After what feels like an intense battle of wills and “don’t do that’s” I feel replete as my daughter lay at my side suckling away. There are days, like today, where I feel this EB vibe is just too much for me to handle. Throw in a bit of teething and the fact that my daughter is adamant about scratching that one piece of open skin with her sharp nails and I’m done for.
I don’t think ‘the world out there’ knows how taxing EB can be, especially on the caregivers. It’s like first time motherhood with added complications as your focus cannot leave your child’s being for too long – if at all. Making food, using the lavatory, doing the washing or simply turning your back can be the difference between good or blistered/sheared off skin. There are days when I just want to leave little miss to do as she pleases, but the probable consequences thereof has me jumping up faster than one can say “No”. And there are days when exhaustion gets the better of me, and I just let her be, all the while praying that nothing bad will come of it.
Writing this post reminds me of another post I once read which highlighted that all EB caregivers really wanted was to be heard, without judgement and advice being shoved down their throat and though I know that well-wishers are only trying to assist, I cannot help but agree. There are days where I hope for this very thing, but my daily struggle is one that many would not understand. And should I feel the need to talk, I’d like to do so in my own time, in an environment I am comfortable with, but that isn’t something this face-paced life accommodates for. Perhaps that’s why the statement of Prophet Jacob (Upon him be peace) comes to mind and resonates so deeply with me when he said ““I only complain of my weakness and sorrow to Allah”. For He is The Only One who ‘has the time’ to listen us pour our hearts out in an anywhere, anytime kinda space.
There are days when I wish I could hand over my ‘EB mom responsibilities’, for just a little while (which probably explains why I love visiting my mom so much, even though the responsibility of an EB is never too far away), and enjoy just being in the moment – stress free.
Don’t get me wrong though. I’m not unhappy with God’s plan for me though as my year long relationship with EB has shaped me into the woman I am today. But sometime, just sometimes, I wish that I, as a caregiver, had a caregiver too.
