6 Things I Wish My Family Knew About Eczema
My family lives all over the US (and in Canada). When our lives were turned upside down by an infant with severe eczema, they were not there to see our daily struggles.
They didn’t get how disruptive it was to have a baby that you couldn’t comfort, that couldn’t sleep and who scratched his skin raw. They didn’t get how helpless we felt trying to find a treatment that might work. Because they only visited (at most) a few times a year, they didn’t understand how challenging our lives were.
If I had the energy, and the ability to organize my sleepless brain, here is what I wish I could have told them in those early years.
Don’t expect us to do what your friends’ families are doing.
We don’t have the bandwidth or the predictability of other families. My mom once asked if we could arrange a facetime call every Sunday evening. Our baby’s eczema situation for the day ruled our lives. If he (and we) were exhausted from a flareup, we couldn’t commit to any regular activity.
Look for small practical ways to help.
When you visited and offered to babysit so we could go out for dinner it meant a lot. No babysitter outside the family could take on our distressed child and we really needed that break. When my mom found scratch sleeves (arm-length wrap-around cotton mittens) and sent us several, it helped our child keep from scratching his skin raw at nursery school and during the night. When my father-in-law did greatly needed repairs around the house it made our living situation far easier.
Understand that eczema is a condition with unpredictable flareups that can be managed but not cured.
Some kids outgrow it. But many, many kids with moderate to severe eczema do not. Just because your friend’s granddaughter’s eczema went away by stopping dairy, doesn’t mean our son’s will. Celebrate with us when there is a period of “remission,” but don’t expect a cure. Understand that we can’t try everything you may suggest.
Cut us all some slack.
We have a child who is uncomfortable most of the time. He can’t be left alone for 5 minutes, or he will do damage to his skin. Now is not the time to offer unsolicited parenting advice, even though we know its well-intentioned. We can’t let him cry himself to sleep when he is experiencing intense discomfort. We know our parenting isn’t perfect right now but we’re doing the best we can.
Remember our child is more than his condition.
Sometimes, when his eczema flare is bad, it’s easy to forget he is a preschooler that wants to have fun. Please engage him, play with him, read to him. It will distract him from his discomfort and bring you both joy.
We really do appreciate how much you care about us and are trying to help.
We may not have the energy to tell you all the time. Look past our exhaustion and irritability. We love you and know you care about us.
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