My conversations mostly consist of therapy and wheelchairs, doctors appointments (both making them and discussing the ones we've had) and IEPs, feeding schedules and medicines...what she's on, what she isn't on, what works, what doesn't work, sicknesses, hospitalizations, equipment and on and on I could go. For the first 2 years (or more) of her life I walked around with multiple copies of a 40 page manifesto of the first 30 days of her life. I was willing and able to give it out to any medical professional just so I wouldn't have to keep going back over the gory details with each new team member.
I talk about her health on a daily basis. I am constantly calculating and recalculating how much formula and water she's getting each day and how much she should be getting. Medicaid people call me, her feeding supply people call me, nurses and doctors, oh my. Please don't get me wrong, I love them all and am so thankful for their presence in our lives, but you can see where simple conversation may "stand out" to me at times. I like talking about her clothes, shoes and hair. I realize it's trivial and insignificant, but it's also a break from reality for me. It's not normal conversation for me. Normal conversation for me consists of lots and lots of medical jargon. It's become such a way of life for me that I don't even realize how consumed I am by it in this "special needs" world that I live in until I come up against "real life normal conversation" like I did this weekend.
Sophie Kate is sick today. I had to go get her from school. It has come on her hard and fast and has taken away her smile. I am back to my comfortable place beside her, talking about her to medical professionals and holding her tight as she gets stuck over and over again. I am back to wiping her mouth and giving extra meds, taking phone calls from her doctor and adjusting feeding schedules. Hours and hours will be spent holding her and trying to make her as comfortable as possible. Her dad and I will spend our nights checking on her continuously hoping and praying her breathing becomes even and regular even though we know it will not. We watch her struggle and hurt and believe we could not be in more pain if we were beaten within an inch of our lives. This world we live in, our "normal" takes my breath away still, but I will smile to myself when I think back to the simple words of a stranger, "She looks just like you." What a privilege it is to be her mother.