Inclusion: Part 2

To begin, we had our sights set on a couple particular families in the church. One of them was...well, us! 

The timing seemed perfect. It had recently come to our attention that some nursery workers were feeling...well, timid, I guess, when it came to working with Keira on Sunday mornings. No shame! I would, too, if the tables were turned. I saw this as the perfect opportunity. I volunteered to spend a few weeks staying in the nursery with Keira. That way, each worker, as they went through the rotation of volunteers, would have an opportunity to observe how I interacted with Keira and how I included her in the nursery activities. 

The results would be threefold: First, more people would have the opportunity to learn how easy it is to care for and love Keira. 

They would experience Keira as a person, which could potentially open up their perceptions of disability. This could lead to better care for Keira but potentially many others. And finally, this in vivo training could be a model of how to introduce and acclimate other kids/teens/adults with unique needs in our church. 

The first Sunday left me with very mixed feelings. Acknowledging that the milieu certainly changes from week to week with different volunteers and different children, the nursery workers seemed a bit standoffish. It felt like they were relieved to have someone there to watch K and not overly eager to learn more about her. I got the impression (which, again, is likely overstating it), that without me, Keira would be left to sit by herself in her chair in the corner unless she started to cry. And in that case, we would be called in to soothe her. 

Keira and I got to work that morning. I gathered her up, along with another kid or two, and read them books. I pushed her chair right up to where the kids were whizzing by with their dolls and cars and balls. I enlisted a youngster to roll a ball back and forth with us. I sent K down the slide. I scooted her up to the table at snack time. I even let one little boy help push her syringe when I was feeding her ("Keira's mouth doesn't work like yours, so she has 2 belly buttons! Isn't that a silly way to eat?") I held her hands and did the motions with her during singing time. I explained to the kids (loud enough for the grown ups to hear), "Keira doesn't talk, but she loves it when you talk to her! Keira can't walk, but she likes to watch you play. It's so nice when you bring her a baby!"

Though I didn't see much change in the investment of the workers, per se, the kids themselves amaze me. One little girl blesses me every week when I hear she's kept Keira in supply of baby dolls. Last week, when I went to pick K up after church, all of the kids were playing freely except for one little boy, who was crouched and snuggled right up next to K in her bouncy seat. The attendant reported that Keira had begun to cry, so he had marched over and talked to her until she started smiling!" Oh, sweetness. All from a little guy who himself often struggles with being left in the nursery. I'm so thankful for these little friends and try not to worry that they'll distance them self from her as they grow older together. 

My somewhat dissatisfying experience in the nursery was paralleled at the same time with my efforts to hire a part-time caregiver. The gal that we hired in January graduated from NNU and moved on, so once again, I was in search of someone to watch Keira from 3-6, 4 afternoons per week. 

Me? I though this job was cake! $10 per hour to watch this ray of sunshine, to keep her company and hang out with her, with full license to study and talk on the phone on the job. Not so much. I posted the job on Facebook, care.com, and the NNU job board. I advertised on a couple of list serves for people who do this kind of work.  I enlisted several Professor friends to be on the lookout for students who might be appropriate. 

I DID receive some calls. Quite a few, actually. "I'm learning," I thought! "I've got a much better response than last time I did this." But then, as you'd expect, my list of possibilities dwindled. A few seemed immature or needed more hours than I could provide. A few were overqualified, so though they were wonderful, $10 an hour was way too little for them. I actually ended up interviewing four women and was very optimistic about 2 of them. Of those, one I never heard from again and another turned down the job in favor of a different job. 

Shoot! Why is this so hard? I  have been quite confident that in spite of her disabilities, once people met Keira they would no longer have any doubts about whether or not they could care for her. They would see how loving she is and would enjoy spending time with her. Now, I was having to admit that my motherly bias was clouding my vision and expectations more than I wanted them to.

 It must be that people are scared. And more scared now than they were a year ago. As Keira grows, it's more and more clear that she is not like the other kids. The differences are unknown, foreign, and hard to ignore. Disability (heck, difference, for that matter) forces us to come face to face with the reality of brokenness in the world and in ourselves. It's uncomfortable. I admit it. Not that I am uncomfortable with Keira, but I would be if I were not her mother. 

To me, this realization is both disappointing and scary. Disappointing because upon seeing how easy it was for me to love Keira, I was sure it would be easy for others to do so as well. I wanted (want) others to have this opportunity with Keira and with others who might be on the fringes for one reason or another. All I had to do, I imagined, was make her available to the community. I thought this would be an easy job and it, sadly, is not. 

It's also scary. Scary because part of the motivation for enlisting so many others in our journey is to ensure that she will be cared for for the rest of her life. Whether her life is long or short, whether with Jeff and me or without, I want her to be loved.

This realization is poignant to me as a Christian. 

Keira is beautiful inside and out. It's indescribable. She has a smile and a laugh even in the most difficult circumstances. She looks at me like she's glad to see me no matter what. She doesn't expect much. She doesn't hold a grudge and is quick to forgive. Her eyes lock on you, so clear and blue, and there is no doubt that she loves me. And I wonder: is it possible that I'm not here for her, but she for me? 

Because she is love. Just love. That's what she has and what she is and nothing else. She will not do what the world would have her do. She has no worth in the world's eyes. But it doesn't matter. Because, in the end, what really matters? Love. Just love. 

But people are frightened by her! They have the opportunity to experience this love, to give love, and receive love, but they shy away. Underneath, I believe, is a fear:  If I get too close, I won't know what to do. I won't be able to fix her. I'll feel like a failure. I'll feel so limited. Because I am limited. We are limited. 

God doesn't give you more than you can handle. Special kids go to special parents. A child with special needs is a gift. Gag. I hate these cliches. 

Why do they bother me? They aren't necessarily untrue, I guess. To me, they seem sloppy and disingenuous; a way for others to say, "everything's ok," and not have to sit with any suffering that comes with it. The truth is, I DO, in spite of everything I ever knew or wanted, find her to be a profound blessing. A gift. 

I have this gift, and I want to share it. It's hard to reconcile that with the difficulty in it being received. And that's what makes her like God, or of God, right? All she is is love. But people are scared of what she will require of them. 

*IMPORTANT! In the end, we found a perfect solution for our afternoon care needs. All along, a teenaged neighbor girl has been wanting to help us out. She has known K since birth and even did the March for Babies with us, back in the day. I didn't go to her directly in the beginning because, since she is so young, I can't yet pay for her through Keira's insurance. We're finding a way to make it work. So thankful for this young lady.