The summer kept chugging along and we were really enjoying our time at a weekly meetup with other homeschoolers called Wild + Free. While there a woman asked me what was LJ’s prognosis (not randomly but I was telling her about why we moved to Ohio) and the best way I could explain it then was every breath LJ takes is a miracle. But isn’t that true for every child? We are all given these little nuggets of joy and headaches to love and enjoy, but they aren’t ours. Joshua and I feel like our children are given to us for a time to raise up madly in love with Jesus and send out into the world to make more people fall in love with Jesus.
July marked 17 months post diagnosis with DIPG. After hearing what his prognosis was in February 2018, I never thought I would get the opportunity to spend another summer with LJ. It really changes things when you are hot and sweaty at the waterpark and your little miracle boy wants to go down the waterslide just one more time. You just stand there in awe as he goes up the slippery steps and down the slide. 17 months ago he was using a walker to help steady every step he took.
I am more patient. Our family as a whole has slowed down. I am way less scheduled and try to be more spontaneous, letting our days just flow with a rhythm but not a schedule. I am still human and I still have to parent a 4 year old little boy who is VERY impatient and spoiled! Not his fault though! lol!
Joshua went on his first TDY since LJ was diagnosed. A TDY is pretty much just a work trip. He went to New Mexico for 5 nights. We haven’t spent much time apart since February 2018. Sure we’ve had a few weeks in Cincy with just LJ and I, the kids and I flew to Ohio while Joshua drove from Canada, Em’s and I went to SC for a weekend, the boys went to Orlando for a few nights, but this was the first of Daddy leaving for work. It felt really normal for me to have Joshua out of town and have the kids 24/7. and it felt good to feel normal. When Joshua joined the military we knew what he was signing up for and when he isn’t traveling for work it feels as if he isn’t doing his full job. I could even say I feel lucky to be able to experience the excitement and butterflies of picking up Joshua when he does come home! We picked him up and were super excited to be whole again!
While Joshua was gone, LJ had a clinic appointment. The monthly one that takes 3+ hours to wait for the pharmacy to fill the clinical trail meds. 3+ hours alone in a small hospital room with my wild banshees! But 3+ hours I will gladly wait with my kids bouncing off the walls if it means we can continue to fight this monster, DIPG.
A little over a week after Joshua came home, he left again. This time to Japan, but again for less than a week! We were testing the waters of being separated again and decided it’s just too soon and too much to voluntarily go anywhere for work. We operate better together and every moment as a family unit is so special and important to us. We will do our best to protect our time together and of course we are super grateful the Air Force is being so gracious to us!
While Joshua was in Japan the kids and I were able to take a very special trip to Michigan! Ems had no idea but we were going to visit the Berrios’! Our very good friends from Homestead! She thought that I had rented us a house on the lake for the weekend while Daddy was away. When we got to the end of the street and saw Deanna she was SO excited! First thing she said was “Is Jaden with her?!” It was precious! We pulled up to the house and was greeted by Deanna’s wonderful and gigantic family. Prayer warriors that have fiercely prayed for our family and loved us through this journey. It was so nice to be able to give these lovely people hugs!
We ended July by the lake with our greatest friends (minus Joshua)! We baked cakes for like 12 kids birthdays, jumped on trampolines, LJ loved the water, and fishing. Carmen and LJ belly laughed while Eddie pretended to be hurt every time they “hit” him with the swing. Em went tubing and rode a jet ski for the first time, without me even knowing she was going on the ski, the kid is fearless. It was such a blessing of a weekend…despite LJ’s super weird blisters that he got after he was bit by bugs!