The Strength to Love: Magic and the assurance that she still matters

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.