When I quit working before Garrett was born, I thought: This is it. This is what I've been waiting for. I had visions of leisurely mornings in my pajamas, playing with babies and sipping coffee before heading off to the gym. y e a h. r i g h t. I did get the pajama part right:).
Everyone always says how parenthood forces you to be selfless, but I've got to say....I am not feeling it. I am feeling more selfish as the days go on....thinking of all that I've given up, the sacrafice I make, the burdens I bear.
I don't delve into lots of "resources" for parents of special needs kids because a) I don't have time, b) I really, really do not want Lilah's problems to define her, me, or our family and, c) I am sick of people telling me that she's such a gift because Taking care of her is an incredible burden and it sucks!!!! For me.
I miss the days that I could watch the news without drifting into thought about whether her meds need adjusted, how to treat the newest sore, or when she got her last breathing treatment. I want to rock my daughter without the tether of tubes and machines. I am tired of planning my life around doctors and therapies. I wonder if I will ever be able to leave her. And, I am tired of being a prisioner to it all. I wish I didn't feel that way--it feels ugly, bad, selfish.
For those of you gasping in shock....it's ok. You don't need to call my husband (he knows) or a counselor (he'd say it's normal). I am not about to jump. And, it's only half of the story--of course I love her....she is not a burden. The truth is, she is a gift. Lilah herself is beautiful, joyful, and totally innocent. It's the suffocating burden of responsibility and tasks that I hate. I write this because it's (painfully)true, and I hope that I look back someday from a different 'place'. A place less focused on me. A place that is focused out, instead of in.
I am relating to the Easter story a bit differently this year. In a tiny, tiny way more aware what it means to die so that another might live. It makes me ashamed of my self pity--that Jesus died and rose again, for me. And realizing....in that, lies my freedom.