Bryanna's Love - Give Kids a Snuggle

Approximately 2 weeks into Bryanna's admission at Children's National Hospital, 2 weeks after learning that our worst nightmare had come true...that Bryanna was fighting for her life. Two weeks after we learned that Bryanna had ETP-ALL, not AML, not T-Cell ALL...Two weeks after having to pick ourselves up, dust off the fear and produce a strength that we had know idea we had...I started a caring bridge page for Bryanna. It was to update all our friends and family of what was happening. It was a way for people to understand the severity of Bryanna's condition, though we couldn't possibly list all the horrible things she was enduring. It was a place where I found peace this time at night, when the room was dark, Bryanna was sleeping undisturbed, I knew Evey and Liam were in bed, and I had stopped working for the day. It was at this time in the night that I would update, I would pour out our day into what became one of our life lines. Caringbridge was something I resisted creating as I couldn't fathom sharing our personal struggles with the world. It seemed so unnatural. And yet, it became my bridge to the outside world. It became my connection to the world outside the walls in Bryanna's room. It was my own silent encouragement, it was the secret to my strength. It was helping me fight. Now it is my documented memory of our fight.

Bryanna's Story Profile on CaringBridge.com/bryannasteam

"Bryanna -  She is our warrior - she is our strong and brave little girl who is fighting the fight. We appreciate your support and all your prayers. She needs all she can get!  She will beat this and we will be with her every single step of the way!" - The very first thing that I noted about Bryanna's story. 

The end of her very first post on August 14, 2016:

"She is our trooper and from here on she will have to fight the hardest battle of her life.  We know that the only way to get through this is to lean on our village. To get through this, we have to ensure that she can find joy and humor in the good moments and feel okay to cry through the bad moments. We need to stand together as a family and embrace this journey with all the heart that we can muster. This is not just a journey for Bryanna, but it is one for Liam and Evey as well. They are having to work through this along side her and learn how to cope with all these very scary and confusing changes. We are strong though - Bryanna, Evey and Liam will all be okay. They will get through this with everyone's help, love and support.  For Bryanna, this is only part of her story.  There is so much more to Bryanna than cancer. She will win this battle and will show the world what she has to offer. She will continue to make people smile and she will not lose this battle. We have her back. Cancer will not win. " 

~ For Bryanna, this is only part of her story.  There is so much more to Bryanna than cancer. She will win this battle and will show the world what she has to offer. She will continue to make people smile and she will not lose this battle. We have her back. Cancer will not win.~

How true is that. There is so much more to Bryanna than Cancer. She will continue to make people smile....cancer will not win.....

God, I wish this post was a reflection about how far Bryanna has come, and that she was hitting remission, that she was reading this post with me and we were marveling at the progress she made...the strength she still had to fight...the battle that she was winning.  Instead, I have this blog to make sense of her death. Her death caused by a rare and aggressive form of cancer. 

 Directly before letting Bryanna go and again afterwards, we were asked if we would consent to a autopsy. Bryanna's body had failed in every sense of the word. The super bugs she had shut her body down. The chemo was killing her. The leukemia was killing her. The drug we had to use to foster white blood cell growth, which was her only chance of beating the infections was harvesting her cancer cells. We were growing her cancer in an effort to save her from the infection. IT all came back to cancer. We declined the autopsy. She hated to be touched - so we couldn't possibly let that happen. I remember telling Bryanna's doctor...who by the way, I have the utmost respect and consider her a friend...that this was cancer. Her body failed because of so many things...but the ultimate cause was cancer. It was cancer. 

This is only part of her story. She will show the world what she has to offer. She will continue to make people smile...how could I know the impact she would have on the world? We have started our Bryanna's Love - Give Kids a Snuggle Campaign. We have heard first hand stories of how strongly Bryanna's story has impacted them. How it had changed their life, how Bryanna has given them a deeper understanding of what love is. That Bryanna has saved their lives. Yes...we have heard of the direct impact Bryanna has had on a special someone and it saved their life. Bryanna...my beautiful little girl continues to work her magic...her love. Her story is so powerful, so meaningful...we just have to keep sharing it. 

It was so hard to get started on this campaign...to tell Bryanna's story...to remind myself that it hasn't even been a full 7 months since she passed. It feels like only yesterday when I held her...when I could smell her...when I could touch her. The only way I can get through this right now is to know that her love is being felt by so many other kids and families. It is to continue to share her story, to bring awareness to ETP-ALL, to make kids happy. It is to make sure that we as a family are working together through this and being a part of this little nugget of snuggles and love that we are trying to share. With that, we really want her love to be felt by so many. We want to do great things and know that Bryanna would have been so very proud of us. We know that she would have been so excited about these campaigns. I know for a fact that she would have been a very big part in doing this. She always wanted to help others. Now, it's our time to help her help others. We would love to invite you to join us during this campaign.  Please also feel free to follow us on facebook as we will continue to update the drop off locations for this Give Kids a Snuggle Campaign.  We will be extending this to soft blankets for the kids and the families as well, as this got us through some of the toughest nights...and we still today have them on our beds. Thank you so much for your support and we are excited to join forces again to share Bryanna's Love to those who need a snuggle and a little extra love the most. All donations will be going to the HEMONC/PICU/CICU units at Children's National Hospital. Our first campaign yielded over 300 stuffed animals in just 2 weeks. We know we can do more! We had a wonderful company help us by donating 16 build a bears that they made during a team building exercise during the last campaign! There are so many wonderful ways to collect these stuffed animals...and each and everyone of them are received with smiles and love. We hope that this campaign will yield enough stuffed animals that will help bridge the gap between Christmas and the summer months when the existing donations are depleted. We hope to grow and be able to extend this to surrounding hospitals and at some point nationally. For now, we will start slow and continue to give back to the one place that we love and appreciate so much - Children's National Medical Center

Please check out our facebook page at (www.facebook.com/bryannaslove) as we will continue to update it with new drop off locations. 

Bryanna's Love - Give Kids a Snuggle Campaign

Date: Now through the end of June 

Items Needed: Stuffed Animals and Blankets NEW with the Tags or in Original Packaging as these will be going to very medically fragile children and their families.

Drop Off Locations (More locations are pending and will be updated at a later date):
Burtonsville Elementary School
Fairland Elementary School
Banneker Middle School
Camp Sonshine (Silver Spring) (also noted on their facebook page)
Green Turtle Burtonsville
Dave and Barry's Deli
Pediatric Associates (Prosperity Drive, Silver Spring)
(A moment of Magic has sent a news letter to their followers as well!)

Auburn School

or Mail To: PO BOX 448 Burtonsville, MD. 20866

(Some business require the physical street address on Amazon - if the PO box is not accepted, please use the post office's physical address:
15210 Dino Dr, Box 448, Burtonsville, MD 20866)

Thanks so much! 

Remember - You are never alone - You always have Bryanna's Love!

  

This Sunday is mothers day. It is the day that most mom's dream of sleeping in, taking looong showers by themselves, going to the bathroom and sitting there in total peace with no mayhem taking place in the next room. It is a day that we dream that there will be no crying, no fighting and no major disasters to clean up. It is a day that we dream of chocolate and grapes being fed to us on a beach. It is a day that we dream of endless foot massages and no cooking, dishes or overall cleaning and yet the house is magically still in tact and sparkling clean. It is a day where we dream of breathing in magical spring time air, with sparkles around us as sun shines down us telling us how stinking amazing we are. Yeah, that's a dream. Queue the music screaming to a halt and the sparkles going up your mommy nose while the mirror reflecting the sun on you blinds you in the eyes. That's what people dream mommy hood is - what mother's day is.  The reality is, that is the one day a year that the kids want you up earlier than Santa Clause to show you their cute and thoughtful gifts that they have been trying to hide all week. That is the morning that you realize the wonderful masterpiece of breakfast in bed the kids bring in giggling the whole way. They are so incredibly proud of their success that they forgot that they spilled an entire container of pink sprinkles all over the table as they were pouring it on bread to serve me a sprinkle sandwich. Mother's day is not a day of rest for the weary, no - it is another day to carry on this battle of motherhood - the day when we mother's unite and say being a mom is flipping hard, and yet even on this day we still do what we were meant to do...we mother. We kiss the boo boos, we clean up sprinkles in the cracks of the table and the floor. We eat that ever so amazing bread with sprinkles...ya that was fun. We spend a few extra minutes eating the banana on the plate because that is the most palatable thing. You praise, you love, you hug, you kiss. Ya, you don't get a break. But seriously...I can't imagine spending mother's day without the three kids that gave me the opportunity to celebrate that day as a mother.
And yet here I am. A few days before mothers day wondering how I am going to get through it. Wondering how I am going to get through another day let alone the most celebrated day a mother gets a year.

It is in these moments that I remember:

Every day is mother's day. Every day is a day that your kids look up to you to know that they are okay, that they got this. It is the day like today where it is raining buckets, and we had to run through rivers (actually more specifically hot lava that was burning our feet) in the parking lot to get to school. It is days like today where Liam insists on catching rain in his umbrella upside down rather than preventing rain from hitting his head. It is in those moments that I put my umbrella over him to protect him from the bone-chilling rain. But he didn't know I did that. He kept trying to figure out why the water wasn't hitting him. He didn't know that I was shielding him from the cold, the rain, the elements in the only way that I could in that moment. It is days like when Liam comes out crying because he has a tummy ache in the middle of the night while I"m on the phone. I bend over to bring him in for a hug and it is in that precise moment that he projectile vomits in my mouth. Then immediately after on my face. I tell my sister that I will call her back. I strip my clothes, I give up on the mess on the floor for now, as this is survival at it's best. I put him on my lap to console him, clean his toes that got messy and put him back to bed. I take the longest shower I possibly could muster while reminding myself that at least he is feeling better and praying that I don't get the tummy bug. I call my sister back and was surprised to hear that she heard the entire thing and was amazed that I was still consoling him through the puke drenched face. This is what mother hood is. It is down right dirty. It can suck.  Motherhood is making sure your cute sweet little kid got all the poop out of their butt so they don't have an irritation. It's about making the first day of first grade all about Evey, making that her special day and smiling and laughing, even though you know your 4th grader will likely never attend school that year and is fighting for her life in the hospital. It's about trying not to freak out when the milk spilled all over the floor for the 20th time during dinner because you are just so stinking tired that you can't imagine having to clean something up again. But, you remind yourself that it is in these moments...it is precisely in these moments that your reaction counts. It is because you stand up and breathe, it is because you comfort and console, it is because you praise and encourage that these kids will continue to come back to you when they need you the most. They will come to you in the middle of the night. They will tell you when they did something they weren't supposed to. It is in these moments that we will know when Evey hit liam not on accident but on purpose...because she felt safe telling me. Because she felt like she should tell me and that she could tell me.  I am not a perfect parent. I am very far from that. I have made so many mistakes but we learn together.  I found out that Evey had some pizza at school. My lactose intolerant Evey who normally would take the cheese off, felt like this was the day that she was going to rise above her intolerance and eat that ever so delicious pizza with cheese at school. After 1 bite, she ended up on the potty. Long enough, that her food was thrown away and recess had started. I didn't know that. That night, dinner was later than usual. Like - much later than usual. She kept asking for a snack. I gave her a small one. Then when we realized our plans for dinner were falling through I got them happy meals at McDonalds. She started crying before hand because she was feeling cranky and upset. She told me that she didn't eat lunch and why.  My heart broke. I am supposed to protect my kids, nurish them, make them feel safe and happy...and yet, I failed to see...failed to pay attention to all the signs that screamed that she needed food. We sat in the parking lot while the kids happily ate their meals and I apologized. I told her I was so sorry for not feeding her sooner (It was 7, they normally eat around 5). That I was so sorry that I didn't see how hungry she was even though she patiently kept asking for snacks. Her response..."That's okay...I should have told you that I didn't have lunch. I guess we have to communicate better." My epic mommy fail turned into a sweet moment. That's what being a mom during an average day is like. Motherhood is following through on a promise to have thursday game night with the 4 of us. Evey has decided that every thursday (no other day) will be game night, and every Friday will be when we go out to eat. There is no compromise with her dates, no wiggle room. If we can't do either of those on the designated date, then we have to wait for that following week. She has had to compromise and bend to fit this new normal of life, she can't seem to bend on these new rules. Yet, they don't feel like rules. Tonight was our first game night since Bryanna died. It was a great night. It was tough...trying playing memory with a tired four year old and a seven year old who keeps mixing up the cards. But popcorn eased all of that. Sometimes the simplest things bring the best moments.

Bryanna posing at On the Border when we lived in Massachusetts. 

The clan eating a pizza picnic 2 days after moving into our new apartment after our apartment fire 2 years ago.

Just being us.

The first and last time that Bryanna got to go outside because her ANC was in a safe zone.

This morning, as we lay in bed looking at pictures of Bryanna, Evey and Liam conquering the world together...as we reminisce about the pictures of having a pizza picnic in our new apartment only 2 days after we moved in sans any furniture and belongings due to our apartment fire...Evey marveled at how beautiful Bryanna was. Liam kept saying how proud he was of her when he saw the picture of her sick in the hospital. They pointed out all the stuffed animals that they now keep close and snuggle that she had on her bed. Liam then said "Let's go to the hospital and see her today". Happiness came to a screaming stop. We can't. Motherhood is telling their 4 year old trying to make sense of death, of his beautiful sister's death. It is then getting the kids ready for school and consoling Evey who is no longer happy and is now saying that Bryanna is not part of our team anymore. She is so sad and hurt by not having Bryanna, her best friend, next to her to annoy her at breakfast. It's easy to sit and reminiscence and smile while we look at the pictures. It's easy to talk about what we did at certain events together. But, it's really really super hard the second we don't any more. The second that reality hits and they remember that Bryanna will never ever come home to them. It is a cold splash of water on their face when we have to remind ourselves that we can't visit Bryanna in the hospital anymore, and that no, we can't see her body. Evey really wants to just go to the place that is keeping her body. To see her and to talk to her. To find peace and to find closure. Death doesn't give the survivors what they want. We can't find peace by looking at her body, by seeing a casket or cremation box go into the ground. If anything, it's harder. Because you don't get to see the silly faces, the permanent marker make up jobs, the skits, the messy faces after a meals. You don't get to hear the sweet voice saying Mommy, or the irritated voice telling Evey or Liam to give her space. This too is motherhood. It is the dark side that very few talk about. It is knowing that I am going to wake up every day knowing that I am getting Evey and Liam through their morning, through their day without Bryanna. Motherhood right now is knowing that Cancer took my baby away at only 9 years old. Motherhood for so many moms is that realization that you cannot take the pain away, you cannot kiss the boo boo away and no amount of medicine can bring your baby back to you.

Motherhood is knowing that I can call my mom when I see the foundation laid on her grave site in preparation for her headstone and cry to tell her that they got cement all over her flowers and grave site, to cry that the flowers were all over the ground and her puppy angel moved. Other than disposing of the damaged flowers and rearranging the puppy angel, notes, gifts and flowers so they were just so, there was nothing I could do in that moment as we were leaving town. Motherhood is my mom rallying my dad and they went over and scraped off the cement from her markers in the ground, it's cleaning up the cement around the foundation and making sure puppy angel and all the beautiful gifts were still secured. Motherhood is sending her daughter a photo to assure her while she is away that Bryanna was still being taken care of. That while I could not be there to clean up her resting spot, it had been taken care of.

Motherhood is a bond that whether you like it or not you cannot get away from. Honestly, I don't know why anyone would want to. It's a sisterhood of understanding. It's knowing that you can tell your mom, sister, girlfriend that you got puked on in the mouth, in the face and pretty much were in survival mode and they don't judge. They just say...yup, been there done that. Don't get me wrong. Dad's are pretty damn great. I was raised by an amazing dad who would do anything for anyone of us at a drop of a dime. I am married to a man that always will be there for his kids no matter what. We may have our struggles, but he will always be there.  There's no denying the many dad's out their who pull their weight. We all do this together.

We do this together, because at the end of the day, it's just too hard to do alone.  I remember the evening around 5pm on August 3rd when I was told that Bryanna had Leukemia. The doctors cried with me. Just like when 9/11 happened, everyone knew what they were doing in the precise moment that they learned Bryanna's fate. They assured me that everyone would do absolutely everything to make Bryanna well again. I remember calling Mike because he had gone home shortly before the diagnosis was given. I remember calling my parents, my sister. My parents came shortly after just to sit with us. I remember every little crappy thing that happened along the way. The day we said goodbye to Bryanna, my mom sat behind me holding her knees ever so gently against me so that I wouldn't fall out of the bed as I laid next to Bryanna and Mike sat on the other side holding her with me. My mom and dad stood beside us as Mike and I had to ID her body at the funeral home, they helped arrange all the celebrations and find only the best roses for her funeral. They went out of their way to find a single red rose for Mike who used to give Bryanna a red rose for valentines day.

My heart aches for the loss of Bryanna. My heart hurts knowing that Evey and Liam feels so much pain. They still have to interact at school and function like every other kid in society, yet they have to face this reality every day. They do it with more grace and heart than I think an adult can muster. I miss Bryanna so much it hurts, every single day. But being a mother will never stop. I will always be her mommy. I will always be Evey and Liam's mom and I will do the best that I can to make sure they know how loved they are by me, by Mike, by Bryanna and everyone else. I will for sure get excited about the cute handprint and note that will be given to me on mother's day as I am woken at the crack of dawn. I will for sure look at the mother's day note/picture that is on my wall that Bryanna gave me last year. Just like every single day since October 24 of last year, I will get through another day. I will get through Mother's day. Bryanna would want me to. Evey and Liam need me to. I will not let this darkness take the honor of being a mom away from me. Even if I have to take a moment and breathe.

 I know it can be hard to find words that might ease my pain. Please know that I know this, and there is no denying that. I know some may not want to share fun news...but please do. I may not always feel social and talkative, but know that I truly appreciate your company.  Sometimes, the band of friends, of mothers, of dads, of kids...they make the toughest days of being a mom into something so wonderful.

Hug your babies because tomorrow is never guaranteed.