I was recently introduced to JJ Heller's Painted Red album, which led me to quickly snatch up When I'm With You, released earlier this month. The title track is a love song, but not the kind I'm used to. I immediately thought, as I listened to it, "This is how I feel about my kids." And indeed, it is a love song from JJ and her husband to their daughter, Lucy. JJ sings about how when she sees her baby smile, her heart aches, "so full it is about to break"; meanwhile, when she sees her baby cry, "it resonates... in a place I didn't know was there." My favorite lyric is the bridge:
Beautiful baby, you're sweeter than strawberry pie
Just like the morning, your smile brings the sunshine.
My baby boy's smile has meant more to me over the past few weeks than ever. About seven weeks ago, he began to have seizures. It took three weeks, four different types of medication, one hospital stay, four or five trips to the E.R., and several to the neurologist to get them under control. Once the seizures stopped and a certain drug wore off, his personality started to come through again, and it warmed our hearts.
We still don't know the cause of his seizures. We know a few more things about his brain now, but they don't really explain what started the trouble. There are more specialists to see and tests to run both where we live and out of town, if necessary. There are still neurological issues to address even though the seizures have stopped; some funny behaviors that weren't there before the seizures. Providing updates on Stefan's condition has proven a challenge. In the midst of his neurological difficulties Stefan has also experienced a great deal of teething pain, a huge growth spurt, and a case of pertussis. Such things make it difficult to put my finger on what he's going through. There have been a lot of night wakings, meaning I'm not sleeping much, and my energy has gone into other things. I got a good night's rest last night and it makes a big difference. I have appreciated all of the inquiries, well-wishes, and prayers. When you love someone so much and are concerned for them, it makes a big impact when other people care, too.
I especially have been touched by my Trinity Baptist Church family. They came to the ER when the crisis first set in, visited us in the hospital, organized and brought meals, all without us asking. The first 24 hours that Stefan was in the hospital, my husband was out of town. Magically, the church organized childcare for my toddler when I had to be away and couldn't really organize it myself. This is a church that not only strives to be faithful in doctrine, but has shown love in practical, tangible ways to our family. We are so blessed to be part of it. I very much think that any sort of present peace we exhibit in this situation comes from the sense of having a "safety net" - that the Lord will not simply let us fall. This sense has derived, in part, from the very focused acts of kindness and selflessness of our church friends. I would especially like to mention Ryan and Kara Polk here, who seemed from the beginning to take our situation to heart, even though it really is not their burden to bear, and they have many of their own.
We don't know what the long-term results will be yet and I'm not sure if/when we will. We were living minute-to-minute a few weeks ago; now we are living day-to-day. I want what is best for Stefan - for him to realize all of his God-given potential, and live life to the fullest. I love him. That is the song my heart is singing right now.
Every day the sky is a deeper shade of blue,
When I'm with you.
