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...