What If?

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

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

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

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

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

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

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

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

The Obstacle Along The Way

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe she is saying that to us now.

A Story About Reassurance, Snuggles and Hugs.

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

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

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

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

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

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

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

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

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

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

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

💜💜💜💜💜

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

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

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

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

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

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

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

What is your story?

Life is a funny thing. We go about our day trying to put our best foot in front of the other. We look at the world around us and wonder what the person at the check out is thinking, or why the person at the gas pump was frowning. Somewhere along the way we hear or say how so many people appear to be so caught up in their own world, that they seem so cranky or inpatient. But at the end of the day, do we ever stop and ask them how their day is? Do we ever start a conversation with them to see why they look unhappy, to see if there is anything that we could do to make their day even a little bit better? I think the answer is no. I would love to say I do...but the truth is, I am just as guilty. It's so easy to judge someone by their outward appearance, by not wanting to approach because they seem so grumpy, so busy, or in their own world. But at the end of the day, that's not what I want the kids to grow up doing. As much as we try to remind the kids that maybe their friend that yelled may have been feeling sad or scared inside. Or that, maybe that friend that was really reserved just needed someone to go up to them and start a conversation - I recognize it's not always easy.  Sometimes you don't want to share your story, sometimes you don't think people want to hear it. Often times you don't know how.

Everyone has a story - their story is just as important as your story. That's what I have told the kids for as long as they could understand. That's what I would tell Bryanna all the time.

I have a story to tell as well. But my story is not one that many people are prepared to hear. I know that while I may be smiling and laughing at times, there are many times that I may seem unapproachable or reserved. I may look serious or even sad. But that's my story. I have three kids. Three beautiful kids - 9 year old Bryanna (who would have been 10 in two weeks), 7 year old Evey and 4 year old Liam. As my story goes - I have one daughter that blessed my life with her contagious laugh, her beautiful smile, her candid honesty, her sassy attitude, her love for dance, her struggle with math, her blue eyes, her love for fashion, her unbeatable love for animals, her love for my black heels, her sweet nurturing side, and her love for our special ice cream dates in the middle of the night. I have another daughter who has blessed my life with her quirky smile, her contagious laugh, her giggles in her sleep, her love for inventing amazing functional things, her love for dancing, her new found love of fashionable clothes and matching socks, her love for go carts and archery, her love for cheetahs and leopard print clothes, her nurturing nature, her fixer attitude, her strength and her candid honesty. I have a son who loves to dance, who makes most people smile, who loves hugs, who loves pink, princess Elena, costume dresses, who loves to quietly listen and says the most wise and unexpected things, who loves zooming cars around and who really loves his sisters. 

I have three kids. One in heaven and two here with me. One in my heart and two in my arms. 

Yesterday was one of those days that my story took over my day. It was an impossible day. We have been working with our health insurance provider and the Health exchange to get Bryanna's date of death correctly noted so that we can get reimbursed for the months that she was on our policy but no longer alive. This has been taking place since January. We have sent her death certificate to each company, made a min of 8 calls back and forth and was required to physically take her death certificate to a physical location to show proof of death. We followed up time after time and was told the matter was resolved and to call back in a month or so to apply the credit as it is updated in the system. So, I called yesterday. It was then that I found out that nothing had changed. That they wanted me to go through the entire thing again. Keep in mind, this is not taking a birth certificate or marriage certificate in to show proof of a happy time in your life. No, this is constantly having to prove that my 9 year old daughter, that my first born child died on October 24, 2016.  She died in both Mike and my arms I might add. This just adds insult to injury. They have once again escalated the matter but this means that nothing is resolved, and yet again I have to wait for a call by a supervisor and discuss my daughters date of death to yet another person, to yet another stranger, to resolve a business matter. A cold business matter. 

That was so difficult. So, naturally afterwards I was a mess. I tried to focus on my work (which when upset like that makes it quite difficult to focus on translations). Just when I thought the pain of not being able to hold Bryanna was impossible to get through, I realized that Fireworks started playing on my Pandora station. Fireworks - Bryanna's favorite song. Fireworks - the song that got her through  her final really difficult days. After that Centuries from Fall out boy came on...the lyrics 

"Some legends are told
Some turn to dust or to gold
But you will remember me
Remember me, for centuries"

kept sticking with me. After that song, I composed myself and I started working. I had a pop station on the radio - a pop station that normally ONLY plays pop. As I was working and I was starting to feel more calm, I realized that pop music was not actually playing. Piano music was playing. Not just any piano music...but the specific songs that she loved that would play every night when I put the kids to bed. The specific songs that were on a very different station. I have never had a time where the stations switched like that. I have had this happen before. Early on, when I was playing music at the cemetery and asking for a sign...anything to know that Bryanna was with me...the song I was playing suddenly stopped... suddenly without anything being clicked or in queue, fireworks started playing. There as no explanation...it just was. I know this sounds crazy, but I'm not the only one to have these stories happen. Bryanna is with us. 

 Today, Liam and I had an unexpected lunch date. He wasn't feeling the best, so he was quite.  I told him how amazed I was that our plants were getting super tall because we planted them from bulbs. He says: "oh no, they are so big. What if they grow to the sky?!"I said, "well then bryanna would get to see them too". He responded "Bryanna already sees them".  Let me remind you that Liam is 4.  The power behind his words just blows me away. 

The day before our trip to honor Bryanna and to celebrate Evey and Liam, Evey and I stopped by the cemetery to sit with puppy angel. We were so surprised to see that her headstone had been installed that day. We sat in front of it saying how beautiful it was. As we sat there, my arms around Evey while she sat on my lap - Evey says "Bryanna is happy now". Let me remind you that she is 7. 

The questions at bed time in our home tend not to be about simple things like, will the weather allow us to be outside at camp tomorrow, or why do dogs sniff butts...you know the simple kid stuff. Rather, our questions are loaded and heavy and thought provoking. It's questions like - are there oceans in heaven? Does it hurt when you die? Did Bryanna want to be in heaven as much as she wanted to be here with us. Did Bryanna have a cold that led to her leukemia. Will I get it? 

This is our story. 

Before you judge a kid for having a melt down or not listening in public, before you judge a child for always being in their mom or dad's arms, even though they are old enough to run around on their own, before you judge a lady at the store for looking unapproachable, before you judge a man who seems inpatient, take a moment and ask what their story is. You never know, that kid may have lost a sister to a horrible cancer. That kid may be terrified of leaving their parent's side because they had to leave their sister's side and she died. That lady may be a mom who is trying to make sense of her daughter's death and is thinking what she could make for dinner that would make her kids smile and forget their pain even for just a moment. That man may be thinking about the last discussion he had with his daughter or may be thinking of how he had to rush to the hospital to be by her side as she passed away.

Everyone has a story - we can choose to have a bad day or choose to have a good day. What we do with our story is what defines us. How we get through the impossible days will give us strength to be present. It is with that presence that our story will keep growing. There is so much darkness in my story - but I believe that the sun will continue to shine bright and light our way. I believe that the days may be hard, but we can always find something good in it. We can always choose to do good. As I was reminded by a very wise man today, we need to remember to find three things we like every day. That's so important. Our story isn't all bad. We had 9 beautiful years with Bryanna. We have beautiful butterflies, animals and nature all around us. We are surrounded by people who love us. We are living each day feeling Bryanna's Love. We have each other. 

We have to live our story, but we also have to make it count. 

This is my story. 

Grape Scented Bubbles and Never Ending Hugs

We are a full week into Summer vacation and emotions have been running high. Like every family, we have so much going on in each and every day. We have camp, doctor appointments, counseling, work, and the time somewhere at the end of the day that we sit on the couch and at least one person falls asleep.  We need to find a way this summer to slow down. To let life happen without exhausting our energy all day every day. We need to breathe.

A week ago school ended. June 19th marked another first since Bryanna was diagnosed with cancer and subsequently passed away. The end of the school year came. I remember the first day of First grade for Evey and PEP for Liam. It was also the first day of fourth grade for Bryanna. It was a day she was dreading because she was certain she was not going to make any friends. It was a day that we never expected to look like it did.  The first day of school came about a month after our life was changed forever. It came a few weeks after I emailed Bryanna's team at school to let them know that she would likely miss the beginning of the school year. That she had been diagnosed with Leukemia and that we needed to get her into remission before she could go back. It was during that time that we were hoping that at the very least, she could attend in a month or so, but then decided collectively with her team of doctors that she would not attend school at all this year. We were all too concerned that it would be too dangerous for her. We were concerned that even if she reached remission, that she would be near kids and germs and contagious colds that could set her back. We were concerned that the stress of school would not help her heal (School was a very stressful hard place for Bryanna. It didn't come easy in so  many ways and she struggled every day). Moving forward, the first day of school for Evey (Liam started a day later) was a surreal day that we all tried to get through with a smile and with grace. Mike and I arranged to make it possible for me to stay home the night before school started and to take Evey to school. Mike stayed with Bryanna - We wanted to make sure that Bryanna felt special and loved as she laid in her hospital bed dealing with chemo, nausea
, excruciating pain and her hell we know as cancer. At the same time, we wanted Evey to feel special - like her day mattered, that first grade was a big deal and that we were present for her just as much as we were for Liam and just as much as we were for Bryanna. Making her feel special and being present wasn't hard. It was knowing that as I stand with Evey as she sits in line with her new classmates, as I talk with her teacher briefly, as I hug her and take our first selfie of the school year and swing her around and smile ear to ear, I knew that Bryanna was fighting for her life. That Bryanna didn't have a choice. Bryanna was not at this school, in the cafeteria with all the other kids lining up with their new teachers and classmates about to start a new school year and excited about being in the fourth grade. That was such a difficult balance. It was hard. It sucked. After leaving the school only after giving  Evey 100 hugs, and telling her that we will be there to pick her up, that she will have a great day, and we are with her in her heart the entire day...I got my ice coffee...pretty much the one drink I had all day while I stayed at the hospital. I then started on my hour long drive to the hospital crying most the way and rushed in to Bryanna's room as she was waiting for me anxiously. Mike had to leave shortly after I arrived so he could get to work, but once again we seamlessly made sure that all three kids mattered, that all kids felt loved and somehow, we did it together.

Flash forward a few months to last Friday. It was so sad to know that Bryanna would not be moving up to Fifth grade. She would not be excited for the last day of school...the day when we always treat the kids to ice cream or the dinner of their choice. It was a day that we celebrated a job well done for Evey and Liam. It's a day we realized that we made it through the year. But the void is still there. I am so proud that the kids made it through this year. It was brutal for them. It was painful. It was hard. It was emotional. There were times that I didn't think we would get through it. But we did. Next year is going to be hard too. Starting school will be another transition that Evey will likely struggle with. It will be another confusing change for Liam but we will do it.
It was sad to me that as we ended school, instead of holding Bryanna's hand out to the car as they liked to do, Evey was holding the donation box that we had in the office for Bryanna's Love...containing stuffed animals to give to kids like Bryanna, fighting for their life and missing out on the normal kids things. It made me so proud to see how much she wanted to help. How much she wants to be a part of Bryanna and her story.  From the outside, it may just look like a little girl carrying a big box, but to me it was a huge mile stone. It was Evey being okay with that box. It was Evey dealing with the fact that the box is the closest thing we had of Bryanna in that moment as we left the school on her last day of First grade.

All this comes a week after the Memorial that Children's National Medical Center's Grief and Remembrance program hosted for the families of children that passed away at the hospital over the past two years. It was beautiful and emotional all at the same time. We were dreading going, but we needed to do this. We thought we could get through it until we walked through the door and was greeted by a handful of her team from the hospital. They volunteered to work this year. They volunteered to be there knowing that Bryanna was going to be honored along with all the others beautiful kids. It was in that moment that I wasn't so sure that I could do it. It's one thing to be there with a large room full of strangers, and it's an entirely different thing to meet people that make all the difference for your family. It made all the difference to us that they were there. They knew us by name. They knew Bryanna by name. They made Evey and Liam feel special. They knew. They just knew. They made sure everyone was given a packet with a butterfly that we would let go when the name of your child was called. It was so beautiful. It was so magical...it would have made Bryanna so incredibly happy.  I was taking pictures of the kids during this during which I was so touched by the incredible bond that Evey and Liam have. They show such strength through this undeniably hard time. They show love and support, even though they don't always  understand it. They are sad-mad, happy, angry, hurt, scared and every other emotion that they can feel. But they both get it. They both understand each other, even when they don't put it all in words. Yes, they have their moments, but more often than not, they are right next to each other unknowingly getting the other through this struggle. I miss the pictures of the three of them together, but I'm grateful that they are so close that they want to be together. I did not plan any of these photos - they were completely candid, which make them that much more powerful to me. We had some really great ones with the kids and butterflies, which we like to think one might have been Bryanna...especially the one that kept staying near or on us. But out of respect for Evey and Liam's privacy, I can only show you a few.  I'm grateful that we are in a time where we can easily take pictures and videos. I need to keep taking advantage of that because those pictures and the few videos I have is what gets me through some of the toughest days of missing my baby girl.

The remembrance tree (I'm not sure if that was the exact name) - All the siblings wrote a message for their brother or sister. These were then put on by each child to a tree for the ceremony. After the ceremony, the remembrance team put them on a tree in front of the hospital for the wind and rain to bring each message back to the earth. Each message was voiced by Evey and Liam and Mike and I transcribed. 

Bryanna was one of way too many children's picture that was up in the front of the hall to be honored. Way too many children passed away. Way too many families were feeling our pain. Way too many people continued to suffer. 

One of my favorite pictures - This is the truth of our life right now. We miss Bryanna so much, try to be so close to her, even when we don't realize where we are sitting, what we are facing and what we are doing. 

Holding onto that butterfly and making sure it was safe really was the kids trying to hold on to a little bit of Bryanna. To touch her, to be there with her. To feel her. ..

This little butterfly kept landing on us. On my head, on Mike's hand, on Evey's dress, on Liam...and on Bryanna's picture. Over and over.  It makes me wonder....

Moving forward to this past week. The first week of camp. The camp that Bryanna loved so much, that was so wonderful to Evey and Liam over the year. It was a camp that did everything in their power to make Evey feel okay while Bryanna was first diagnosed and in the hospital during the summer. This is the same camp that helped put an amazing celebration to honor Bryanna after Bryanna's passed away. We love them. But it was the first time that the kids had to get back into the swing of camp...without Bryanna. It was hard. Evey struggled to go every day because she was only a stone's throw from where Bryanna's used to be. She struggled to be away from me, her safety. She struggled to be okay during assembly...the most energetic time during camp where they have skits, dancing and all around amazing fun. That's when Bryanna and Evey would sit together, dance together and sneak their last hug before embarking on their day with their group (Liam was at daycare on the same property...but this is the first year that he is old enough to be with the big kids). The second day of camp came with many challenges. They both had a dentist appointment and then Evey had an ophthalmology appointment where she learned she had to have an eye patch for an extended period every day for the entire summer. NOT a highlight of her summer for sure.  But getting her back to camp that next day was a flashback to how she struggled at school after Bryanna's passed. It was a lot of crying, running back to the parking lot (which scared me), having to have a strong team of people on the ready to help her get in the groove of camp and distract her just long enough for me to leave. It was trying. It was exhausting. It was heart breaking.  I was so tempted to take her home, to snuggle her and to let her have a movie day with me. But that doesn't help her face this, and that doesn't make any of it go away. Besides...they made sure to take her aside and let her do archery. one on one with the lead counselor..which made her week. During this week, Liam struggled to keep up with his group. His asthma continued to flare up and he progressively started to struggle. He started to not feel well even more than before, and it was a hard balance of letting him go to camp and making sure that he was healthy. On Thursday, I picked him up early because he had an asthma attack. Code orange air quality coupled with smoke from the camp fire put a big damper on his breathing. We got him home, gave him a nebulizer treatment and he slept and snuggled the rest of the day. And then he spiked a fever. For the past few months, Liam has been losing weight, falling, fatigued more than before, not much of an appetite, having leg pain, vomiting and having stomach pain. And now he spiked a fever. His team of doctors are doing their due diligence to find what the problem is. In the mean time, we try to keep him as active as possible and send him to camp. We are hoping that whatever is going on...we will finally figure it out, and he will have an easier time at camp. He talks about Bryanna so much more on the days that he goes to camp. It's pretty amazing to hear our kids who struggle to express these feelings, to talk about heaven and Bryanna so freely as we go to camp. I'm hoping that while they have fun, after they get over the anxiety of being there and they start enjoying their day...hopefully somewhere along the way the find a little nugget of peace.

After Liam talked about Bryanna being in heaven on the way to camp last week, Evey told me that she hates that word. That she thinks it should have been called something else. I agree...heaven doesn't sound the same to me. But then again, it's a place that my beautiful girl is when she should be here with me. It is a place that I can not go right now. It is a place where we can not hold Bryanna. Anything we name it would be tough to swallow. We wouldn't like it if we called it the park or Disney world either...because the little girl we love is there and not here with us.  But at the end of the day, we have to have faith. We have to know that heaven is a beautiful place of peace and happiness. It is a place that Bryanna no longer feels pain or suffering, that she is happy and that she is not alone, not scared and is okay. 

Hopefully the grape scented bubbles that greet the kids, along with the high fives, the personalized shout outs to each of the kids, the fun music, the great activities...and hopefully the making of friends...will allow the kids to put their guard down and to enjoy each activity, enjoy the moment and find a little bit of peace. 

That's what I want. I want the pain to subside just enough to find peace. I want to know that when the kids melt down it's because they are dealing with kid emotions and kid things...not grown up issues like the death of their sister. I want to make it all better, but I know that's not possible. I want to hold Bryanna. I want to talk to her again. I want to smell her. For now, I will settle with grape scented bubbles at camp. I make sure to continue to hold the kids every day. I want to let them let go of me first when I hug them so they know that the hug is there for as long and as often that they need it. 

I want wake up to three kids excited about their day...not just two. But these are the cards I am dealt. We will be okay. I will continue to breath and get through each day. Even the impossible ones.

Evey and Liam basking in the joy of catching grape scented bubbles, and about to high five more people than the average athlete does on their way to the field. It is a moment of happiness, a moment excitement before they think about Bryanna not being with them...dancing all the way in. Bryanna's love for camp was contagious...

The simplest acts leave the best memories.

It's been a while since I have post a new entry to my blog.  My hope starting this blog would be to update it often, to use it as an avenue to share my thoughts, my struggles, my memories, my laughter. A place to heal. It has helped. It truly has. But I realized it is also so very hard. Some days writing down my thoughts seem harder than the memories that I want to keep alive. There is a wall that I put up. A wall that needs to come down a little more often. It is a wall of survival. It is the barrier between me functioning and being present in life and for my kids, and burying my head in my pillows. Without this wall, I don't think I could be present. This wall has made it possible to just be. Be a mom. Be human. Just be. But I realize, that I have to let the door open a little.  The reality is that we are no longer numb. I am no longer numb. That wall went up pretty early on as the numbness started to subside.  It gives me focus on the days that I just can't, it gives me courage to take that next step when I don't think I can...but I have to take those steps and feel at the same time. I have to remember that feeling is healing. Feeling is being human. Feeling is being alive.

Bryanna wanted to go to Disney Wold. She wanted to meet Princess Elena and see the animals at Animal kingdom lodge. She dreamed of being with the animals and princess every day. We talked about it extensively. She responded to the story of Disney when she was in the CICU. But ultimately she never was able to get her wish trip. At the exact time that we were picking out where to lay her to rest at the cemetery...when we were choosing her plot, Make a Wish called to discuss her Wish Trip. Words can't describe the devastation, the loss, the timing.
We wanted to make that trip happen. We wanted to give an unforgettable experience to Evey and Liam to honor Bryanna and to celebrate them. To give them some down time and fun away from life. But such a trip came with a very hefty price tag. One that we could not afford any time soon. We are still paying off Bryanna's medical bills, plus payments for her headstone, and every day bills. It just wasn't going to happen any time soon.

Just when I was going to give up on the trip, something absolutely amazing happened. Casey Cares Foundation heard Bryanna's story. Bryanna yet again touched the hearts of people that she never met. Though they typically do not do such lengthy far away respite trip, they rallied their donors and they made it happen. An amazingly generous donor donated a beautiful room in a spectacular resort in orlando, Medeival times donated a dinner show, American Airlines donated round trip tickets, in addition to the gift cards, treats, pjs and gifts for the kids... Then, we were connected with another amazing organization called Growth from Grief. Without hesitation, they donated a day at Disney, Seaworld, the Bones Museum and Coco key.  This trip became a reality. It was so hard to think about how we were on the receiving end of such amazing generosity, and that we indeed qualify for it because we lost our princess warrior. It is through these organizations and donors that we found more moments of happiness, of relaxation, of pure joy in the kids that we never thought was possible again. Our pilot on our way to Orlando talked with me a few moments before boarding while getting his manifest for the flight, and then went out of his way to talk with Evey and Liam about their first upcoming flight and trip. He asked the name of Evey's buddy she was traveling with (Sid..who is Evey's trusty weighted turtle) and Liam's lovey. He then invited them to the cock pit to experience a moment of being a pilot. During his greetings through the intercom while we were getting ready to taxi on the runway, he welcomed Evey, Liam, Sid and Lovey on his plane. It is in these moments that magic is made. The cast members at Magic Kingdom went out of their way to make it special for the kids, for us. They did so many moments of kindness that meant so much. The team at the Marriott went out of the way to make a special basket of goodies for Mike and I, a ton of welcome balloons and a stuffed animal for both Evey and Liam. Every detail was beautiful. Every detail of this trip counted. Every detail from every person involved in making this happen made a difference.

We saw the kids drop their wall and have fun. We saw the kids splash in the pool and get excited about balloons and stuffed animals. We saw them be kids again. Until they remembered why we were there. While there were so many amazing moments and times, there were also tears and questions. Before going out to dinner one night, Evey and I sat in the kitchen of our hotel room and cried. I sat there holding Evey on the cold floor letting her pour her soul to me while Mike listened next to us and Liam tried to stay busy. I watched Liam look lost and sad as we go to bed or when he would be eating a desert, and say how much he missed Bryanna. This trip was so important. It was another opportunity for us to try to piece together our hearts and take another step forward through the pain. It was important for the kids to see that yes, they do indeed matter. But it was hard. While we enjoyed our time away, everyone was ready to come back. But being back was a stark reminder of our loss. Coming home didn't bring us Bryanna back. It brought us home to a void that we thought would be better. Sure, we know that this is life, that this is what happens after death, that nothing will bring Bryanna back. But sometimes, it just feels like she will be there waiting for us. She's not.

Liam asks about Bryanna. He asks about why we can't go visit her in heaven. He has to deal with a very adult concept at such a young age and try to grasp some level of understanding. That's hard. He had a doctor's appointment at Children's National yesterday. He was incredibly whiny and clingy the entire time. While we waited for Mike at one point, he told me he was sad that he couldn't see bryanna. That he knew this was the same hospital that she was in. On the way home, he asked if the cemetery we were passing was Bryanna's. It was not. These are the questions and the stress plaguing my four year old's mind. He got a little stuffed animal to keep during this visit and Mike got one for Evey to have as well. As they talked about their new pets, Evey asked where his appointment was. I told him it was at the hospital. She then so very gently told Liam that she didn't realize he was going to Bryanna's hospital. She asked how it was. He said if was ok. They both sounded so sad. This is our reality. Liam has another appointment there next week. It doesn't get easier.

Evey was so mad that she had to stop playing on the swing last night. So very mad...like screaming and yelling kind of mad. But in the end, it came out to be her only way to control her life in that moment. She really was really mad about Bryanna. She missed her so much that it hurt. She asked how I knew that Bryanna died and I told her how I laid next to Bryanna when she died. She screamed, she cried, she just wanted to be on that swing. Swinging was the one thing she could control. She could control how high she was, how much she would spin and when she would go or stop. It is so easy to think that she is just being a kid who is being demanding, unruly and defiant. But really, it is in that moment that she is trying to hold on to the little bit of life that makes sense. It is Evey's way of forgetting the pain, forgetting the void and trying to just be a kid. Losing that moment pushed her over the edge for the night. Dinner, bed time...it was all tears, it was all anger, it was all pain.

The day before we left on our trip, Evey and I stopped by the cemetery. Bryanna's headstone had been installed that day. The day before we were leaving on our trip to honor her and celebrate E and L. It was so beautiful yet so final. This Sunday, Children's National is honoring the children who have passed away at their facility by having a memorial service. Next week is the last day of first grade (liam will continue in pre-k for one more year), and would have been the last week of fourth grade for Bryanna.  We have to continue to have the strength to keep taking that next step. It is hard. It is painful and there are days like today where it almost feels impossible. But the sun is shining - butterflies and birds are fluttering around reminding us that there is so much life in the simple things. The kids are transitioning to another part of their year.  We have to take these little moments, these little steps and enjoy the moments of smiles, of winks, of kisses and hugs, of happiness. We need to feel the sunshine and breath in the warm air. We need to take note that through the low, we are blessed with amazing people around us that are there to pick us up.

Words cannot express our gratitude and appreciation for everyone who made this trip happen, for everyone who was there for us during Bryanna's treatment and afterwards through her passing. There are no words that could truly express how I feel most days and how much I recognize what everyone does for us. I have no words, just love.

We will get through the  moments. We will release the butterfly during the memorial and we will continue to love through the pain.

The simplest acts leave the best memories.

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Stitch Attack! Ohana Means Family. Family Means nobody gets left behind or forgotten!

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!