This evening I would like to make a special request; I’d like to ask that you keep my little girl in your prayers.
The little fighter that she is, she rarely complains of any pain she may be experiencing. She bites it out and only whines when we’ve touched an open area or accidentally pulled off her skin. Despite her condition, she smiles at the world and doesn’t allow her moments of pain to ‘define’ how she interacts with everything around her.
I know a blister doesn’t seem like much to most people, but to an EB caregiver, it’s a sign of the regression of your beloved’s skin. It’s a sign that pain and suffering may be on its way, and if not addressed soon enough, it could lead to the breakdown of a larger area of her body than what you are used to; a shattered dream of sorts. A blister symbolizes caution, for if your caution isn’t cautious enough, you could end up doing more harm than good.
Like when changing her nappy this evening, I noticed a significant amount of blood caused by her little bottom rubbing against the nappy throughout the day. Or when I changed her clothing, only to find that the slight rubbing of her soft pants against her skin had resulted in a blood blister.
Funny how something insignificant to one person becomes a big deal to someone else. And how insignificant acts can make the world of difference depending on the situation.
I guess what’s most amazing about all of this is that my Rabb chooses to use my daughter’s condition to teach me aspects of belief in Him that I may have simply forgotten. Like how the progression and regression of her skin reminds me that our faith in God will rise and fall, and thus we should never be complacent in ‘the good times’ as I have been. Through the breaking down of her skin, he teaches me that nothing is meant to last, and God ultimately wants us to see things for what they are, so that we can once again do our best and work towards being closer to Him.
On this beautiful evening I’d like to ask that you pray for my little girl; pray that God rewards her for everything she’s taught me and for always reminding me of Him. Pray that God heals her wounds and allows us all to take lesson from the beauty and strength that is intrinsically her. And finally, please pray for all the butterflies across the globe who endure more in an hour than she’s endured in the year and a half she’s spent with us.
Ameen!!! And I pray for her mom who endures with such grace, patience and humility. And I rejoice in the knowledge that baby and parents have a special place awaiting them in Jannah for surely what other recompense can there be for those who are pleased with Allah’s decree.
May Allah grant us the patience and strength to endure all He has put out for us and gift us with the beauties of Jannah and reunite us there with our loved ones. Ameen.