Psalm 34:8, NLT
Last week Liam had the worst cold that he has had this winter. Although we haven’t needed supplemental oxygen or hospitalization for his colds for the past 6 winters, illnesses for Liam stop our entire family life. When he is unwell, our every effort revolves around his care. Last week my husband and I took turns all night on the couch with Liam sleep-sitting on our laps so that he could breathe and sleep. Parents of typically developing kids complain about this with a toddler and doing it with a tall 9-year-old is even more difficult! (I can't help but wonder how we will do this when he is 16!)
I realized the extreme difference between an illness for Liam and one for the girls when I was on the phone with our nurse. We were talking about his oxygen saturations and heart rate and trying to parse out what symptoms are allergy related and which are cold related. She asked if the rest of us have a cold and what our symptoms are. I was stumped. I had no idea if the girls had colds or not. When I asked them, I found that they did have colds, but since they are generally healthy kids, they just blew their noses a bit and went on with life. As their mom, I didn’t even know that my 12 and 5-year-old had the same cold as Liam! Even when my girls have illnesses that knock them flat, it is typically a few days in bed with lots of TV and fluids. Mothering them through sickness is a completely different thing than the overwhelming feeling of even minor illness for Liam. The combinations of low muscle tone, poor swallow timing, protective airway behaviors, and being non-verbal make every illness so difficult.
Sometimes I find myself missing the days when Liam was hospitalized for every cold. I don’t miss the home oxygen or the deep suctioning or the fear that he wouldn’t make it through each cold. What I miss is that our friends and relatives recognized how hard it was for our family. Knowing that we were in the hospital, they recognized the emergent nature of the illness and all of the management that went into being at the hospital and keeping our home running. I guess a part of me liked that others recognized our stressful situation. After winter upon winter of Liam managing without hospitalizations, it feels like no realizes how quickly he can become very ill and how intensely difficult his care can become.
The reality is that the recognition and empathy of others aren't as important as I sometimes let myself think they are. God knows the hard work that we do each day. He sees our loving care for our children, our exhaustion, and our isolation. He knows the things that overwhelm us. He cried with Mary when her brother Lazarus was dead and he is with us when we are up to our eyeballs in caring for our loved ones. Psalm 34:8 says, “You keep track of all my sorrows. You have collected my tears in your bottle. You have recorded each one in your book.” So as I am feeling like there is no one who understands, there is. Our God whose own beloved son died for sinners understand. He cares. He knows my every sorrow. He cares so much that he has collected my every tear in his bottle. He has recorded my sorrows in his book. I am not alone in this hard job of parenting. You aren’t either. May we rest in the God who values us so much that he collects our tears in his bottle.