One thing I was sure of, in those early days, is that I did not want my life, or my family's life to be defined by this--a sick child. It would always be part of us, I knew...but not who we were, I thought.
As the days, months, and now years (thankyou, Lord) go by, I realize I was wrong on both accounts (*Paul* I told you I could say I was wrong) . We were in denial and it 'is' (having Lilah) who we are.
Because of my background, I had more of an idea than most about the implications---having a special needs child would affect a lot of things....where we lived, what we drove, what schools we chose. But, I did not realize it would affect every.little.thing....there is almost no aspect of family life that is not impacted differently than it would be if Lilah were "neuro-typical" (did you know this is one of the PC terms for non-normal? I speak a new language these days...turns out all that space I didn't think my brain had for higher level French was being saved for this). I am sitting here frozen at my computer trying to come up with examples that don't sound lame--laundry, car-trips, dinner, shopping, visiting friends. None of those get at the fact that Lilah's care, her limitations, her likes and dislikes weigh into every decision we make. The burden of these things and worries over her future can rest around our shoulders like a lead balloon.
We decorated our tree last week...made a big deal about getting, bringing in, and lighting a giant Christmas bush. In my mind, our children would be gathered on the floor, under the lights, as Paul and I sang carols. Don't laugh. The reality included the Backyardigans blaring and Lilah chewing on the cords of lights--and I snapped. I turned off the beloved cartoon and yanked the lights out of her reach...bellowing about how I was sick and tired of every frickin family event occurring with "we're your best friends the Backyardigans" as the theme song--putting an abrupt end to all merriment for everyone. It was good times. Merry Merry.
Like I said; this is who we are. Like it or not (hate it), we are the family that watches TV to get thru family meals, that skips more events than we attend because it's too much trouble, and that carries more worries and what-ifs than we care to count.
Every few months, it--the magnitude of all that having a child like Lilah means--hits me. And I get all down and crabby. Morose and, well, if I'm honest,....angry and full of self-pity. This is not at all what I want for my life, not to mention my daughter's or the rest of my family. I just want to be normal (this, btw, is a lie--there is no normal).
|They're best friends.....my backyardigans:)|
But, it's who we are--good and bad. We are the family that appreciates each day, that rejoices in little moments, and that is raising some truly incredible children (by no merit of our own). Paul and I are better people because all we've been through. We are thankful and do enjoy life much more the ship we're on--sometimes it feels like the Titanic, but I'm pretty sure it's the Queen Mary. And besides, there is no switching mid-voyage, so we might as well break out the champagne.