May was here! It was celiac awareness month, brain cancer awareness month, a month with DIPG awareness day, and our little superhero’s 5th birthday. I really think May will always be a weird month for us from now on. A month where we get to celebrate our son but also a month where we are reminded daily that he has brain cancer. It’s not that we ever forget about it, just sometimes we allow ourselves to put it in the back of our minds, May…it’s right there in the front.
We started the month focusing on our homeschool before the real crazy began and Emmaleigh finished her language arts like a boss!
The second week of the month things got a little hard. Emmaleigh was struggling with feeling unloved. She was showing typical sibling jealousy behavior but it was all exaggerated because she is a super sibling. That job is hard. Her entire world changed because her brother was diagnosed with cancer. She had to leave friends after just getting to know people in Alaska. She had to be left with Nana while we took LJ to his radiation appointments. Her mom and brother flew back and forth from Alaska to Ohio monthly. Now she sits at appointments for hours with us. These are just a FEW of the changes she has so gracefully adjusted to. Through all of this she has been really cheerful and compliant, but sometimes the effects of our life challenges show through her behavior. If you have a super sibling or a child with a sibling, here are somethings I did to get her out of her funk.
- Mimi’s project. Her Mimi gave her a project to do. She was going to create a little science report and share it with Mimi’s class. It was nice for Em to have something she could focus on, something that only she was doing and something to be proud of!
- Holding her. Emmaleigh responds well to physical touch. I would be very intentional about touching her. When she was sitting near me I would hold her hands. I would brush her hair every day. I always made sure she was the first to let go when giving her hugs.
- I asked for help. This was the most beneficial. It really does take a village and boy did mine step up. There were surprises in the mail just for her, telling her how loved and special she was! Most messaged her or facetimed her and made themselves available whenever she needed anyone.
- She got to play with a friend. That quarantine really messed with our social butterfly of a girl! Almost daily play time with a neighborhood friend really made a HUGE difference!
Emmaleigh is only 8 and is dealing with all of this beautifully and the best she can! But it is still a lot, so when she is acting out we try to take a step back and evaluate how we are doing loving her well and try to identify anything else that could be going on. After getting her to open up and talk to me, I quickly realized it was much more than the normal intenseness of our life. It was her buddy Addison. These girls have grown pretty close over the last few months and Addison had just received scan results of tumors in her spine. Emmaleigh was trying to navigate Addison’s scan results and her start of re radiation on her own. She wasn’t using me as a sound board to help sort through the yuck that comes with DIPG. Teaching her to be as communicative as possible with us and being more intentional about the way we love her has helped tremendously and Emmy bounced right back!
Joshua finished remodeling the camper and it was everything I could have ever dreamed of. He is so good at making my ideas and wishes come true. Right after that was finished we moved on to the yard. My word landscapers are some tough folks because that heavy duty stuff isn’t a joke! We basically rearranged all the flower beds and got rid of some big ones and are planting grass in those spots. Joshua also dug a hole for a fire pit and did such a great job making that look amazing. I adore our yard now and it is much more “us”!
We spent the fourth of May like every other Disney-loving, Star Wars fans family…watching The Rise of Skywalker. I made some Star Wars themed snacks and we all cuddled up to watch the movie. I watched my first Star Wars movie…and didn’t hate it!
Next we celebrated mother’s day! The kids woke me up with an adorable breakfast, Em had planned a whole schedule for the day, and as weird as it was not going to church there was something to be said about the simplicity of that slow morning. It was a Mother’s Day for the books!
Kyle and Remy visited us next and surprised us by coming a few days earlier than planned! As Emmy probably felt with spending time with her friend, it felt so great and normal to have one of our best friends in our home! Due to COVID-19 and the stay at home order in Ohio there wasn’t much to do but that was okay and we had a blast at home with the kids. It was especially sweet to watch Remy and LJ’s friendship blossom!
On May 19th, 2020 LJ turned FIVE.
He was diagnosed with DIPG at 2 years and 9 months. That means he had been living with this monster for 827 days! That is 462 more days than we were told to expect at diagnosis. He would now have more birthdays with cancer than without. When he was diagnosed, I remember giving him high fives and it hurting so bad every single time thinking about how he would never be a whole hand old. And here he was…our little miracle baby boy was five. Healthy, happy, and thriving and FIVE! God has been so so gracious to us.
We started the day with gifts on the fireplace! Poor Remy thought that Santa had come and didn’t understand that those gifts weren’t for him too. LJ’s favorite gift of the morning was definitely his Spiderman silly string! We made number 5 pancakes and sang him happy birthday! He wore his cool Pokémon 5 year old t shirt and played with Moriah, Remy, and Emmy most of the day! He requested burgers for his birthday, so mommy went to Pinterest and found a Pikachu themed idea. We sang him happy birthday again as he blew out his candles on his cupcake. I was a miraculous day!
On Thursday we were lucky enough to have Kyle in town to watch Em so Joshua could attend the clinic appointment with LJ and me. We really miss having our whole family at appointments and are looking forward to the day we can again. LJ had a wrist x-ray to check his age to make sure that his daily Chemo isn’t stunting his growth. He measured 4 years and 7 months! Our little dude was growing wonderfully. The rest of clinic consisted of a blood draw, EKG, and an extra-long wait on his trail meds… but LJ started cycle 26 of the trial and for that we are so grateful!
The next morning…well kinda sorta morning once we got the three kiddos together and ready to leave, we took the kids on a little nature walk. It really wasn’t that little either, lol! We couldn’t park inside the park itself because it had rained so much there was flooding. So we had to park at the entrance. After we made the long walk down to the path we picked a trail and headed up. It was much longer that we thought and made much much longer by three kiddos that like to “stop and smell the roses.” But it was still so much fun, snakes and all, a memory I will cherish forever. My newly 5 year old being a normal little boy on a two mile walk/hike!
Mimi and Papaw came just in time to join us for LJ’s birthday party! Our little dude had an awesome Pikachu party complete with an inflatable waterslide, a Pikachu cake, and great friends. His Dragonfly family contacted a videographer and our friend to document his special day! Not only was our miracle turning five but he was able to do everything a normal five-year-old could do. The kids played on the waterslide even though it was freezing! We sang happy birthday and I only light four candles on the cake because I’m me and forgot. Lol! LJ didn’t notice. LJ and Remy finished the cake without their hands.
We had a pull piñata and I’m pretty sure the kids were disappointed they couldn’t hit it! We finished the party with unwrapping presents! It is so fun watching LJ unwrap gifts! Most of the guests left but the Varns stayed and we enjoyed spending the evening with them. The kids even got to download Minecraft and I think that was the highlight for them for party day.
The whole party day left me with an overwhelming sense of gratitude. There is nothing good about DIPG but celebrating a warrior and enjoying a day surrounded by friends is so good.
A reminder that God is always good.
The day after his party we got to spend some quality time with Mimi and Papaw while the kids played in the waterslide. After lunch and some yummy ice cream we said our goodbyes and had an empty home.
We wanted to show Daddy the waterfall and trail we had hiked with Kyle and Remy, so we did that!
We were putting away laundry that evening. Putting the size five clothes into dresser that Torie had lovingly handed down to us. In the closet I found a pair of 5t Superman swim shorts that I had bought on super sale when LJ was probably less than a year old. A pair of shorts that shattered my heart when I came across them in Anchorage after diagnosis. I just knew LJ would never wear them, and here we were putting these shorts away for our little boy to wear.
Our next adventure was to Charleston Falls! We had such a good time hanging out with friends we hadn’t seen since February. It was so cute seeing the kiddos together again and I’m not going to lie I really enjoyed seeing my friends too! The kids even found a deep part of the creek and took turns jumping in!
We finally got LJ the fish he had been talking about for months with his birthday money! He named it Super Sonic and was really sad he couldn’t hold it. We did let LJ pet it when we put it in its tank though!
LJ built his first really cool plane out of Legos. Building Legos are something that Em and LJ can do civilly and I love seeing what they create!
We ended May with the maiden voyage of our camper! We went to Houeston Woods and planned on having a quiet weekend with just the four of us. Our kids had other plans! They made friends with so many kids in that campground and basically spent the whole weekend away from us playing! We did get them away from their buddies to go on a little family hike where we found a gorgeous waterfall and took some great pcitures.
While camping and playing with friends, LJ had gained a lot of confidence on his bike! He was riding independently and kind of keeping up with the other kids. Well he followed the other kids and took on a hill that was too much for him. He clotheslined himself on a picnic table right in the chest but somehow avoided the concreate block and his face. He didn’t even cry but he for sure wasn’t getting back on his bike that weekend.
The next morning, we loaded up and had smores for breakfast before pulling out!
May was a very full month. We cautiously creeped out of quarantine and into our regularly busy lives. Another beautiful month full of so many amazing memories. I am so grateful for another beautiful May as #BarnesPartyofFour