Having a child with significant medical issues, I find myself measuring time in non-traditional ways. When someone asks “When did you move into your house?”, I say, “Let’s see, it was after Ashley’s second brain surgery but before she had her gallbladder and appendix out.” I could have just as easily said that it was April 1998, but that is not the way my internal time clock worked after adopting Ashley.
I adopted Ashley, now 13 years old, on the day she turned two. She had been born 14 weeks prematurely to an alcoholic birth mother, and from the moment of her birth has faced many challenges to her physical health. Besides being diagnosed with Fetal Alcohol Syndrome and Epilepsy, she is also deafblind, has a G-tube (which is only used for her many medications now), and has a rare condition called juvenile xanthogranulomas. That rare condition is the source of the many brain tumors she has had (and the three she currently has).
As hard as I tried when she was younger to measure her days in traditional milestones, it was difficult. Most developmental milestones have come late for Ashley, and it was always easier for me to describe her life in terms of her medical conditions, treatments and crises. I’m not proud of that, and if I could do it over, I would try to do things differently. I think, though, that when a great deal of your child’s life is spent visiting doctors, therapists, and hospitals, your life begins to revolve around those things like the moon revolves around the earth. And changing that perspective can sometimes seem as difficult as wanting the moon to go in a different direction.
As Ashley has gotten older, and as her health has improved, I do find myself focusing less on those medical timelines. I can now talk about “last year’s vacation” and “when Ashley goes to high school”, rather than “her next MRI 2 months from now”. Since Ashley was my first child with significant medical issues, I know I defined her in the beginning as a composite of those issues when I should have been defining her as the vibrant, happy, mischievous child she has always been. It took me a while to learn that lesson but I did master it before adopting my other daughter, Jessica (now 17) and my youngest son, Corey (now 15).
Ashley has always been my teacher – on this issue and on many, many more. It would help if I wasn’t such a slow learner sometimes!