Just a short while ago, I experienced the most ear shattering, heartbreaking ten minutes of my life. My daughter was crying hysterically, and I was the cause of it.
It was 11:35 in the evening, and my daughter was having difficulty breathing. Her nostrils were clogged, and I had taken the decision to clear her nasal passages to facilitate her suckling (not being able to breathe, whilst suckling results in a hungry, agitated baby). What ensued was ten solid minutes of crying. I looked into her beautiful brown, trusting eyes and wondered if, in that moment, she viewed me as her arch nemesis. I was the one person that was hurting her, but I was also the only one who could make things better. As she cries her lungs out, my sister calls from the room “See to her, see to her! ” I nearly flipped – it’s because I’m seeing to her that she’s making such a racket to begin with. Throw in the fact(s) that I just saw a mosquito on her (already blistered) face, skin sheered of her left ear and her face half her face was covered in blood, (she’d scratched open one of her scabs in her sleep, and some parts were already drying). Oh, and did i mention that she was sweating too??? I was one stressed out mommy.
Raising a little one with epidermolysis bullosa is emotionally draining to say the least. Popping blisters, wrapping bandages, dealing with infection… all the physical aspects I can do, it’s the emotions that go with it that leaves me exhausted. I remember a time when she was much younger, that she’d cry for an hour straight as we washed and bandaged her entire body, and after every wash, without fail, we’d plop ourselves down on the bed, grateful that it was finally over.
Yet I am grateful. This EB journey has shown me what true compassion really is. It has taught me to love beyond the exterior, and to do my best for others, even though it may pain me to do so at times. Through EB, my daughter has taught me the meaning of resilience and trust. She has reminded me of how beautiful and fragile life really is. But most of all, she has helped me understand my relationship with God just a little bit better, and for that I shall be eternally grateful.