Mama Ramblings

After a busy morning and early afternoon, it was one of those rare days when Simon and Clare napped at the same time (more often than not, Clare does not nap these days, but a morning at school then almost two hours with friends at the playground took care of that situation!). Jamie was having a bad allergy attack with swollen, red, and itchy eyes, so he was resting on the couch in the basement and watching a video. There was no one on the ground floor but me. Wow - what was I going to do with myself?? After taking one quick look at my spring cleaning list (the kind that includes vacuum the cobwebs from the corners of the ceiling and walls and reorganize the storage area), I saw that I was 85% done with my list. Without an ounce of guilt, I put the list aside, sat down in a chair, and started reading my book (if anyone is interested is "Mr. Darcy's Daughters" - a nice little book featuring the daughters of Elizabeth Bennett and Mr. Darcy from "Pride and Prejudice"). After a couple chapters, though, I put my book down and took Clare's first year scrapbook album off the shelf. It had be a long time since I had sat down with the book and really looked through it. I will pull it out for Clare sometimes, and we look at the pictures. This day, however, I read each and every page - every photo caption, every bit of journaling, and perused every picture.

It has been a while since all those emotions have come to the forefront. Weeks, maybe? I found myself tearing up as I looked back over her first year. As I read the pages documenting her four cardiac catheterizations and open heart surgery. It is still fresh in my mind how exhausting it was to be in the hospital when Clare was just in a couple weeks ago for dehydration. And I did not even stay the night with her, Shawn did. I can vaguely recall the emotions of Clare's most recent cath in September, but even that was already eight months ago. It struck me how much I now take our life for granted. Our current way of life. I had forgotten what it was like that first year. When Clare had five hospitalizations. When over the course of 11 months, we spent a total of 25 days in the hospital. Almost a whole month of Clare's first year was spent at Boston Children's Hospital. And the seemingly endless doctor's appointments. Compared to that year, our life now is a life of leisure.

When Clare went to the endocrinologist's last week, she had her thyroid levels tested (and a small victory where we are past the point where Clare needs her calcium tested anymore!). Instead of dragging the children over to our clinic to get the blood work (which I normally do), I opted to have it done at an outpatient clinic down the hall from where the endo's office is. Clare started crying the minute we walked in the room. The phlebotomist (who was extremely loud and slightly obnoxious) asked if Clare had ever been stuck before. Hmmmm... I toyed between making the sarcastic comment or the low-key comment. I settled on simply saying, "Yes, and she was just hospitalized last weekend and had a traumatic IV experience, so please use the other arm." I must say that despite the phlebotomist's grating personality, she was a master sticker and got that blood draw done in a flash. It's amazing when I think of my list of small things I am grateful for - a phlebotomist who can draw enough blood on one quick stick is definitely in my top five!

I enjoyed my trip down memory lane looking at Clare's baby book. But I am definitely glad those days are over. We still have our challenging "WS days" (as I call them) where I am once again overwhelmed by what Williams syndrome means in our life. But, as a whole, I am more in stride with everything now. I take it one day at a time!