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.