Dear well-meaning society
When you ask to hold my daughter for the first time and I seem hesitant, please don’t feel offended; I am merely looking out for her well-being. Those close to our family, and who’ve been with us from the beginning of our EB journey will tell you I’m not trying to be difficult.
When my daughter was diagnosed with Epidermolysis Bullosa in March last year we ,as the family, took it in our stride as we were only too glad that she didn’t have the nasty infection the doctors initially thought she did. But with EB came a whole lot of other lifestyle changes. The presence of EB meant I could no longer wash my daughter in normal baby soaps and shampoos, nor could I make her smell heavenly with those extra baby scents. I could no longer use wet-wipes to clean her bottom and I also had to be weary of how tight the elastic in her nappy was. No longer could I wash my baby on a daily basis, nor hold her as I pleased. Everything about her was special, and though it was challenging, I wouldn’t have it any other way.
When you ask to hold my little butterfly, please know there are many things I need to take into consideration before responding. They may seem trivial to most, but these considerations can be the difference between aggravating her condition and helping it heal, and are often things many take for granted. If you’ve requested to hold my daughter in the past, you’d know that the first thing I’d ask of you is to feel the texture of your clothing. And whilst it might be a tad uncomfortable and even intrusive at times, I need to ensure that the clothing of whoever is holding my baby girl is not going to harm her in any way. What I generally check for is softness, breathability (is that even a word), and whether the clothing has any protrusions or not. Should your clothing meet my daughter’s skin’s standard, I’d probably then check if you’re wearing any jewellery, as this too can cause blistering to her skin. This is generally followed by doing a mental check on what she’s wearing and what the current temperature is. And lastly, I’ll need to consider how much she’s been ‘handled’ for that day as that too has an effect. If you manage to pass my round of questioning and I agree to let you hold her, I can almost guarantee that you’ll put your hands out so as to pick her up by her arms, and with a calm face (and panic in my heart), I’d gently inform you that holding her that way could form the worst of blisters and that you are to take her by her bottom and neck instead. Please know that giving her to you intensifies my worry. I apologise in advance if I watch you like a hawk whilst you try holding my very active baby in your arms; I will be looking out for subtleties that none but an EB mom/ caregiver will see.
Do not think me rude if I decline your offer to assist me with a diaper change even though I am visibly struggling; sometimes struggling alone is easier than having to instruct someone on how and where to hold my daughter’s arms and legs so that your grip is firm enough to hold her in place, yet loose enough not to cause any damage to her skin. I cannot bare the emotional turmoil of seeing someone else in pain because of the manner in which I clean my daughter, nor the untimely questioning that comes with it. Sometimes it’s just easier to pin her down on my own than to ensure that my trainee is following my every instruction (including those I forgot to mention) and worrying about the outcome.
I have vowed never to ask non-family members to help wash my little girl, as the sight of her skin can be very traumatising for some. It’s only ever been my husband and I, our immediate family and hospital staff that has had the privilege of washing her, and even then the pain I saw on their faces had a much greater impact than the cries emitting from my daughter’s being.
As I think back to my childhood, I remember the games my parents used to play with me and I’m saddened that I’ll never be able to have that same experience with my little girl. I dread the day she starts crawling, because the friction to her skin could cause devastatingly painful blisters, and I’m not quite sure I’m ready to deal with that just yet. Shopping for baby toys is a nightmare, as I never seem to find anything soft and suitable enough for her skin. Toy shopping isn’t only about toy softness though. As her momma, I even check the amount of sharp edges and grooves the potential toy has before buying it as sterilising toys should be a part of my routine so as to minimise the likelihood of infection. Oh, and of course, anything that’s harder that a teddy bear has me worried about the endless ways she can blister herself with it. I shudder to think of how her desire to explore in the coming months will affect her skin, for past experience has shown that a simple knock on the hand resulted in a blister.
Everything about her is special, from the way she eats, to how she moves and even the manner in which she dresses. EB has its limitations, but as a family, we will try our utmost to ensure that we do not limit her quality of life. I will allow her to climb the massive pepper tree in my parents’ back yard, even though I know it could negatively affect her skin.
My daughter has Epidermolysis Bullosa. EB affects what she does, but it doesn’t dictate who she will be. That’s for her to decide. For now though, I will do my utmost to ensure that she receives the best quality of life possible, even if it means I have to say no to assistance time and time again.
Thank you for understanding
– An EB Mom