But . . .

Per AAP recommendations, Ellie had an appointment with an ophthalmologist today. Different from an optometrist, an ophthalmologist specializes in medical and operational eye procedures. Some vision issues people with Down Syndrome may have include a greater need for prescription classes, Strabismus (crossed eyes), tear duct abnormalities, congenital cataracts, and amblyopia (lazy eye). It is recommended that people with Down Syndrome be seen by an ophthalmologist every year, even if there doesn’t appear to be a need for evaluation. Ellie has not exhibited any vision problems so this appointment was purely to determine if problems exist that research has shown could exist. We drove 45 minutes to this appointment as it is difficult to find an ophthalmologist that specializes in children. The waiting room was packed and I found myself doing what I generally do at appointments such as these, I look for almond eyes, a parent who is here for the same checkup. We saw two doctors and Ellie did amazing. Her eyes were dilated, which I was informed, typically lasts longer for people with Down Syndrome. A typical person may experience the effects of dilation for 12 hours, while Ellie’s eyes may be dilated for 24 to 48 hours. I expected the appointment to go well, and it did. No issues were found, no need for further testing, no glasses. I felt relieved, and exhausted, as I heard these results, I turned to the doctor for small talk. “What issues do I have to look for in the future?” She replied, nonchalantly, “people with Down Syndrome have so many issues with their eyes, let us focus on that. See you in a year.” I knew what she meant, don’t worry, we can look for anything, we are here to do the work for you. But my mind focussed on those words, “so many issues.” That haunting “but” that follows Ellie, just like it does with Mya’s club foot. I found myself in the elevator with tears rising from within my chest, when I should have been happy, her eyes are perfect, however, a perfect evaluation will never be void of that “but.” Her eyes are perfect, but that can change. We don’t see anything now, but next year we may. That haunting word that makes me clench my fist and scream at a world that sometimes doesn’t feel fair. I’ve heard that word at every appointment for Mya’s club foot. Her foot is fixed, but club foot can come back. She doesn’t need casts right now, but she may in the future. It is a word that hangs in the depth of my excitement. I will continue to hold on to the positive, this word is following two very brave girls who I know can handle anything. I’d just love an appointment where it didn’t exist. But I suppose strength and positivity need to be tested. I suppose a doctor thought Mya’s foot couldn’t be casted, but we found a doctor who could. And that Mya wouldn’t be able to run like her classmates, but she is faster than all of them. I also heard that Ellie wouldn’t be standing by one year of age, but she is standing with confidence every day. That she would be difficult and non responsive, but she’s amazing and strong and the light within our home. When I think of it that way, “but” isn’t so bad after all.

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One Response to But . . .

  1. Vicki Bartholow says:

    Catherine – Ellie and Mya will always achieve and surpass goals, because you are her mother! You are an amazing mother, as your mother is. I love these pictures. Sarah is here for Thanksgiving, and loved seeing your beautiful girls. Please keep,sending pictures. Xo- VB

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