Everywhere we turned, people wanted to know; ‘what had we done to our baby?’, ‘why couldn’t we fix it?’, ‘why wouldn’t we try the 101st cream handed to us?’ A manager publically accosted us in a supermarket, exclaiming loudly, drawing attention on my baby, personifying the shame we should be feeling, again we went home and cried.
We were desperate for help, desperate for solutions. Throughout the rollercoaster madness of flare-ups and infection we saw countless GPs, nurses, paediatricians, all of them desperate to help. One nurse, in awe of my little girl, called us off-duty to tell us about the latest cream that could be our cure. So broke from constant arrangements to make GP appointments, out of hours and hospital trips, we couldn’t afford it anyway. The costs mounted up; when the car broke we had no money to fix it, so we gave it up. Eczema was costing us everything; finances, emotions, relationships, friends, it nearly lost my partner his job too.
We were living in a bubble; determined to protect our daughter, trying our best to be there for her, but also her brother, a forgotten victim in this web of eczema and allergy. When he got chickenpox aged 3, I couldn’t give him a mummy cuddle, because once again my feisty daughter was in hospital fighting yet another skin infection. Being separated was hard on us all, but hardest for brother and sister unable to comprehend ‘why?’.
That time when we left the hospital, the ignorant taxi driver handed me a rag, instructing me to wipe her sore face, refused to move until I wiped “dirt off her face”. It wasn’t dirt, it was eczema; we went home, we cried.