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.