There really is no easy way of explaining how I felt the weeks leading up to LJ’s two year post diagnosis mark. Sometimes I can only relate our life to being stuck on a rollercoaster that is making you sick but you never want the ride to stop.
We were coming off a “bad scan” so there was the open wounds from that mixed with an overwhelming sensation of joy and gratitude for 2 glorious years with our son. LJ was showing symptoms…I’ve noticed I see them after scans now. I’m not sure if it’s because of anesthesia or what but this time of course I could only relate it to the 13% in growth the radiologist saw. His eyes were worse than normal, his legs hurt, and worst of all his party boy sleep habits were back.
The week before his 2 years, he was up every night almost right after we put him to bed and multiple times during the night ready to party, these were some of his first symptoms that cut like a knife every time I hear that sweet pitter patter run down the hallway. What should be sweet extra cuddles from my last baby has turned into a reminder that monster in his head affects his sleep habits and it’s probably the tumor.
On February 12th, the day before his two year mark, we put the kids to sleep and went to bed early ourselves. LJ was up shortly after we went to bed. Wide awake and just ready to hang out with us. We put him to bed with us and I cried myself to sleep while praying that this was not tumor related. When I finally got to sleep, our dog Dolce started wheezing/coughing/sneezing. He’s been recently diagnosed with a heart murmur and ultimately congestive heart faliure so every day we have with our old boy is a blessing. This night was pretty scary for me. He was having a hard time calming down and breathing. I was was trying to figure how we’d reschedule LJ’s celebrations because our dog died. I prayed that we could keep our dog and that he wouldn’t die on February 13th despite that day already sucking in our world I didn’t want to add that. Dolce finally calmed down and we all were able to go back to sleep. It was a long night.
February 13th, 2020 was here. A day I thought I’d dread. A day I would walk around angry that a disease I had never heard of until 2 years ago took my son from me. But I was waking up to LJ’s “I love yous” and all da besos! He was here, he was happy, and oh so healthy. It was time to soak in this beautiful day and celebrate our son’s life!
I should also mention our sweet Emmy girl. Days before his 2 years, I prepped her for what that day would look like. That it would be kind of like a birthday party for LJ but she (and all of us) were just as important. If it weren’t for her we wouldn’t have survived these two years. With tears in her eyes she just said thank you. She is constantly reminding us of the hope we have in God and eternal life through Jesus. She was put on this Earth to disciple her own Mama’s heart. She has lifted my spirits so many times in her short life. Emmaleigh is a warrior and DIPG is just part of her powerful testimony.
I mention her because that girl woke up in full celebrate Bubby mode!!! She was so excited to get him ready to go and for a day of partying!! LJ’s amazing Aunt Kyle made him a shirt to celebrate these two years God had given us with him.
Those words in scripture are used before God moves in a mighty way. Words used before miracles are performed, promised are kept, and people healed. LJ’s diagnosing Doctor said we had 9-12 months with him, but God said I am in control. God said for us to be still and wait. God said LJ’s work on this Earth isn’t finished. We have now had a full year longer with LJ then what DIPG statistics were going to give us, and two years of a healthy, seemingly normal little boy. I am so grateful for all the but God’s in the last two years.
We began LJ’s special day with a routine blood draw at the Liberty campus. We were blown away with the party the child life team had prepared for our boy!! Superhero decor and an amazing gluten freeSuperman cake that was delicious! They had gifts for BOTH of our children! Most of all we had the best nurse taking awesome pictures of our family enjoying the little party together!
After we partied we did a quick in and out blood draw and we were on our way!
We were off to celebrate LJ in a huge way! The kids were so surprised when we pulled up to Main Event. It’s kind of like a Dave and Busters but with bowling, laser tag, and an obstacle course! The Dragonfly Foundation and Main Event were treating us to a fun-filled afternoon! The first surprise was LJ’s very best friend Rosie Red!! She came to visit with LJ and he had her playing all kinds of arcade games. She got on motorcycles and even squeezed into some games with LJ. He pretty much didn’t leave her until she had to leave.
Before she left, the Trussel family arrived to the party and we got some cute pics of the Disney pose-with-characters professional kids.
Em and LJ were so happy to have some of their friends to play with at Main Event!
Emmaleigh braved the obstacle course and part of the crew played laser tag!
We ended the party with tons of food and bowling! Who knew our little boy would love bowling so much!?
Overall, February 13th, 2020 was a wonderful day. It was better than 2019 and any day is better than February 13th, 2018. I pray daily for many more years with LJ. For many more celebrations of life on February 13th. I have no control of the future, but what I do have is a God who does. A God who loves us, cares for us, and wants good for us. Despite what our future holds I know these truths will never change.
Thank you to everyone who has prayed for us, supported us, and loved us over these last two years. This journey would have looked drastically different without this team behind us every step of the way. We love y’all.