Ever since Jackson was diagnosed, we’ve been in and out of church. You can’t take a child who is immunosuppressed to places they can catch the latest “bug” going around. Then Abby came really early, and it was hard to feel comfortable putting either of them in church nursery. I was petrified of her catching RSV. I was afraid of him losing his hearing aids. I was afraid of having other people care for them when it’d been so hard to just keep them both alive.
With two kids who have delicate immune systems — public outings, like church, was one of those things we had to sacrifice in order to keep them well.
Even though we haven’t been to church much over cold and flu season, it doesn’t mean our hearts have changed. We instill the very same values. We pray before meals. We say our prayers at night. We talk about God’s love for us all the time. About six months ago, Jackson prayed for Jesus to come live in his heart. He wasn’t in church when it happened, he was sitting on his bed, covered in his airplane blanket and holding hands with his Momma.
On the way to work, half the time I turn up the radio and sing. The other mornings, I watch the sun and clouds and have conversations with God. I share my worries, dreams and questions about what’s going on in my life. I feel just as close to Him in those moments as I do sitting in a pew at church. God is in the quiet for me.
When the kids were sick, I relied very heavily on those conversations. I may have been stone cold and strong on the outside, but inside I was in constant communication with God. I remember when Abby was coming off the vent and they were prepping everything. I ran to the pump room and hit my knees. All I did was say please, over and over and over. Please, God. Please please please please.
Jackson went through a very difficult phase taking his medicine after coming home from stem cell transplant. The doctor was threatening an NG tube if we couldn’t get it together. I tried everything and nothing worked. Each time the medicine was due, we’d fight for 20 minutes until it had spilled and he was crying and I was sweating and swearing. I remember driving down Mercury Blvd. on the way home one day and Jackson’s medicine was due. He was fussing in the backseat and I was so, so weary. We had been through so much, with so much left to go. In that moment, I praying aloud angrily to God. “Enough. I can’t do anymore, that’s ENOUGH.”
We got home. Jackson took his medicine without a fight.
I don’t pretend that I’m the only one with a relationship with God. I’ve met many, many families and we’ve spoken about how our faith has gotten us through terrible situations. I know parents who prayed with everything they had and still, they lost their children. I don’t pretend to understand why things happen. It makes me angry and sad. Why can two kids get the same exact cancer treatment and one lives, the other doesn’t? Why did Abby have a grade 4 brain bleed and she’s doing so well? Why did another child just like her end up nonverbal and in a wheelchair?
I am grateful, please don’t get me wrong, but I don’t understand.
But this I know: You may not know what the future looks like and the process may feel like Hell, but He’s with you anyway. God will meet you wherever you are, in the front row at church, in the car driving to work, taking a tough spelling test (Go Jackson!) and at your child’s bedside.
P.S. There are several little people I know who really need your prayers today. Keep them with you today, friends.