Thursday, April 9, 2009

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'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 that, lies my freedom.


Anonymous said...

I just think you are just amazingly brave...
brave in that you wake up each morning and face it all,
brave in that you open yourself up to your family and to us (who get just a glimpse of your amazing struggles)
and brave because you know truly what it is like to lose something (your dream of what Lilah's life was going to be like), but yet gain so much more (the beauty of what her life is and your amazing role in it)

Praying that you all have a joyful Easter.

lukeandsarah said...


Elizabeth Myatt said...

Not sure what to say ...except that I love you and I love what you are teaching me. He is Risen...He is Risen Indeed!

Anonymous said...

I must comment again......because again I say you are an amazing writer and communicator. I can see you publishing a book someday if that's what you choose to do. I know that it helps you to put "in print" your thoughts and feelings, but you're honesty is helping others. I felt a little of the same burden caring for my disabled mother for so many years while I was having and raising my children. It was not the way I thought it would be. Everyone told me what a wonderful daughter I was, but I didn't feel wonderful as I complained and felt sorry for myself. Yes, what you are feeling is normal. May you have a wonderful Easter!

Rachel 'The housewife' said...

Oh Gina, I know your pain. Over the last few weeks I've gone from being madly in love and happy about my place in life, to hating where I am, missing my freedom, wishing for something else. I love my boys, but day after day of worrying, stressing, freaking out over nothing is taking its toll.

I hope that I can look back and be at a different place too. And I don't really think its selfishness. At least I hope that its not anyway.

Holly Priscilla said...

Your kind of honesty keeps me sane! I'm sorry everything's so very hard right now though, with no real relief in sight. It's exhausting even thinking about your routine. I shake my fists on your behalf.

Amy said...

Again... such perspective and thought-provoking words. May God bless you for the way you are blessing others with your honest writing.

Happy Easter to you and yours!

The Leonards said...

I love you, friend. I agree with so many are brave, you communicate in a beautiful way with such honesty, you are strong, and you are a blessing to me. I don't really know what to say, except that I am praying for relief from sickness and fatigue and that you would not feel alone in this battle. Thankful for a Savior who SAVES us in EVERY way.
Enjoy a BIG ole bowl of strawberry pretzel salad for me!

J. K. Jones said...

Best post I've read on your blog and best shortnessay I've read on the topic. For what it's worth.

Many of us pray for you, often many times per day. I have nothing but admiration for you and what you do

Cade and Cora said...

You are so selfless. You may "feel" selfish, but you are human and anyone in your situation would feel the same. I do too. The truth is that you love your kids and you do anything for them. Life gave you lemons and you're making lemonade! xoxox