September was a month where we were already adjusted to our new routine. We no longer were foreign to the staff, to the hospital or to the treatment. We made friends with the janitors and the parking attendants. We often found a special note from the janitor reminding us to smile and to take care of ourselves. We would find our cars parked in the closest spot to the door by the elevators that we would use after using valets on the mornings that there was no parking. This was not by chance. We would have conversations with the lady at registration about our kids, we would give updates to people we met in the cafeteria. We were surviving. I would show a brave and encouraging face to Bryanna, get in my car and scream and cry. I would compose myself once again and be brave in front of Evey and Liam. Cancer meant that the short weekend that Bryanna was home, Mike and I stayed up literally all night to ensure that she got her medicine. Cancer meant that this same weekend, we missed my brother's wedding. Cancer meant that we would double check the dosage that we drew up to make sure that that narcotics, anti-nausea and every other one of the 15 drugs prescribed to Bryanna was given correctly at 1 am and 4 am and all throughout the day.

Cancer is telling Evey and Liam that Bryanna is going to beat it, and that she won't die. Cancer is being confronted by the kids demanding to know why she died when I promised she wasn't going to. Cancer is not finding the right words, not feeling like you did enough and not being able to make it better. Cancer is telling people that you are okay, but really none of us are.

Cancer is exhausting-scary-messy-painful-feeding tube-TPN- potty troubling- vomiting- cleaning - requiring bravery disease. That is the face of cancer. Cancer meant that while I was waiting for Mike in the hall by the cafeteria, a random woman walked over and gave me a hug...because I was leaning against the wall crying...not caring who saw me.

Cancer is realizing that someone stopped.

Cancer affects the patient so greatly that should you survive, it is absolutely life changing. Had Bryanna survived, she would have been met with severe side affects such as a certain infertility, secondary cancers, and had she survived long enough to get radiation - she would have been affected intellectually. Cancer is not a disease that you take a pill and move on. It is a life changing, soul searching long term ordeal. It affects every part of your being. It is watching your daughter realize that she is losing her hair. It is hearing your 9 year old daughter say she knows she is going to die. It is hearing your child scream and beg for the pain to stop. Cancer is watching your child beg for the nurse to hurry with her sedation before her weekly IT because she knew it was the only way she didn't feel pain. Cancer is watching your healthy daughter become frail and pale. It is watching the life go out of her eyes, it is holding her in the middle of the night because she is too scared to be by herself. Cancer means that you run across the hospital down two floors all the way to the cafeteria 5 minutes before it closes for the pizza that she is craving. You go because you would do anything for her, and this is the first time in a week she asked for food. Cancer means that you end up eating that pizza cold across the room from her because she can't handle the smell of it and no longer has an appetite. Cancer means that Mike goes to the ends of the earth to get cottage cheese when that's what she was craving - and when no one would help him, he went into the kitchen to ask the guy to give it to him, which he of course then purchased. Cancer to a parent means you do what you have to do to make your child okay. Cancer meant that the cottage cheese was put in the refrigerator and never eaten because she couldn't stop throwing up. Cancer means that you can't hold your baby girl because you are so run down that you got sick. Holding your child at that point now meant that you could literally kill her from the virus that you have.

Cancer means that your little girl goes from looking healthy (even though you knew something was wrong)

... to being so sick she couldn't sit unsupported...

So sick that she only had energy to draw a circle...one time.

and so sick that she couldn't wake up when super heroes came and visited.

Now we just have pictures.

We just have memories.
Memories that we hope to never forget because we know we can never make any more with Bryanna. This is what cancer means.

Now, as I sit here in my kitchen and not in the hospital, with Evey and Liam making a fort without Bryanna...as I sit here thinking about cancer awareness, I am painfully aware what pediatric cancer is. I am painfully aware when I go grocery shopping, when I go back to school shopping and when I prepare the kids for a new year of school. Last year - Bryanna was in 4th grade...and the entire school year felt like an eternity. Cancer meant that last summer she was diagnosed, and then during the school year she was put on life support twice and then died. Cancer meant that we still had to get Evey and Liam through the rest of their school year. Cancer means that we still have to pick up the pieces as school starts in a few days knowing that everyone else has moved on, but we still struggle. She would have been in 5th grade. Not yet a year has passed since she has passed away and yet Cancer has made it so we are only preparing two kids to advance a year. Cancer has made it so Mike and I weigh the emotional risk of watching certain movies or going to certain places. Cancer means we do not have our beautiful Bryanna here with us.

Cancer means that we need so much more in funding...more than 4% to find better treatments and cures for pediatric cancers...and especially those such as ETP-ALL which has very little research and virtually no specific treatment protocol like AML and T-Cell ALL. This means that as much as I know what this month is, I am also painfully aware what cancer is every single day of the year. But, I am also aware that without awareness, we as a society will never fully understand the magnitude of their impact on these children. We as a society can help change the lives of these children. Because of awarness and national efforts, parents can focus on their kids and not worry about going gold. I am miserably aware that it didn't work for Bryanna...but let's continue to be aware of what is needed and work together to help other kids...No kid should have to go through what Bryanna did. No kid should have to suffer and feel the pain and fear like Bryanna did. No child should ever have to visit their sister's grave site or look for signs that she is still with them.

Cancer is isolating yet we are never alone in this. It's tough but it's not enough. We need to be aware. We need to kill the cancer so it doesn't kill our kids anymore. So, when I can no longer avoid the grocery store and I prepare myself as I get up to the register and am asked every single time if I want to donate to pediatric cancer, and as I watch the St. Judes commercials that are a constant reminder of what Bryanna went through (only they don't show the dark side of it), I remind myself that it is because of everyone coming together that one day we will have a cure. It is because we go gold in September every year that more people are aware of kids like Bryanna. It is because of this that the parents do not have to think about going gold in September when they are in the hospital with their child. It is because of this that folks are more aware of the lack of funding. People are more aware that kids die all the time. Kids like Bryanna. People become more aware that siblings like Evey and Liam are left behind. All because of cancer.

It is because of this that I hope that one day there will be no cancer.

It can't come soon enough.

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What If?

We have had a tough week this week. I'm not sure what the significance of this week is beyond the fact that it would have been the week after Bryanna was initially admitted into the hospital. At this point she would have had 2 Intrathecal chemo (Chemo in the spine to target her central nervous system) and at least 9 days worth of chemo and steroids on top of that. This is when her hell really began. The pain, the suffering, the fear...it didn't stop once she was admitted...it only just began.

It's interesting though - as we struggled this week on various levels, we also had various signs that Bryanna was with us.  As Mike and I put the kids to bed one night, we talked about Bryanna and her star. We talked about missing her but that she was here with us in our hearts. As sad as it was, there were no tears that night but an understanding. A belief that she truly was with us when we needed her. We read to the kids, turned their music on, gave them kisses and hugs and came back out to the living room. We were met with a odd sound - one that we couldn't place. We thought it was our air purifier and so we shut it off. It didn't stop. We turned the TV down, it didn't stop. Then it hit me. It was my purse buzzing. It was Buzzy, buzzing in my purse. My purse had not moved, fallen or shifted since it had been set on the floor earlier that evening. Nothing changed from the time that we had taken the kids to bed to the time that we came back out to the living room. And yet, buzzy was buzzing away.  For those who don't know - buzzy was a tool that we used to help distract and get Bryanna through some of the scariest treatments. It is a bee shaped little plastic thing that  you turn on and it buzzes hard. It has only gone off on a few occasions since she passed. When we got back into our car after picking up her remains - as we sat at our usual rest stop eating taco bell on our way to Massachusetts, when we were having a tough time and everyone was a mess when we got home from camp....just random unexplainable times. It gives me goose bumps.

On our way into our house from our car after camp the next day, there was a beautiful yellow butterfly following us. It kept circling us and made me think. What if? When I mentioned it to Evey she said something that made me stop in my tracks. That same day at camp, the same colored butterfly kept bugging her. It kept circling close to her head and flapping it's wings next to her ears. As she said, she thought it might be Bryanna, but it wouldn't stop bugging her and it was annoying. I laughed when she said that and reminded her that Bryanna and her used to annoy each other at bedtime and many other times during the day just because you knew you could. But even after that, you guys were best friends and loved each other so much. What if that was Bryanna saying I'm here with you...and I'll annoy you like I used to? What if?

This week, as I was leaving camp, a little girl was being greeted at camp. Everyone was so super excited to see her. They said (Spelling is likely different but pronunciation was the same) "Bryanna!! We missed you so much! We are so happy to see you Bryanna!".  I understand that there are many special Bryanna's in this world. But the timing of hearing that was gut wrenching. I don't often hear the same pronunciation of the name so it made me stop for a moment.  Then I carried on and was so grateful that that little girl got the greeting of a lifetime - just like every other kid that went through those doors. The smile that child had hearing her name reminded me of my Bryanna. They made sure she felt special. They made sure she knew she mattered. They made sure she felt loved.

There are so many ways to justify many of the things that happen during our days. So many reasons that a butterfly might be flying around us, buzzy may have gone off, interesting reflections are seen from her headstone. So many things that can be scientifically or logically explained. But then again, can they? What if the explanation defies science? What if there was more to it? What if it truly is a sign?

What if we could see the invisible. What if we could see what we could feel. What if our beliefs and thoughts were so innocent and pure like children...children who see so much more than we see. What if we could put our insecurities aside and just let things happen. Would we see more than we expect? Would we feel something more powerful than we could ever imagine? What if?

Today, the kids thought they would quiz me on their favorite things in life. Talk about loaded questions. They are never the same. Seriously...their favorite things are NEVER THE SAME. How is a mom supposed to keep up with their never ending thirst for a new love? Don't get me wrong - I appreciate that they like so many different things...all the time, but it would be easier if Evey had that one lovey or that one favorite thing. Always keeping me on my toes.
So, when asked what her 4 favorite things she wants to be when she grows up, and her 2 favorite foods - I did the best thing I could think of. I said, I obviously know what they are, but I think you should tell me what they are so you can't change your mind when I say it. Ummm...save me please.
So she said...that's fair. My favorite things are: 1 Unicorns (obvy..everyone should be a unicorn), 2. Minion (well, that's only natural), 3. Firefighter (totally didn't see that one coming) and last but not least a Dolphin. (That makes sense, since we live in the water).  She was so excited that I was thinking all the same things. Thank goodness for the all knowing mommy sense. phew. Then it went to her loveys (She doesn't have nor has she ever had a lovey)...so we started it again. Thankfully, I was "Thinking" the same thing she had said.  Evey had stars in her eyes.
Liam and I went through the same process. I am so thankful for my all knowing thoughts, because obviously I knew he wanted to be a chocolate covered minion. (seriously...how???).

Our silly moments like these gets us through the tough moments like this week.  I am so grateful that I can still give the perception that I know everything...I know that the day will come when they will think that I know nothing. So for now...I'm going to live each moment and enjoy it. I'm going take the time to think about those special moments when the butterflies flutter around our ear and buzzy goes off. I'm going to embrace all the moments that make us say "What if?" I'm going to live in the love that the kids show and continue to be grateful and blessed that I still get to physically hold them and embrace and show that love back to them. I'm going to let it continue to be okay for us to stop and say "What if?". We are going to continue to embrace the signs that Bryanna may be with us when we need her. She is no longer in pain, and no longer in fear. What if she really was here with us? What if that really is a sign?  What if?

The Obstacle Along The Way

Going through life without Bryanna has been trying. It has been grueling. It has made me do a lot of soul searching. Getting through our days with just the 4 of us, just the 2 kids going to camp is still an adjustment. Nothing seems to fit right without Bryanna. Keeping the kids in camp and having a routine has been crucial to us functioning on a day to day basis. Anyone who knows me knows that I'm a stickler for routines...kids love routines...my kids especially do much better with routine. But sometimes, as we walk this road that we feel is somewhat messy, we somehow keep coming up to a wall. A wall that brings a kink to our routine. It brings anxiety and stress and often times more tears and many reminders of what we don't have any more. It reminds us of our reality.

But yet as we try to get through these various obstacles, Evey and Liam remind me about what appreciation is. What love is. What grace is.  From the outside, we are smiling, we are laughing we are doing our best to enjoy each moment. By golly - we know only too well how vulnerable each moment is, how quickly each moment can be taken from you. So we do our best. But afterwards and often during, behind closed car doors, closed house doors, closed bathroom doors - we are not able to always laugh. We are not always able to smile and we have to remind ourselves that it is really okay to enjoy each moment but it is also okay to not be okay. We remind ourselves that Bryanna would have been living life to the fullest, and would have wanted us to do the same. But it is hard.

The kids struggle just as much as we do, just in different ways. They have their tough days at camp - some days are better than others. During the past few weeks of camp, Evey struggled a great deal and occasionally had to come home. She struggled with being only a stones throw away from where Bryanna used to hang out. She struggles with the talk of God and heaven because in her mind, God is being selfish by keeping Bryanna with him when she wants Bryanna here with her. I understand this. So yes, there are times that the stress of being at camp is not productive or helpful, and those are the days that we snuggle or run errands together.  Today was a tough day for Liam. His day started great because it was raining - Rainy days at camp means everyone is in the same building...which means that Evey is close to him. He has such bad separation anxiety these days, and knowing that he can bump into Evey or see her throughout the day gave him so much relief. Until I left. Unfortunately, he couldn't get through the day without a lot of one on one emotional support. As much as I appreciate everything they do for him, it was a good idea to come home and snuggle and take the stress off of him. So we snuggled, he napped and then we made bread.

So this is where once again, my kids absolutely amaze me. Cooking and baking are not a foreign concept to me. I typically love cooking and cook most of our meals from scratch with fresh vegetables and fruits and meats because of my food allergies. When Bryanna was a baby, we were in a much tougher financial place and so I made even more things from scratch - breads, pastas...everything that I could.  So cooking has always been something I have been good at and I enjoy.   But as I try to get through the loss of Bryanna and try to still be present during the day and all the while being a functioning adult who contributes to society, I have found cooking and baking to be incredibly taxing. Yes, I no longer go out of my way to buy disposable plates now, but cooking still isn't exciting. Sometimes I dream of a chef magically preparing amazing meals for us...even if it is just grilled cheese. But this too is part of being present, of living...and so I baked bread. Don't ask me why. I haven't figured that one out yet either. :)

So back to making bread with Liam. He was super excited to do this together...and I used a recipe that if I had sat back and thought about it, didn't work. The bread didn't form like it was supposed to (too much water with the yeast...which I have never done before), and I didn't have enough flour to fix it. So, we decided to still see if it would rise and what would happen.  Liam was so excited at watching the progression of yeast bread growing. It's these simple things that make it worth it. Even though I knew that this was not going to be bread...perhaps a hockey puck shaped like bread, but nothing remotely similar to bread, in Liam's eyes - we just made the best, most fluffy magical puffy bread that ever was made to man.

After it was baked and my suspicion turned out to be correct - the kids wanted to try it. The inside never fluffed up. Yet, they loved it. Liam very carefully explained how we should try again so that it becomes big and fluffy when it is cooked, but that it was still amazing. Evey said that it was the most amazing bread she has ever smelled, that it was "very good" and that even though I don't think it cooked right, it was the best bread she had ever tasted because we made it.

Yes, life is hard. Our bread was yet again another obstacle in the road. So what if our bread didn't turn out the way we expected it to. We tried. We got all the ingredients together, we measured, we mixed and we laughed. We together created amazement and excitement in the eyes of a little guy that had so much trouble finding the good in things this morning. We sat together and critiqued this bread (which I might add was not the least bit yummy), and talked about how delicious it was because we made it.   We tried, and we conquered.

The day after Bryanna was admitted.
We thought she only had Meningitis

August 1st was the day that Bryanna was admitted to Children's National Medical Center for Meningitis. It was the day that everything started (though I know that she had been battling it for much longer). It was a tough day...and leading up to it Evey said...let's have a party on that day. So we made an amazing ice cream sunday for dinner and a tiny mexican pizza for desert. Instead of crying and being miserable, my beautiful little girl wanted to celebrate Bryanna for everything she went through. She wanted to give us a moment of happiness because why not. I couldn't think of a better time for ice cream sundays. I appreciate how much she tries to find the good in life, even when it feels like there is more bad than good.

 I struggled with the upcoming August 3rd. That was the day that Bryanna was diagnosed with Leukemia (we still didn't know that it was ETP-ALL). At that time, I thought it was the worst day of my life. I'm so glad I didn't know what was yet to come. I don't think my heart could have handled it. Flash forward to last week, I dreaded that day - I didn't know how we were going to get through that day...yet another milestone if you will. How did time pass so quickly??! It was a day that I had assumed that we would be able to look back at and talk about with and hug Bryanna, while telling her how proud we were of her and that she's got this. But that's not the case. That's not our reality.

This was the morning that Bryanna was Diagnosed with Leukemia (At this point, they thought it was AML). Treatment for Meningitis was no longer effective and she was getting sicker by the minute. 

So the 3rd came and in true "us" fashion, a huge obstacle came our way. The electrical pole directly outside of our complex broke and knocked the power lines down. That means, no cars could go in or out. That meant that we had to quickly come up with an alternate plan for picking the kids up from camp...only 2 hours before camp was to be over. So we called camp, asked them to bus the kids to the closest location and Mike and I set out on foot to go pick them up. By car, that route took them only 5 minutes away. On foot and only being able to take the main road part of the way due to the redirected traffic, it took us 45 minutes to get there. We got the kids dinner and then set back on our way home before the upcoming storm (it started thundering), could come through. With Liam asleep on my back (I had him on my backpack much like how you would carry a baby...it's amazing actually), and mike and I switching off carrying him and Evey doing her best to keep up...we started walking home. An hour and a half later we got to our street where the electric company was fixing the wires. Because of that, no one was able to even walk down the street any more. And the sky opened up. So here we are, almost 2 hours later after setting home on foot, through the crazy traffic jam and then eerily empty section of the road by our house (it was shut down), we were stuck in a big rain storm only a stones throw from our home.  Yet there we were...on another day that we were afraid to face...jumping over yet another obstacle...laughing and triumphing most of the way. Yes, we did go under a fence and through tall grass when we couldn't get down the other roads...but we laughed the whole way. It was very weird how just when you don't think you can get through it, another curve ball is thrown our way...and it turned out to be a fun adventure. Sure, there were some squabbles, and yes it was hot, exhausting and slightly stressful. But we laughed, and we joked about having to get home before the zombies came out during this apocalypse. We had fun. We made the best of our wall and we once again got through it. Together. As a team.

So yes, life is hard. Life can suck many times throughout the day. But I'd like to think that when one of us is having a really tough time, we will continue to rally together and gently show each other how we can enjoy the seemingly yucky things in the day. And surprisingly, those yucky things don't end up being as yucky as we thought.

At the end of last week, we were at the hospital with Liam for a procedure to try to identify why he hasn't been feeling good for months. Sitting there with him was incredibly difficult. It brought back so many memories with Bryanna. As I sat there trying to not to fall apart, I realized that those memories are crappy and were full of pain and suffering and fear. But they were also full of so much love and trust and hope. It sucked to be there and relive so many of these memories...but then again, in one sense, I am lucky because at least I have those memories with my baby girl. I had the occasional moments of smiles and seconds of fun. But we were able to give her those moments and we lived them with her. I appreciate those memories.

They were always together. They always had each other's back. They were best friends. They were a team.

This is the best we can do for now. It's the best I can ask of my family. Of my kids. Of my team. Of my heart.  Missing Bryanna can hit me like a freight train in the exact moment that I think I'm okay and I actually am getting through this.  But after it does, after I pick myself back up and remind myself that I got this, I have to look at what I still have surrounding me and I remind myself how much I appreciate them. How much I appreciate life, and how much I appreciate the memories. Life is short and so I appreciate every moment that I get to hug my kids. I am grateful that I took every opportunity I could to sneak another hug or "I love you" in with Bryanna. I have been taught a hard lesson - never take anything in life for granted. Everything in life counts.

Sometimes the obstacles along the way remind us of the memories of days passed - of pain and suffering and fear...but they also remind us that there was love, trust and hope. Cancer is not pretty and death does not have mercy but we can choose to find the light in the darkest days. We have the power to choose to light our way.

I always said to Bryanna during the toughest moments "You got this and I've got you".

You've Got This and I've Got You.

Maybe she is saying that to us now.

A Story About Reassurance, Snuggles and Hugs.

It's been a while since my last post. So much has taken place since the end of June, when I last posted in this blog. A lot. Often times, I feel like this blog is therapeutic and other times I am just not sure how to put my thoughts into words. This month sneaked up to us so much faster than we thought it ever would. July always has had so much excitement for our family. It's a month of bbqs and family gatherings, it's a time to celebrate the 4th of July with fireworks and music, family and laughter. It is also the time to celebrate Bryanna's birthday. July 9th - a day that we will always remember. Bryanna is the lucky one of our three because she was born during the summer. That means, her birthday party was almost always a pool party. Evey and Liam certainly get their turn for amazing celebrations for  their birthdays...just not in the warm sun and around a pool.  This year we decided to honor Evey's request and have a luau party in honor of Bryanna. It was pretty special. It was very hard. I made a special cake that I think Bryanna would have loved - it was the most taxing cake that I have ever created. I wish she could have seen it.  Having pictures of Bryanna and Hawaiian music didn't help fill the void of her not being there. But we focused on the pool, the food and the festivities. We got through it.

The next day (which was actually her birthday), we put butterfly balloons at her grave site and then went kayaking to enjoy nature and take our minds off of missing her. The following day we were back to our everyday life and activities when reality hit. The kids didn't want to be at camp, they were sensitive and upset much of the day as I tried my best to patch the hole in my heart and theirs. It just wasn't possible. It was a stark reminder of what death means. It's not easy to get through the day without Bryanna running to snuggle before we have to get up, or hugging me at as I drop her off at camp. It's a stark reminder that pictures now take the place of her warm embrace and excited two step dancing when she was waiting for her cake to be presented. It is a stark reminder that there is a hole that cannot be filled, no matter what you put in it, no matter how busy you make yourself and no matter how loud you play the music. It's a stark reminder of the hospital walls, the hospital gowns, the hospital curtains and the hospital decor. It's a stark reminder that not everyone hits remission and goes home from the hospital. It's a stark reminder of the darkness of cancer.

 Time has passed and we have made it through. We have survived Bryanna's 10th birthday without her. Because she didn't survive cancer.

It's amazing how much sparkle Bryanna really did leave along the way. She continues to touch people that she never even knew. She was meant to sparkle. 

First time piping roses and flowers. I really think she would have loved this cake. 

Bryanna at her 9th birthday party with the hydrangea cake that I made. 

Our 4th of July festivities were strained this year. We thought long and hard how we should celebrate this day. We thought it would be a good idea to go somewhere different, do something we have never done, just so that it may be a little bit easier. But in the end, that didn't feel right. So, we went to our local town's celebration as we did last year. In true "us" fashion, we danced and sang to the music and we had a picnic. But it was different. Evey and I dug deep and tapped into our courage to request Bryanna's song by the live band. Not only did they grant that request, the put a shout out to "our baby girl in heaven who just got her wings". They made the crowd stop. The loud crowd suddenly seemed so much more in tune to the music and the words that they were saying. As we sat there, not knowing how to feel other than this incredibly huge hole, and as we try to get the kids motivated to dance and smile...we couldn't escape the fact that it will never ever be the same. We can take the same smiley selfies...which we still try to do as often as possible-  because you never know when those pictures will be all you have left...it's not easy and it's not the same. From the outside, we are a family of 4, happily taking a picture to lock that moment forever into time. But that's not us. We are a family of 5, making the best out of the worst situation, knowing that these pictures are so important. Having the pictures of Bryanna can at times make or break our day. Talking about Bryanna to Evey and Liam while showing pictures can give them a moment of peace that no amount of hugs, snuggles or reassurance can bring. There is a balance, but I am so grateful for these moments.

Last fourth of July was silly - we were dancing and having a pizza picnic and looking forward to the fireworks. Evey wore her fluffy princess skirt and was dancing to her beat, Liam was playing with the kids who loved his cars, without any prejudice or care in the world. Bryanna was trying to deal with all the little kids coming up to hug her because she was dressed as Elsa from Frozen. After about an hour of being there, she told me she wished she wore her regular clothes. She hated to be touched...and here were all these little kids looking at her with princess stars in her eyes as they thought they were in the presence of true royalty. She let them hug her, but didn't hug back. She was a trooper. She let them have their moment and breathed through hers. She once again put others before her discomfort, even though I know she would have jumped into the biggest and baggiest jumpsuit if that had been available. Unbeknownst to us, she was already battling cancer. She was already sick. Yet here she was, a picture of royalty -making a lot of little kids happy. She was amazing. They all were amazing. It was our last family holiday together.

This. Just This. Evey with so much spirit. Happy Fourth of July - 2016 when the world seemed right. 

Liam playing with a little boy that just thought he was the coolest kid in the world (I do not have the parent's permission to post this little guy, so I had to edit to protect his privacy)

Bryanna a.k.a Elsa - my most patriotic girl at the local fourth of July celebration 2016

💜💜💜💜💜

There are so many things that we deal with on an everyday basis but we try stay positive and know that we have a very special family. We have a family that extends beyond the 5 of us, a family that is close and far and that will be there with just a text or a call. As amazing as that is, we have also learned that not everyone has our back. Though I won't go into details here to once again protect the privacy of my children, we have learned some hard lessons with that as well and sadly had to put up a wall to protect our family. This is a boundary that we will have to figure out as we move forward as our family's privacy and protection is our utmost priority. There have been some people who have not had our family's best interest in mind and in doing so, put our kids in a potentially bad situation, and caused us unnecessary stress. I'm sure it would surprise them to learn though that at the end of the day, our team grew stronger, it grew bigger and we know who is really on our team. We hold strong and stand together. We get through it and we soldier on.  We protect our kids from the ugliness of the world as much as possible and like any parent, try to surround them with people that only love and support them.  It is easy to judge.  It is easy to move on, but this is our story. It is a story that continues to unfold and isn't necessarily always happy and pretty. It's a story involving ugly cries, being sad-mad, feeling a void...it is a story that involves therapy to help cope, counselors at camp who take the time to sit with the kids as they fall apart because God took Bryanna when they wanted her here. It is a story about family rallying together to  make sure we are not alone on Bryanna's birthday. It's a story about a lot of dark moments in a day but also finding the sun peaking through the clouds and taking moments to breathe.  It's a story of lots of reassurance, snuggles and hugs. It's about love. 

We know that for those families out there that spend their holidays at a grave site, for those families who picnic in front of a headstone, for those families who talk to a statue and keep the flowers fresh or prevent them from being eaten by the deer...I get it. Being at the hospital watching Bryanna fight so hard day in and day out was hell. But our hell was nothing compared to what Bryanna had to go through. Yet, she fought it with so much grace.  As I tuck Evey back into bed at 11:30 at night because she woke up and just needed a hug and a snuggle, and as I remind Liam earlier in the night for the gazillion time that though he feels alone in his bedroom, we are here with him - I am reminded of our love. I am reminded of our resilience to get through yet another trying and seemingly impossible trial in our lives. I don't know how we will get through this. I don't know when the kids will transition to new things easier and not struggle with the mention of certain things like God, Jesus and Heaven. I don't have any answers to any of this. I know that there is so much uncertainty in our days, and I know that not much can bring comfort, reassurance or healing. But I know with absolute certainty that what I see in my family - what I see in my team gives me the assurance that we will find the other side. We may not feel it now...in fact many days, I can't imagine the day when life seems easier. But, I have faith that it will be there. Yes, we will spend many days paying our respects to our baby girl's puppy angel...or more harshly...her grave. Yes, I will continue to make sure that she has beautiful flowers there with her fairy unicorn and her puppy angel. Yes, I will continue to pick the kids up from camp when it is just too much to be there without Bryanna. Yes, I will hold them in the middle of the night until they fall asleep again. I will reassure the kids that they matter and that they are not going to die. We will continue to have their back and each others no matter what this journey has in store for us.  Life isn't easy right now, but we aren't going to let it stop us from loving. We may all hate cancer, but we sure love life. 

As Liam stood at Bryanna's grave today, he said something really powerful. He said "I love you Bryanna and I will never forget you. When you are sad, I will make you happy". 

My little 4 year old spoke words that we have echoed throughout their life as a team. They resonated with him. He understood it. He got it. This moment was his moment to reassure Bryanna that he has her back. He always will. 

Bryanna's Puppy Angel and fairy garden at her headstone. I think she would have loved this all. Just wish it was in our garden and not at the cemetery. 

This is our reality. Our baby turned 10 years old on July 9th. 

Evey trying to find some peace as we celebrated Bryanna on  her 10th birthday. The strength that she continues to show when it is unbelievably hard is amazing. No child should have to face this. No child should have to lose a sister to cancer. Ever. Period.