Since my blog focuses on growing up and living with X-linked Hypophosphatemia, this is a good time (Father’s Day weekend) to write about my father’s role in my life.
My early memories of my many medical appointments as a child were of having my blood drawn regularly. I still have to have that done about every three months, to monitor how well I’m responding to my medication. My memories of my childhood visits are of sitting on my dad’s lap while the nurse drew my blood. I did it so often that I now have no problem being “stuck” with a needle.
I remember my father saying to me, as the nurse was getting the needle ready, if I didn’t cry he would buy me a box of Cracker Jack after it was all over. I loved Cracker Jack, so being tough while I got stuck with a needle was definitely worth it. In retrospect, I wonder if he was the one who didn’t want to cry when I got stuck with a needle.
Last week, when I went to have my blood drawn, the (new) phlebotomist stuck me in my right arm, filled up two vials, and taped on gauze, telling me to apply pressure. You know, the usual. Then she realized that she didn’t get enough blood. So, I stuck out my left arm for her to stick and get two more vials. When I left the office, I was thinking about the box of Cracker Jack that felt I deserved! Two days later, when my doctor’s nurse called and said they needed MORE blood because they had made a mistake with the vial for the parathyroid hormone test, I was annoyed. After I went back to have my third “stick” in four days, I really thought I deserved a box of Cracker Jack! I even considered calling my father to complain about my bad luck! But I didn’t. The memory, though, cheered me up. I may still get a box yet.
Nowadays, my father asks me regularly, “how are your legs?” or “how’s your rickets?” He usually follows up that second question with, “I know it’s called something else these days, but all I can remember is ‘rickets.'” In 1961, when I was diagnosed, it was called Vitamin D Resistant Rickets (as opposed to nutritional rickets.) Today, it is called X-linked Hypophosphatemia, or XLH for short. He is the only person who asks me that question regularly and I appreciate his love and concern.
He has aged quite well and mellowed out quite a bit over the years. He still has a great sense of humor and is as handsome as ever. I feel very lucky that I still have my dad when many of my friends do not.
So now, I’ll post a photograph of a painting I did of him when I was in high school. Our family camped each summer in a pop-up camper, and I painted this from a photograph that I had taken of him on one of our camping trips.
He’s not nearly as grouchy as he looks, then or now. I favor him, especially with the morning head of hair and before the first cup of coffee. Thankfully, I don’t have as much facial hair!
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