Family Explosion, The Good Kind

I was recently challenged by a friend to lean into what helped me live through my darkest days. The thirteen months walking with my family through DIPG were some of the darkest days. How was I the person I needed to be for myself and for those I loved? To highlight one of those things, I wrote the following post when my whole family visited the weekend after Josiah’s stay in the hospital. My townhouse was filled to the brim.

April 25, 2015

Wonderful Chaos

This has been a weekend full of family. Total, wonderful chaos. Sleeping bodies everywhere at night and lots of noise, and voices, and running feet during the day. It's been good for the kids, all of them, to have time with their cousins.

Josiah continues to struggle with double vision. He is unsteady on his feet. It annoys him that he cannot ride the skateboard. Sometimes, he just can't keep standing so he'll just sit down while the others run wild. Watching him can be heart-rending. But he is not complaining. His patience with himself is heaven-sent.

Don't get me wrong, he is still himself. Last night when we were all getting ready for bed he decided to put his PJ pants on his head instead of his legs. He acted like it was his hair. My boy went to sleep like that... he amazes me.

It's been a blessing to have so many people reaching out in prayer and other more physical ways. We are so blessed by the support and care that we have and continue to receive. Thank you.

the right thing to do

This visit was difficult for me. I was filled to overflowing with so many emotions. Was having my entire family fill my home in the midst of this tragedy the right thing to do? Should we have gotten space to think and let everything settle in our hearts and minds? Was this the best thing for Josiah and my children.

I really cannot answer those questions. I did go back and forth in my mind during their stay. I do believe it was best for my kids. They were able to get some attention, affection, and fun in the midst of the stress and unknown. Josiah sleeping with his pajama bottoms on his head seals this as fact for me.

It was good for my extended family as well. It drove the facts of this unbelievable diagnosis home to them all. The strong, confident, athletic, young boy was in fact weak, nervous, and a bit clumsy.

Poster Boards of truth

I knew I had to focus on the word of God. We all needed to lean on what was true, especially when it did not feel as true as before DIPG. The Psalmist tells us that the word of God is a “lamp” and a “light” to illuminate the path in the darkness (Psalm 119:105). We needed and still need the truth of God to light our way.

I could not focus on studying the Bible as I normally did. I had to lean on what I knew when the light was brighter than the darkness I walked. So this day (that I did mentioned in the medical blog) we had the children draw and write encouraging scripture verses on individual poster boards. The verses were to inspire and encourage Josiah. But they also were engaging the children with the word of God. They were considering how God cares and speaks into the scariest of times.

I placed a new poster board at the beginning of each week in the kitchen as Josiah went through chemotherapy. My children saw the truth of God in the middle of the pouring rain. God is our only hope. Getting our eyes off the circumstances and onto His truth helped get us through the storms. They did not answer all our hearts questions or remedy the situation. But those personalized scriptures helped to place our feet on the Rock and not the shifting sands of the changing shoreline.