Now that our major house projects were complete we were able to settle in and start filling up our schedule! I found an awesome group of homeschoolers that met at a park near our house weekly to let their kids run wild and free! If you know Em you know this is exactly what my banshee needs! We signed the kids up for flag football and that was a dream come true. We also found a church!!
We were able to attend The Cure Starts Now gala. It was a great night out with the kids celebrating the accomplishments and future of The Cure Starts Now foundation. The ballroom was decorated with banners of children who were fighting or who have fought the battle against brain cancer. My heart was bursting with all kinds of emotions as I saw my LJ’s face among some of the bravest kids on this earth. I was so proud of him and proud of our family as I know the strength it takes to be a family with a child hanging from these banners. I was also terrified as I know the percentage all these kids were given, including LJ. Most of the children had won their battle and were no longer with us on Earth. That thought is always scary and seeing them on banners makes it very, very real.
We made some awesome memories, hung out with really great friends, and got to meet families that we share a bond with that is indescribable.
Shortly after the gala, Kyle and Remy came to visit us for Easter! We had such a great time taking the kids to Boonshoft, the zoo, and an egg hunt at the Trussel’s. No matter what or how much time we go without seeing each other, Kyle (and now Remy) just effortlessly fit into our family so perfectly. And after Remy gets adjusted to our loudnesss, he thinks we are okay too!
We enjoyed Easter dinner with Jake and Heidi and their family! Easter is always a really meaningful time of year for me. It’s a reminder that we have a hope that is not of this world. Hope in something unseen. Hope in a future. After living without hope for the first month or so of this diagnosis, hope is a very powerful word in my heart and my mind.
LJ finished cycle 11 of the clinical trial and had a very full day that day, April 24th. He ran, jumped, and walked through a creek. He played outside with friends for about 6 hours. He had fun on a swing for the first time , swinging on his belly and pretending to run at cheetah speed. We came home and he went to bed lateish, then woke up before we went to bed and went to bed with us. I had a dream he drowned. I was at a party putting my chair in the car and came back and couldn’t find him and found him in the bottom of a pool. He looked like he was sleeping sweetly only he was under the water and laying at the bottom of the pool.
He was dead.
The only words out of my mouth as I slowly walked towards the pool were “You’ve got to be kidding me?” All we’ve been going through and you are going to DROWN!! I jumped in and brought him out of the water. Then I woke up. Heart pounding, chest aching, and ears straining to hear him breathing. I thought to myself “it’s just a dream Christina, you’ve dreamed Emmaleigh died before everyone is okay” but my heart was just broken thinking about maybe this is what he would look like one day. That I would have to scoop up a lifeless LJ and give him to someone to take away forever. It’s terrifying. It’s a reality that I will live with until we see what God’s will is for LJ’s life and testimony. I am so grateful for LJ’s abilities and how normal our life appears to be but these fears and anxieties run rampant in my thoughts throughout my day, all day, everyday. I am human, yes I serve the Prince of Peace but I don’t always feel peaceful.
The moments of peace are definitely more frequent now but then they weren’t so much.
We ended the month of April with a Mercy Me concert. Emmaleigh and I got to enjoy a rare night out just the two of us! It was her first concert and she was so surprised that Micah Tyler was opening for Mercy Me and Crowder! Some of her favorite songs are sung by Micah Tyler and she was even more encouraged to learn that his little brother was also a cancer warrior! She slept through the end of the concert. It was adorable.
While she was asleep they performed “Even If,” a song that I have just started to be able to listen to without sobbing. It is powerful song that reminds me where my hope is found. My greatest prayer is that whatever our future as a family hold we will always find our hope and peace in Jesus Christ and his promises.
“They say it only takes a little faith“Even If” MercyMe
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone”