Wednesday, May 27, 2009

Getting to know my child....

At this point, we don't have a diagnosis that explains why little Ben is so severely delayed, but this much we do know - Ben is not a typical one-year-old. In addition to Ben, we have a 3 year-old daughter, Sarah, who is a vibrant, articulate, cheerful, smart, and oh-so-funny pre-schooler. Having Sarah first, we have had the good fortune to experience the trajectory of expected-textbook child development. Sarah has met every milestone either exactly on time, or a smidge early. In contrast, Ben has been delayed from the start. Because he spent a month in the NICU with some severe illness, for many months we sort of "gave him credit".... thinking he's a little behind, but would catch-up. At about 6 months, when he continued to face-plant himelf into the floor, unable to sit up, we had to admit there was a problem. The neurologist agreed with us.... something is wrong. Maybe a brain injury. Maybe a genetic disease. Maybe a chromosomal abnormality.

My thoughts...... Will he ever speak? Will he ever walk? Will he ever be able to say "Mommy"? What will our friends think about this? If Ben has "special needs" (a term I sort of hate, but which is accurately descriptive), will our family and friends still love him as he deserves? How will I cope if he's never potty-trained? How will we adjust if he can't walk??! Will I ever be able to go back to work? I don't want this to be real. I don't want this to be real. I don't want this to be real.........

In steps Zen. As a fledgeling follower of Buddhist teachings, I remembered that I needed to breath. I needed to become comfortable with the feeling of total groundlessness. I tried to remind myself that this situation would only carry the meaning which I assigned it... could be either good or bad... up to me to decide.

That sounds easy enough. After a year of dealing with A LOT of medical problems, I'm realizing that everyday requires a renewal of my committment to find peace and contentment within this situation. Parenting any child is a difficult undertaking. Throw in a bunch of oozing eczema, aspiration pnuemonia, and random but frequent vomitting, and you really might find your resources taxed. At least I do.

No comments:

Post a Comment