I read a book today.
And it pissed me off.
I love reading, and for me books are as essential as air and
water for my survival. I love bookstores, and libraries. I love the cozy chairs, the little café with
overpriced coffee, and the sounds of turning pages. I love all kinds of books, and have a pretty
eclectic collection. I love using books
for research and to learn the ways in which other people live. I love reading books that connect me with
other people living with the same challenges and joys.
Which is how I found myself in a little wooden chair, feet
propped up on a windowsill, in the quiet of the bookstore, reading about a mom
and her experiences with her baby girl with special needs. And it's where I found myself getting really,
really angry.
It should have been a good book. One of those inspirational books that remind
me that I can do this, too. And I guess
it sort of was. Except for the whole,
"my baby is my path to spiritual growth, I was chosen, and I'm totally
cool with it" parts. Which,
unfortunately, was pretty much the entire book.
Glossy pictures of mom and adorable newborn baby in the knitted-by-grandma
cap. Lyrical prose about the girlfriends
who sit up all night by mom's side, bringing lasagna and beer to the hospital,
and saying just how perfect this baby is, and how it's all going to be just
fine. A stoic, but of course perfectly
sensitive, dad who doesn't want to learn anything about the baby's condition,
but tells mom, "I'll just love her.
When there's things you think I should know, you tell me." And the mom is perfectly happy with that
arrangement. The very worst part, though, is the message: acceptance takes a year. That's it, that's enough time. After a year, you should be doing fundraisers
and flying across the country to conferences and advocating at support groups.
Uh, no. Maybe it's
just me, and I hate to think I'm bitter, because I absolutely, positively love
J. with every molecule in my body. But I
don't for one single second think she was sent to me for my own "personal
growth". How can that possibly even
make sense? That somewhere in the
universe, God took a look at me and said, "You know, I think it's time to
shake you up a bit. I've got a great
idea - I'll create this baby with all sorts of complicated medical issues who
will have to suffer lots of physical and emotional pain - and I'll send her on
down so you can learn some valuable spiritual lessons." Nope, I don't think so. Have I learned some of those valuable
lessons? Sure, of course. But to think that my child's sole purpose on
this earth is to make me a better person feels like a major insult to her. If I don't learn the lessons, does that make
*her* a failure? If she isn't sweet as
chocolate cake every second of every day, does that mean she isn't quite living
up to her spiritual job? What if she
hates being sick, and doesn't want to struggle in ways other children don't
have to? What if one of the lessons I
learn is that this totally sucks? And if
I was "chosen" to have J….does that mean that people without kids
with disabilities weren't special enough?
That those moms don't have enough love, or kindness, or strength? Or does it mean they don't have any spiritual
growing to do? Sure, I can buy that
(insert dripping sarcasm and intense eye-rolling).
I believe with all that I am that you can deeply, truly love
your child - disabilities, illnesses and all -- and still feel like she got
cheated. I love her, always. But if you gave me a magic wand and the
chance to make her well, I'd grab it out of your hands faster than you could
blink. It isn't her job to help me grow
up to be a better person. It's my job to
do every single thing I can to make sure she knows she is loved.
