Friday, May 3, 2013

Disability is Inconvenient

I've had a rather bad attitude about Addison's disability lately. Don't get me wrong. I love her. I love her dearly.

But lately as Carter has been crossing over that hump of easy-going toddler to devil-toddler-you-can't-take-your-eyes-off-for-a-second, I just feel that it's a bit unfair that not only do I have him in this difficult phase, but Addison is right there with him as well.

I think to myself- come on. I have poured myself into her for three years. Therapies, positive attitude, work work work- isn't it time that she "snap out of it?" Isn't it time that she wake up and say "Hey! I'm three years old! Time to start growing up!"

She is very young for her age. She acts young, she learns slowly, she operates much more like Carter's age than her own. And while having them close in age is a huge blessing and wonderful learning tool- it also is very difficult at times to mother their separate learning curves- in the same difficult stage.

With this bad attitude clouding my mothering, I've recently stopped and wondered "WHY am I mothering?" What is my purpose in teaching them to grow up? Is my end goal for them to be the children that I think I deserve? Is their level of ability supposed to equal my level of work?

I think of the people who so vehemently say that individuals with disabilities don't deserve life because their entire existence will be inconvenient. I think of those who look down on those who can't function on the same level as themselves simply because they are lesser in ability and therefore assumed "lesser in worth."

I think about the life that Addison has in front of her. I'm sure that the inconvenience has only just begun. I see how quickly Carter learns and how he effortlessly sails into the next phase of life while she struggles just to maintain the one she's in.

I see how it's supposed to be. And I grieve the inconvenience.

Selfish? Yes, it is. But honestly in order to realistically press forward, sometimes I need to stop and grieve. Selfishly. As I think about ME and what this means for MY LIFE and how I hate to see her struggle over things that are supposed to be so easy.

And then I grow up. And remind myself- it's not about me at all.

Motherhood is not about the mother. It's confusing because the very word "mother" is in the title. But on the very day that all of a sudden that day is strangely all about the new existence of this tiny person instead of all the work I did "laboring" this person out of me....it is no longer about me- the mother. It's all about the ones who make me a mother.

When I think about mothering a child with a disability- when I get a bad attitude about the lack of progress, the extra work that I have to put in- I remind myself of this truth.

And when my focus turns from inward to outward, suddenly this doesn't seem so hard.

When it's not about ME and how this affects ME- serving becomes a privilege.

Especially when it comes to a beautiful little girl who loves life, who communicates volumes through her smiles and hugs, who thrives at school, who participates right alongside her brother in everything, who can make a horrible day suddenly better through whispered chatter.

She is delayed. It is inconvenient. Sometimes this makes me quite frustrated because it seems like my work with her is going nowhere.

But that's when I'm thinking about what it all means to ME.

When I think about Addison- and what life means to her? Helping her check that next thing off her milestone list is exciting. I don't care that it took us an extra year and a half to get there when I get to see the look of pure bliss on her face along with her constant enjoyment of living a good, well-deserved life.

When I think of someday strangers looking at Addison as an inconvenience to society and lesser in worth because of her ability? It makes me sad that those same people won't see everything that she IS doing and how hard she worked (and succeeded!) to get there. I wonder why the world views disability based on how it will affect THEM, the outsider looking in, instead of the other way around.

I would say that "love doesn't see inconvenience." But I love Addison so much it hurts, and yet at times I still get frustrated by the extras. I think love DOES see inconvenience- but it doesn't change a thing in the intensity and amount of love given.

I am a flawed mother on so many levels. So many times I hear "Wow you are so amazing- I don't know how you do it!" and I think "if only you knew."

I am selfish. I get frustrated. I get annoyed. But then I remember I am a mother and serve accordingly- even when it means sacrifice to myself. Not "amazing". Just a weak vessel doing the job I was designed to do.

I don't think that my effort into motherhood will be equaled in achievement of my children. I don't think  my job is to push my children to be what I "deserve". I don't think the "why" of motherhood  is as important as the actual "doing."

God has blessed me with two beautiful, perfectly created children. My motherhood definition is to meet them right there where they are and mother (serve, teach, nurture) to the best of my ability one day at a time.

Even when it is inconvenient.
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