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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