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.

When Brothers Step up to be Sisters when they are needed the most

One in five children who have Cancer will not survive.

 ONE in FIVE children who HAVE CANCER will NOT SURVIVE.

 That's the potent line in a St. Judes commercial depicting children fighting the fight of their life. The parents are interviewed and are heard saying that the feeling of not knowing if your child will survive is terrible. The first child who is interviewed has leukemia. She looks very sick. She is fighting so hard to survive - I sincerely hope that she does. I can't get through these commercials without crying. They don't make me mad like the happy commercials - they make me so sad. I know, it's a not very positive or optimistic of me to critique every one of these commercials. But here's the thing- I have been on every side of that. I didn't used to be a cancer mom. I would pause and reflect on how thankful I was that my kids didn't have to face such devastation...and then I would carry on with my day 30 seconds later when the commercial ended. But I then became a cancer mom in an instant when the doctor took me into a room with two other doctors whom I never met, sat me down while holding my hand and told me "I'm so sorry to tell you, but Bryanna has cancer. She has Leukemia." I  know what it feels like to be told the next day that she has AML which has a 80 percent survival rate. I remember Mike saying...but that's horrible. That means 2 out of 10 children will die. What do we have to do to make sure that's not Bryanna? Then we found out they were wrong, it was T-Cell ALL...which was even better...90% survival rate...then they realized it was so much more serious...after over a week of lab research from the brightest minds at childrens National and St. Judes they found it was ETP-ALL. This carried a 30% survival rate. That's 7 out of 10 children will not survive. That means only 3 out of 10 children will. When they do survive, they are not free of worry or illness, more often than not, they have secondary cancer caused by the treatment they were getting to battle the first cancer. Often times they cannot bear children and have many different struggles as they carry on with their daily life. If they survive.
One in Five children will not survive cancer. Bryanna was that ONE. Bryanna had less than a 30% chance of survival because she not only had one of the toughest forms of leukemia, but she had a mutated gene on top of that. One that to date does not have much research due to how rare it was. Four out of Five children WILL survive. For those kids, I am so very thankful that you have been given the strength to fight. I am so thankful that you were able to beat this awful disease and I pray that you continue to stay strong.

For the past couple of days, I have been dealing with a brutal cold....body aches, congestion, exacerbated asthma...you know...the whole gamut. Yet, all I can think about is when I felt my worst, I know that it never ever came close to what Bryanna was feeling on her good days. She fought so hard to get through each day with the most excruciating pain. Pain that opioids couldn't take away.  Nothing about cancer is good. It causes so much pain and suffering to so many people. I can't wait for the day that the commercial says Five out of Five children WILL SURVIVE Cancer. I just wish Bryanna had also been one of the survivors that could share her story.

As we sit at dinner and Evey tells us some of the struggles she has had at school...I watch both Evey and Liam. I watch how they interact with each other during these difficulties and I think back to when we had similar conversations with Bryanna at the table. Evey used to listen so intently at Bryanna's struggles and then try to give her advice...and comfort.  As Liam so wisely and calmly told Evey to "Calm down and take a deep breath. In through your nose and out through your mouth", as he demonstrated ever so calmly, and touched her arm to get her to calmly focus, I couldn't help be so incredibly proud of the little people my kids have developed into. As I struggle with this cold (which after everything my kids have gone through, I have no place to complain), I have lost my voice. This is surely a win for the world...and I thought for the kids. Yet, rather than taking advantage of that, they were so helpful and so concerned. Evey wanted to be my voice - she even called from the other room this morning when I was talking to Liam..."I told you not to use your voice. You have to rest it mom! Stop talking!". Then when she got home she asked if I spoke today and when I said I did a little...she told me in a very serious tone "I'm really disappointed with you. You have to take care of your voice so you can get better." Liam them follows with..."ya mom...so disappointed". The amount of heart, caring and love that these kids have to take care of me, when it's my job to take care of them, even if it is to tell me to stop yapping to protect my voice, it's just wise beyond their years and makes my heart sing (as Bryanna used to say). It touches me so deeply. How did I get so lucky to have kids that have weathered a few of the worst storms imaginable...and yet they still carry on. Today marks 2 years that we had that apartment fire. It marks two years since Levi alerted me to the fire and I had to make a split decision on how we got out of our home. It marks two years that we lost all of our furniture, our pictures, toys, clothes, underwear, shoes, kids artwork and pretty much everything. It marks two years that I lost all of Bryanna's things she had for the first 7 years of her life. All the things that I would have loved to have had to look at today. Yet here we are...focusing on the now, the tomorrow. Focusing on taking care of each other...focusing on our team...not our trauma.


I think back about the funny things of parenting - of the things you just look back and say...wait what?! It's these moments that really make me smile. Like the time when Liam was doing his thing, and Bryanna and Evey were tired and cranky after a long day at school and were fighting. I'm talking about an all out screaming, yelling, crying, not even rational type of fighting. Meanwhile, I'm trying to get dinner together while doing the dishes. A person can only take so much of that fighting before imagining locking themselves in a bathroom with a big bag of chocolate, 20 packs of oreos and gallon of milk. I'm not even talking about taking the time to bring a cup to dunk the oreos in. No, when you are at your wits ends, you just want to breathe and you will drink out of that jug of milk, after all you're taking one for the team...well, you are being one away from the team, so you tell yourself you are taking one for the team in that moment. Then you snap back to reality and you realize if you don't intervene in this escalating fight between two little girls, then world war three will break out resulting in lots more tears...and well, you already ate the chocolate and oreos so you can't offer that so you better make it right quick. So,  naturally, I jump in after hearing Bryanna and Evey yell that they aren't sharing their unicorns. I like to be fair of course, so I say...at my wits end of course (mind you, liam is crashing his cars, dinner's cooking, the sink of dishes are still screaming at me and I am dreaming of a quite bathroom with my 20 packs of oreos and a gallon of milk)..."you use the unicorn first and then you share it with you sister who will use it after. If you guys have a problem with that, NO ONE WILL GET TO USE THE UNICORN!" Well, that sure got their attention. I guess it made sense, because the fighting stopped. I felt quite accomplished and got back to my dinner making and dish cleaning activities feeling like I was a master at this parenting thing. Then it hit me. This was not a toy they were talking about. This was not a stuffed animal. This was not a drawing. Bryanna and Evey were fighting over an IMAGINARY unicorn. Let that really sink in for a second.  The least I could have done was given each girl their own unicorn at that point. Not sure who won, the girls or their imaginary unicorn. I was back to dreaming of my 20 packs of oreos and my gallon of milk...but the unicorn flew away with it.

I miss those silly stupid parenting moments that having three kids brought. There is a lot less chaos these days. I'm sure Evey and Liam will build up to it, and I'm sure they are waiting to unleash the mayhem...but I sure miss the girl fights. The fights about Evey not letting Bryanna sleep because she had the power to keep her awake by talking, the fights about Bryanna not letting Evey know where she kept her most important things...you know...the sisterly fights. Fights about who gets to ride the unicorns first.  Instead of sisterly rivalry, Evey now gets sad when she sees the Disney junior commercials with sisters singing the "sister sister" song from Elena of Avelor. But Liam steps right up to let her know that he is 'happy to be her sister'. We will figure things out. Yes, we are the family that had that One in Five children...but we will fight our own fight to make sure we get through this, even if we have to share our one unicorn along the way and brothers have to be sisters, even for a little bit.

Bryanna, Evey and Liam always hung out together and always had each other's back. Who would have ever have thought that Bryanna would die from cancer, Evey would be sad that she "no longer has a sister here" and Liam would tell her "I'll be your sister". 

Four out of Five children have to pick up the pieces and figure out how they now fit into their new family dynamics. One of Five children don't get a say anymore. 

Magic and the assurance that she still matters - that we all matter

The last few days have been rough because Liam has been feeling under the weather. His asthma has been flared up and he has an ear infection - a perfect recipe for sleepless nights and lots of snuggles, crankiness and lots of patience. He was feeling so miserable on Friday (the last day of his first week at big boy camp), that I had to go pick him up while they were out of town on a field trip - the field trip that he was looking forward to the most. He wasn't excited, he wasn't playing and running, he was just sitting with his counselor waiting for me to come and pick him up, waiting for the comfort of my hugs and snuggles. These are the moments that as a parent, I think...geeze...why did I send him? I knew he hadn't been feeling great the night before - for crying out loud he had been up all night miserable. But by morning he was playing and flying his plane of blocks. He was excited to go to camp. Only to find out he really was pretty sick. Epic fail.
It was hard to see him feel so sick. He fell asleep when we got home and most of the day on saturday. He was feeling so sick that he slept with his mouth open - like bryanna did when she was sick in the hospital. It was not a happy feeling to see him feel that way - even though I know he doesn't have cancer and I know it is completely different.

Bryanna and her new favorite yellow Easter egg - Easter Sunday 2016

The easter bunny came to our house over the weekend as well as nana and papa's house. Since Liam was feeling so icky, we decided to skip the Easter egg hunt on Sat. and had a mini one throughout the house here on Sunday. They were so amazed that the Easter Bunny left them little hidden treats...even in their shoes. It's amazing how far a little magic can go. But it was hard. The Easter Bunny's helper (aka me) only bought 2 baskets this year. Only 2, not 3.  We only got 2 books, 2 tooth brushes, 2 chocolate bunnies and 2 of everything else that went in the baskets. Two not Three. As I was buying these things, I noticed quite a few people looking at me through the hustle and bustle of the store - I wonder if I had that look on my face that I felt inside. It's such a conflicting feeling. It's such a sad, lonely and devastating feeling mixed with the need to make magic for Evey and Liam so they can feel happy and hopeful. They need to see that there is still magic in the world and that we can still have happiness as we take each day as they come. Easter is another holiday that we had to get through without Bryanna. I can't say that I wish we didn't have holidays because it is a stark reminder of this huge void in our hearts because we still need these holidays to have a reason to celebrate on the days that we just can't find that motivation to celebrate. It's important for us to have these so the kids see that they still matter. But the thing is, it's not just holidays that we struggle with - yes, I have heard from many people that the holidays are hardest when you lose someone you love. But to be honest, the every day mundane tasks, the everyday schedules, the everyday meals, the everyday bedtime routines, the everyday story time (and guest spots - we always would make a 'guest spot' complete with a pillow for the others who would be on the bed we were reading and we rotated each night)...even shopping for food, for tooth brushes, for hair accessories...you feel the overwhelming loss. Bryanna was my girly girl, my let's accessorize, lets paint our nails and wear dresses and pretty shoes type of girl. I look at the end caps with the different colors of nail polish, the advertisement for cute clothes or shoes, the isle at the grocery store with her favorite cheeses or foods...every day is hard. I'm not sure that it's really harder or not. I haven't figured that out. Is there really a way to quantify pain like this? Is there really a way to tell someone that is truly is harder on a certain day than not? I don't know. I'm sure her birthday will be excruciatingly hard...but we are not there yet. That is a battle for another day.

Tonight during bedtime, the kids wanted to know details about Bryanna's last days. They wanted to know if she talked, if her mouth hurt, if her eyes hurt. They wanted to know what it felt like to have the type of sickness that she had. They wanted to know if how they feel when they are sick is how she felt. The answer was no.  There is a fine line between telling them these miserable details and not scaring them - giving them what they want to know without giving them much of the devastating picture. At least not now when it is so hard for them to understand. What I told them was that Yes, Bryanna was in a lot of pain, but the doctors and nurses gave her lots of medicine so she didn't feel her pain. No, Bryanna didn't talk or move because she felt so sick that it made her really sleepy. Yes, she missed you guys so much. Yes, she fought so hard but she had no control over what would happen.  The real picture (and what I did not say because they couldn't handle this): The last 2 weeks, Bryanna was intubated. She was sedated so that her organs, which had all failed, could heal. She was sedated so that she didn't feel the extraordinary and excruciating pain that her body was plaguing her with. Pain that would make a grown man go insane. Bryanna's body was failing so fast, she had gained 34 pounds due to the extraordinary efforts to resuscitate her after going into cardiac arrest. Yes - I sat next to her bed with her primary oncologist and fellow as she went into full cardiac arrest. I saw them disconnect the ventilator and physically push air through the bag by squeezing it as they do on tv. I saw them literally hold her life in her hands. I saw them pushing so much fluid and medicine directly through her port to get it into her body as fast as they can. I saw the doctor stand on a stool and do CPR and a doctor behind her waiting to take over. I saw Bryanna be pushed into the bed with each compression as the bed was deflated so that CPR was effective.  I heard the doctor count the seconds until they reached 1 minute and 59 seconds and both doctor's hands were on her so they could seamlessly switch. I saw the main coordinating doctor get control over the room when all the people in there started to panic and yell. I saw her calm them down and center everyone before they continued to save Bryanna's life. I saw her heart rate on the monitor fall to 0. I saw her oxygen go to 0. I saw the flat lines and heard the alarms. Then they brought her back to life. I saw Bryanna die and live again. But though she fought so hard, she was too sick to be her old self. I could not tell the kids that Bryanna was hemorrhaging so badly the last week due to the anticoagulants that allowed her to be on ECMO which was the only thing saving her life, that she was bleeding from her eyes, from her nose, and from her mouth. I couldn't tell them that the last time she spoke to me was when she asked me...no begged me to not let them put the tube down her throat again. This was only days before she went into cardiac arrest. Yes, I believe she heard us, I believe she responded to us by squeezing our hands and moving her arms and blinking. I believe that each of those actions were painfully hard for her but she did.  I did not tell them that she was in so much pain that any time they had to move her she would wince...even though she wasn't fully conscious. I did not tell them that I saw her feet becoming discolored the morning we decided to let her go. I did not tell them that I panicked and asked them to stop clamping the ECMO tubes as I lay next to her and Mike held her hand. I did not tell them that I felt her heart stop beating and I saw the color leave her body. I did not tell them that yes, we did have to go and 'identify her body' at the funeral home and that I stood there crying and telling her how very sorry I was that I couldn't make her better. Evey desperately wants to see her body. She doesn't understand where it could be because it wouldn't fit in that little box that her her cremated remains. We have been very delicate about the cremation. Fire scares her so much, especially after our apt. fire almost 2 years ago. The one things we told them is that we got everyone out and the fire didn't hurt us. It is not in the cards to then tell Evey the details of what cremation is...putting a body into fire. It is something I struggle with deeply as well.  But we have explained that the beautiful spirit of Bryanna is in that box and is snuggled close to her blanket and her puppy.
I cannot imagine Evey or Liam seeing Bryanna at any point since the last time we had a movie night at the hospital. It is something that would haunt them forever. I am grateful that the memories they did have was movie and popcorn, when Bryanna could tolerate the smell. But this doesn't make it better for them. I understand that. Not much will.
Evey wants 2 jars. One jar that all the germs can go into and Bryanna could have gotten better. Another jar that we can walk into and she can wish to have anything change in life that she wants. The only thing she wants is Bryanna to come back...and a unicorn. We talked about how we can't change what has happened in life, but we can change how our life is. We have the power of choice. We can choose to have a good day or a bad day. Though it may not always be easy. So, when we are struggly without Bryanna - we are going to choose to think of a fun memory with Bryanna. Maybe, just maybe it will help us get through the unbearable.

After putting Liam to bed many times, he finally came out to the living room one last time. He said that when Evey is asleep, he feels so alone. He misses Bryanna. He asked if he could have a hug and kiss because it makes him feel better. Kiddo - I will give you as many hugs and kisses that I can possibly give you if that will  make things better. Always.

We all know it is tax time - and though we are procrastinators, this year has been a lot harder. Yes, we started them last night and are still working on them. They will be completed by the deadline, but it's hard. Adding this one last pressure to our day seems too crushing at times. We knew that we would have to go through all of our expenses during the hospital stays. We would have to tally everything up and relive those days through out receipts and bank accounts. We got through that. It's easy to put up a wall. But, as we start our taxes and we have to list that Bryanna, our 9 year old girl, passed away on October 24, 2016 - that was awful. It took a long time to get through the few questions they asked. It is devastating. We are also working with the Maryland Health Exchange - who has been really helpful and nice as well as compassionate through the process of removing her from our insurance. However, in order to get a refund on the months that we paid for her since she passed, we have to phycially show proof of her death. We have to physically take her death certificate into an office and show a rep. I understand all of this is so necessary. But it's not a birth certificate, a marriage certificate, a business license or anything happy. It is further proof that our baby girl has died. It is further proof that we need to hold on to these memories, the pictures and breathe. It is further proof that this is reality.

We could all use a hug...it makes us feel better...whatever better is.

Turbo Tax extending their condolences for our loss. 

Turbo Tax assuring us that she still matters.

Eater Sunday 2016 - The pure joy that the Easter bunny gave - pure magic

Another Day and a New Tomorrow

When you see that positive pregnancy test and hear congratulations for your pregnancy from the doctor - you are filled with dreams, hopes, worry and this sudden surprising overwhelming love. You scourer the Internet to learn every little minute detail that is happening to your body - and more excitingly, what is happening to your baby's body. You get excited and yell out that your little love is  now the size of a rice grain, a pea, a mango, a cantaloupe, a watermelon. You learn when they have their fully formed fingers and toes complete with nails, you learn when their eyes are forming and their lungs are forming. You do everything in your power to eat healthy, follow the doctor's orders and keep this little bambino growing inside of you for as long as you possibly can. When you are having your second and third child, it is all so exciting, except even more exhausting because the older kids still need your love, they still need your hugs, they still want to cause mayhem and they still are walking tornadoes, loving bundles of chaos and so full of love. As a parent, whether you are a mom or dad, you think of every possible scenario of what the child will grow up to be, you start by being so nervous yet so excited to change the delicately small diapers and burp the little baby at just the right firmness that the gas comes out but you don't cause any harm to this delicate and fragile little amazing little human. You never ever think in those days that your child will someday get one of the most catastrophic disease that would cause the most intense and painful suffering - more than any person you know had to experience. You never ever think that your child would get such a devastating disease that is so rare, that not many has heard of it, that only one institution had conducted research on it. A disease so rare, that the effects of a mutated gene is not documented into research until now.

Seeing Bryanna suffer daily and having to take methadone, oxycodone, morphine constantly throughout the day every day - and having to take merinal (synthetic THC), and virtually every other anti-nausea medication just to get through her day in addition to the ever changing chemotherapy protocols of which include weekly IT chemo, is something that I will never forget and that is so devastating and heartbreaking. Let me explain what IT chemo entailed - Bryanna would not be allowed to eat or drink from midnight the  night before the procedure, she would be taken to the OR (she became too unstable to go to the clinic's procedure room on hemonc), she would then lay there, trying to deal with the new faces, the hustle and bustle and the constant touching. She would have to hear the kids crying around her and the people talking. She would be so scared that sometimes she would talk, sometimes she would cry and many times she would completely shut down. The team would then give her sedation while I was holding her hand and talking to her, or singing one of her Katie perry songs. I was often allowed to go back to the OR with her until she was situated and then was escorted to the waiting room. I would hold puppy and animal blanket so tightly as I sat there and stared at everyone around me, not seeing anything or anyone. I would sit by her side until she would wake up and then console her every single time as she felt so sick, she felt more pain and she was scared. This was weekly...sometimes multiple times a week...in addition to the daily chemo treatment and daily/hourly medication.  This was her hell. This was darkness. She knew she was dying, she told me that many times. She told me when everyone left for the night (at least when she had a few hour break from the nurses at night), when the lights were out and when she was scared. She didn't want me to let go of her, she wanted me to hold her hand and sit next to her.  We did just that. Both mike and I sat or laid with her until after she fell asleep or could no longer tolerate being touched, whether emotionally or from the shear pain she felt throughout her body.

Why does such a young, innocent and beautiful little girl have to be given such a miserable and painful fate? How can so many people in the world do horrible things to their body and yet live a full life completely unscathed by cancer while, young kids do everything right with their growing bodies and are dealt with such devastating blows?

Every day, I see where Bryanna should be, or something she would have liked or would have done. Every day I feel the emptiness and the hole where she should be next to me, next to Evey or Liam. Every day, I feel the sadness as Mike comes home and is not greeted by Bryanna's super excited smile and hug. Every day there is a hole.

Yesterday as we went to camp in the morning and as we were driving by the cemetery, Liam randomly (yet not randomly, I'm sure) said "Here's the cemetery. Bryanna is with my teacher at camp every day." It was the simplest and most profound statement that I have ever heard Liam say about Bryanna. I know this is true. Bryanna loved camp almost as much as she loved being home and as much as animals. This was Liam's first time at camp and so I believe she was there looking out for him. It was also a tough time for him because he had to keep up with the bigger kids (he was the youngest in his group) and during the last day dealt with exacerbated asthma and an ear infection (we picked him up from camp early because of this).  I believe that Liam needed Bryanna this week and this was the first time that he has expressed that he felt, that he saw her presence. How would a 4 year old boy who struggles to articulate his speech more times than not say something like this if it weren't true? I believe Bryanna is our guardian angel, there for those who need her the most in that moment.

Evey said a prayer for Bryanna at dinner last night. She couldn't say the entire thing because she started crying too hard. But she reminded me of the power of prayer. She reminded me that we can be heard and maybe we are not alone. It's so easy to get lost in this pain and to try to get through each and every day as if we are all okay, that we are all easily putting the right foot in front of the left, but times like this may me slow down and realize that we need these moments to pray. We need to pray if that is what helps find us hope, what helps us heal and what helps us believe. This morning, Evey and I made Easter egg pancakes with bacon. Liam ate very little as he is still feeling quite icky, but they both were so excited by these colorful pancakes that suddenly had so much happiness and magic in them. Then Evey started rubbing her eyes as she often does and I realized that she wasn't suffering from allergies as she so cleverly tries to say she is, she is sad. She is so sad deep in her soul that she tries to tell everyone that her eyes are watering and she just doesn't know why. She knows why. But talking about this pain, of missing Bryanna, her best friend, only opens the floodgates and makes her feel even more sad. So after a little encouraging, she talked about how empty it felt with Bryanna's chair empty. How sad and lonely it was in this house with out her. How meal time sucks without her, even when we have fun. How she is mad because this isn't fair. So, she decided to offer Bryanna a plate full of some of her bacon and Easter egg pancakes. She made me so proud. As heartbreaking as this is, it takes a lot of strength and courage for a 7 year old to make such a gesture, such an offering to her sister who suffered so much. It was so powerful because Liam just sat and listened (rather than his usual interrupting or trying to talk with her as 4 year old dos) I can't take her pain away. I can't take Liam's pain away, but I can continue to be there with them and for them. I will continue to read stories at bed time, snuggle up for one last show, sing a song in the middle of the night when they are scared. I will continue to allow them to snuggle with me throughout the night when they are too scared or lonely. That feeling of love that I felt the moment I knew I was pregnant is the same I feel now, only intensified.

We as parents have a duty to protect our children. It is our job to nourish, clothe, protect and support. But it is more than a job to love so fiercely and unconditionally. It is a blessing.
I am so grateful that I was chosen to be Bryanna, Evey and Liam's mom. As much as losing Bryanna continues to devastate us, I have to remind myself that I was lucky enough to get 9 years to get to know this beautiful little girl that made me a mommy, to snuggle and be comforted more times than she ever knew. She showed me love in times that she had no idea I needed it the most. She played and made me smile at a park even after I found I had miscarried before Evey. She was my angel even though she never knew it.  It is such a blessing that I felt her love and she showed me and everyone around me what it means to love. I thought I knew what Love was until I had Bryanna. This little girl taught so many people the meaning of life, of living and of love.  I will be forever grateful that I was given that.  Tomorrow is Easter. It is another day and a new tomorrow.  We will need strength and grace to get through the day and we will. We always do. We have to believe that she is with us. We have to believe in Love.

Be You, Be Awesome!

Like many people, after a long day, I like to turn the tv on and relax. After dinner is cleaned up and the kids have been tucked in a hundred times, I like to think that I can sit down and watch a show. Something that I don't have to think about, something that I don't have to be present for. In the end, the show ends up as background noise as I can't quite get into my favorite shows any more. As I was going to shut off the tv, I heard a mom on a popular police show respond to an officer who was paying their respect and said "I'm sorry for your loss". She was surprised. She replied "My loss? Don't be sorry for my loss. A loss implies that you lost something that you will eventually find and get back. I will never find my daughter again."  I completely get that. I will never get to hold Bryanna again. I will never get to ask her what her favorite and least favorite part of her day was. I will never get to have her be my helper while we shopped, or have her tell me I need to accessorize more. I will never get to have our late night ice creams moments that we would have when she couldn't sleep. Those were the moments that her flood gates would open. Those are the moments that she would talk more than normal. Those are the moments that she let me snuggle with her, as much as she could tolerate.

For those of you who don't know, Bryanna had PDD-NOS - which is a highly functioning form of autism. The majority of the world, friends and community did not know. There was no reason for them to know..it didn't change who she was, it just gave us a title to get her the help she needed, the help that we needed to give her the absolute best chance to be the best, most smartest and accomplished person that she could be. We had very high hopes for this little girl who was so smart and loving. This is who Bryanna was. Bryanna struggled socially, she struggled to make friends, struggled to play with them, played like a horse or puppy on the playground rather than tag and hopscotch, struggled with loud noises...and sometimes any noise...hated to be touched and engaged on her terms. Bryanna was very literal, and often times the cutest most simplest of jokes would not resonate with her (I remember sitting in taco bell with the kids cracking joke after joke and I was the only one laughing). Bryanna needed her instructions broken down, she needed many basic explanations of common sense things that the average child her age already got. The movie HOME was a major hit in my house, because they spoke so literally. It was such an awesome feeling. I understood it. I got it. This is who Bryanna was. This is one of the special things about her that made her so uniquely wonderful. That being said, she was so smart, and caring and made it through every single day with a smile, with a laugh and with love. Through everything that was hard for her, she loved. I mean...seriously...this child LOVED. She showed me what love truly meant - the unconditional, unrelenting, non-judgmental, whole hearted love. Bryanna didn't like to sit and snuggle. She didn't hug much, she didn't like her head to be touched. But she would come and sit with me on these nights, when it was just the two of us eating a little container of ice cream, while the entire house slept. It was in these moments that Bryanna would lean in and snuggle. It was in these moments that she shared her deepest thoughts. It was in these moments that I could see her relax. No stress, no noise, no worries. Just a few minutes with ice cream and me. 

Anyone who knows me knows that I am a stickler for routines. I have to be. All three of my kids struggle with transition (though Liam a lot less than Bryanna and Evey). Change is tough for all kids, but for mine...quite a bit more. The word "Common" sense doesn't belong in my dictionary. I have learned by having my amazing kids that there is nothing "common" with the ideas set forth by society, there is nothing common about the minds of young beautiful kids, there is nothing common about being uniquely different and trying to figure out how you fit into this mold called society. Further, this world, this society, these social norms doesn't always make "sense". So really, the word "common sense" is not what I expect to see in my trusty parenting dictionary. 

The thing is, having a child (or children) on the spectrum...highly functioning or not, does not mean what I think many people expect it to mean. It doesn't mean loss of love, it doesn't mean loss of family or loss of happiness. On the contrary, I think it means more love, more family and through the struggles, a lot of happiness. 

For some reason, we can't find a lot of Bryanna's writings. Writing on random pieces of paper, a journal or in a book was how she relaxed, it was how she focused and centered herself. Yet, for some reason, it appears that she hid a lot of it. We keep finding little bits here and there. In one of the papers I found - Bryanna wrote the most surprising thing. She wrote (and I'm paraphrasing here) ' My mind doesn't work like yours. I don't understand what you understand, I don't see things the same way that you do..'.  This paper was connected to a handful of other pages where she wrote one word many many times such as notebook, pencil, dog...and so on. She was playing school and in this little nugget of writing, she was telling us that she did get it. But see, I could see how maybe some might question if we did her a disservice or maybe even an injustice for not telling her...the thing is, she seemed perfectly content and happy. She was trying to find herself, that I'm sure, but what she wrote told us that she was confident with who she was, that she was okay that her mind worked differently, that this is simply who she is.  See, I think we as a society underestimate the human mind and the human heart.  Yes, she and Evey call people 'humans' instead of 'people'. Yes, Bryanna struggled knowing the days of the week, even at the end of third grade. Yes, she had to have a visual schedule on the wall as well as step by step reminders of what she had to do to get ready for school. But, this wasn't odd, it wasn't weird, it wasn't different...it was just normal. It just was the way it was. Anyone who knew Bryanna saw that she loved life. She may have had her many struggles, but she persevered and she fought through them. She had a strong and beautiful place in the world, in this family.  Having a label that many expert clinicians diagnosed her with had no bearings on how she saw the world. Yes - it makes sense that we as society, that we as her parents and her teachers, understood that - but other than that, there was no reason for her to be treated any different than the kids at the park, or her classmates. Yes, we did have to make some concessions for her in some instances, yes, she did need quite time away from the noise, the lights and the people after going on a camp field trip to the circus which she didn't handle well....and many other instances, but she found a way that worked for her. Every day, we as parents learned something new from her. Every day we saw how brave, how strong and how courageous she was. Every day she made us, she made me...so very very proud. 

Why am I writing about one of her biggest struggles? A struggle that not many people knew about? I feel like her letter to us talking about how she saw the world different was her way of telling us that's its important for people to know that she was okay being who she was. She was okay being uniquely awesome. She was okay with the world. In the moments that she didn't understand the world, in the moments that she didn't understand why her literal understanding of the most basic thought made sense to her but not a friend...in her literal world - we got her. We understood her. We saw her. We had her back. Always - always and forever. As we always told her...just be you and be awesome!

Bryanna, Evey, Mike and I embracing the puzzle (Bryanna would have been around 3 and Evey around 1.5 ish)

April 2 was Autism awareness day - light it up blue. I know that there are mixed feelings about that day from parents across the board. I understand that there are parents struggling with a much tougher place on the spectrum, or with other disabilities. I understand that each person has their own experience and their own feeling about it. Please know that I hear you. I respect what you are saying and I know you have a struggle that no-one knows about. This is not a debate on what autism is or isn't, it isn't a debate on the new and old naming convention of autism, it isn't a debate on severity or who's struggle is more. It's a open armed hug. It is a hug for all the kids and adults...all the parents and grandparents, all the teachers and friends...all the humans having to cope with something that the world says is different. If the world just changed their perspective, then Bryanna would not have been so unique...she would just have been a little girl that did things differently. So with that, I stand with you...every person's struggle is different but through that I hope the world can find acceptance and love. 

I also say for the day I see blue on buildings and read the headlines "light it up blue".. every day is a day for something to be celebrated- be it autism, cancer, adhd, down syndrome, lung disease, depression, and the list goes on. It doesn't matter what diagnosis someone may have or not have. Every day is a day to be celebrated. It's a day to celebrate the fact that regardless of the challenge that person is up against, regardless of a diagnosis of a disease or disability, regardless of the severity, ...we should all celebrate the fact that we are living. We should celebrate that we are brave to face each and every day with the challenges that the world presents. We should celebrate that we are strong to get out of bed and get through whatever task is waiting for us that day. We need to celebrate the fact that regardless of ability, we are all 'humans', we are all loved and we all can love regardless of our ability. We should celebrate and go get donuts, chocolate cake or whatever makes you have a moment of happiness, a moment of bliss. There will always be someone who needs to say something...something to bring down that sun, something to stop your world from spinning even for just a moment. Yet, if we look through the eyes of these kids and well...'humans' who see the world differently even if it is just ever so slightly...maybe we could see a different view. Maybe we could see more love. Bryanna kept both her oncology team and ABC team on their toes because she handled treatment differently. She didn't tolerate much of the same things that the other warriors could. Not wanting to be touched changed how examines were, how she responded to pain tolerance and how they assessed her condition at the time. She made them look at the world from her view - made them see things differently. She wouldn't take no for an answer.  They saw things differently and adapted to her as much as treatment would allow. They continued to change their views to see through her eyes. They got her. I will forever be grateful and so full of love for her team, many of which I consider to be friends now.

The other day, Evey, Liam and I went to see Bryanna's puppy angel (this is taking the place of her headstone until we can pay it off and have it installed). It's beautiful and very fitting for Bryanna. Liam was wearing his now favorite hat - the hat that was given to Bryanna from a professional boxer that came to visit the kids at hemonc. He wears it to school, he wears it to the park, he wears it to the store and he would wear it to bed if we let him. He loves it because it was Bryanna's hat. So, on this day that we went to see her puppy angel (using the words "cemetery" feels so cold), he decided he wanted to leave his/her hat for her puppy angel. He thought it would make the puppy angel happy. As we were heading to the car, he realized that he really wanted it, he really needed to feel her on him. And still to this day, that hat is his comfort. 

So back to that mom in that police show - No--- my husband, my kids, our family, friends nor I will never ever be able to find what we lost. I will never be able to get my daughter back. Cancer took her too soon. I cannot change that. But what I can do is continue doing and spreading what she so passionately did...Love.

Heading home for Bryanna's one and only field trip home since being admitted at the beginning of August. She was given 4 days to boost her spirits (though not medically ready) and was able to make it 3 days before having to come back to the hospital in the morning of the 3rd day). I look cool as a cucumber here, but I was terrified to bring her home..to have her sit in a car for an hour when she hadn't been able to sit up in bed for more than half hour. Mike was sweating bullets as he was pulling the car around for fear that she would be around someone sick (we were at the ER entrance). But she needed this time. She needed to feel the fresh air on her skin and see the world outside the confines of the hospital. She needed home.

This is what heartbreak looks like. This is what love is. 

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The power to find a song that speaks to your soul

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

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

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

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

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

"...You don't have to feel

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

You just gotta

Ignite the light

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

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

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

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