Blood-soaked bedding, this is what we wake up to on the daily. Sometimes it’s more, other times less, but this blood-soaked bedding is only a fraction of the blood my daughter loses daily.
Sometimes I wonder “what’s the point of it all?”. Why try to prevent my little girl from scratching during the day when we know that the night will bring open wounds and bleeding, blood stained hands and a clogged nose? What’s the point in washing her wounds when just hours later her bandages will be blood stained and the two hours it took to get her bathed seems as if it was all in vain. Sometimes… I just feel like letting go and giving in to the helplessness I feel. Living with EB isn’t easy, but I know giving up just isn’t practical. I know that God has given my family and I this gift of EB for a reason, and to give up on it is like giving up on Him.
As I write this, I know that I have to be strong, for my daughter’s sake if no other. And that helplessness is okay as long as I never lose hope in God’s mercy. He has gifted us this for a reason, and though we may not understand it, we push forward knowing that He has our best interests at heart and that with difficulty comes ease.
And as much as I dislike feeling helpless, this helplessness has sowed the seeds of conviction and hope within my heart. For in moments of helplessness, we find an indescribable sense of tranquility is the power of Allah. At times, helplessness comes to remind me that my reliance (tawakkul) is misplaced. Other times it nudges me towards increasing in good for His sake, seeking pleasure from none other than Him. But best of all, helplessness engulfs me like a whirlwind, sweeping me out of my heedlessness to the remembrance of my Lord.
I don’t like feeling helpless, but I love the lessons it teaches me.