Lamp doing some serious tummy time in therapy. She is never on her tummy…so this is a big deal. Also, it’s a rare moment when I get to stand back and see her from the outside looking in.
Some things in life can be categorized into “us” and “them” type situations. For example, when I was single and in my late 20’s sometimes it felt like it was “us” the older bachelorettes vs. “them” the married women. There was a perspective us single gals had that the married ones didn’t–especially if they were married at a younger age. And then when I eventually got married, I became a “them.” Then there was being married without kids (us) and now being married with kids (them). You start out as an “us” and move onto a “them.” The thing is, you don’t always become a “them.” In some situations you might always be an “us” and you’ll never have the perspective–for better or for worse–of being a “them.” Sometimes the journey from “us” to “them” is a happy one like getting married or having kids. But sometimes going from “us” to “them” is not positive–like getting divorced or being widowed or having a child die. If you have the experience of going from an “us” to a “them” then you know both sides of the coin, you have an understanding and a perspective that some people and maybe even most people will never have. Maybe you were once married and are now divorced. You remember what it was like to be an “us” because you were once that way too. You were once happy and blissful. You probably remember what you used to think about all those divorced “them’s”…and now here you are. And all the happily married “us’s” won’t really be able to fully understand what you’re going through, not because they don’t want to or because they’re not compassionate enough, but because an “us” can never truly understand a “them” unless they become one. It’s just the way it is. Or maybe you had a child who died and find yourself in the worst “us” and “them” category of all. All of us “us’s” will never understand the depth and the constancy of your anguish. As a “them” you can remember what it was like to once be an ignorant “us” not even thinking about the beautiful blessing it is just to wake up to each other each and every day. And maybe you long for the days of being an “us” or maybe you just resent that everyone else gets to be an “us” while you carry the constant weight of being a “them.” I’m sure there are a lot of holes in my logic here, but here’s my point…
I remember what it was like to be an “us” back before we had a daughter with special needs. And this is where the honesty stings a little. I don’t long to be an “us” again, that’s not it, I just wish I could have been a different type of “us.” I certainly wasn’t callous towards those with special needs, or to the families of those with special needs. I respected them…from a distance. I thought they were courageous families who deserved a round of applause…over there.
When I’m out in public with my girls sometimes I get a sense of this “us” vs. “them” from those around me and I get my guard up, I feel ready to pounce and ready to shield my daughters from the judgements, the polite smiles and the “it’s-not-nice-to-stare’s” we sometimes hear mothers telling their curious children.
And the reason I have my guard up is that I know what it’s like because I was once an “us.” In some ways it’s like I’m facing myself back in my “us” days and that’s been a tough pill to swallow. I never would have been rude to a baby like Lamp, or to her family but deep in my heart I would have thought of her as “other.” Never in a million years would I have thought of myself as being better than any one with special needs–but my actions might have said differently. I probably would have encouraged my daughter to be nice and interact with her politely on the playground, but I would have excused myself and my daughter from the responsibility of actual friendship.
But here I am…a “them.” Now that I’m a “them” I want people to know how much of a regular baby she is, with regular a baby personality and regular baby feelings. I want people to know that as she grows and starts looking for friendships and kids to play with, that she is just as worthy of your child’s friendship as any other kid. She should have opportunities–to dance, to study, or to do sports and activities that any other kid might want to do, even if there are some serious limitations. I don’t want people to count her out. I want this difficult balance of seeing past her disabilities, while at the same time making necessary and respectful accommodations when possible. I’m so grateful that people are kind, but I want more than distant kindness for my little Lamp.
Coming to terms with my own ignorance and prejudices is not easy. Especially since I’m hoping and praying that other people aren’t like me…the old me. Of course it’s that same realization that also reminds me to be easy on others, to allow them to grow in their understanding at their own pace. This marriage of “us” and “them” seems impossible–to hope that others see what you see, when they’re standing on a completely different mountain top. I want happy outcomes and help and strength along the way, I want other people to step-up, while I practice patience and understanding.
I think what I really want is grace.
Go here to read/listen to an excellent talk on grace.
Oh Amy! So well said. You've given me so much to think about.
I really love this post. While we don't have kids yet- or deal with special needs on a daily basis, you're blog has really opened my eyes- so thank you for that. I don't think I realized how much I was staring/being awkward/insensitive until I started reading your blog, Regean's blog, and you special needs spotlight. You know, you never think you are being *that* person until you really stop to think about it. The other day, I saw an amputee in a wheel chair and I made a conscious effort to make eye contact and smile- I don't say that in an "I"m so awesome way." I just say that because YOU are making a difference and I wanted to just encourage you a long the way. 🙂 "The answer is grace." Exactly.
It's 5 am here in Utah and I've been awake off and on all night thinking about this same situation with my daughter. I too have been weighing the fact that I'm an insider now rather than an outsider looking in and trying hard to understand and grasp this new perspective. And it's hard. Like you, I want my little girl to have all the normalcy's that are just commonplace to others. And yet I have to accept that this may never be the case. So hard!
Your words were beautifully stated. Thank you for taking the time to write them out to share with us.
one of your bests posts EVER…thank you. amazing.
Amazing post, Miggs:) Your girls are so beautiful, and deserve everything that is good in the world. I wish we were nearby so that we could have playdates, and watch Lamp and Audrey parallel play the way PSP and Graham used to. I wish they could be in Mommy and Me gym class together:) I miss you, and look forward to renewed friendship for our big kids, and deep friendship for our little ones:) XOXO
Beautiful!
Alexandra
Seems like when we know and care about one of "them" we have to appreciate the fact that one of "us" could become one of "them" at any moment. It's easier to remember this with friends we love– it's harder, but also important, to remember this each time we come face to face with a new one of "them." Your blog is always reminding me of this and I'm so glad. I'm shy with new people but I think I need to get out of my comfort zone more, especially around someone who might feel like a "them."
Thanks so much for this post and for linking to that amazing talk! Sheesh, why didn't I think of that piano analogy before?? So beautifully simple.
I have enjoyed reading your story, as well as the special needs spotlights. It helps gain understanding and perspective that the "us" people don't always understand. Like to look people in the eyes, etc. It's helpful, because honestly sometimes I don't know how to act, or what to say in a lot of situations. So here's my question. Being in the "us" category, (and maybe I read your post wrong), but what advice would you give to an "us" mom whose child is staring at someone different? I likely would have said, "don't stare, it's not polite" Do you find that offensive?
I loved this post. I have had so many similar thoughts and feelings. IF it consoles you at all, in my journey from "us" to "them" I have found SO much more compassion and grace (on the part of the "us's") than I fear I ever showed or felt when I was one of them. (ha – these pronouns are mixing me up – which is maybe a good point itself) People are so very very good. There will always be bad apples, but I have a firm testimony of the genuine goodwill of most people everywhere. :> Have a wonderful weekend!
Thanks everyone for your kind words. These posts are always a little scary–I put myself and my family out there a little more.
M-A-M: I hope you find help and support for this new change in your life. God bless.
Suz: Dude! We got to get the fam's together again. Sigh…wanna come to Texas? I know I've made it sound so appealing. 🙂
Deb: Love you.
And Giles–No, it's not necessarily impolite. I too have found myself saying the same thing to my daughter (not in a special needs sitch though). But I think for me, and for a lot of the moms, let the kids ask questions–let them come up and meet our children, see that they're "real," approachable and not scary or too different to interact with. And it's a great way to open up the conversation with the parents as well. But like I said in this post, I'm really not offended because I know what it's like–I was there. I know people are trying to do the kind thing, but I think taking the opportunity to let your children ask questions and inviting them to ask the mom/dad of another child is a great way for them to learn and for special needs families not to feel like the elephant in the room. In my experience I don't know of a special needs family that doesn't welcome open and honest questions.
Such a great post, I agree one of your best. I am one of the married couples "us" without children. Being on the infertility journey really starts to bring out the "us" and "them" mindset no matter how hard i try to ignore it. I too wish that more of the "them" would open up about the struggle they faced when they were an "us."
Thank you so much for your honesty!
Loved this post Miggs:) I can say I totally know what you're saying.. the "us" vs "them". I'm so happy that you are honest in your posting! I'll be honest, even when I saw you guys again in NYC it wasn't an "us" vs "them" cuz we were already in the same club before lil' Lamp… But it makes me ponder the way we act toward others without even really knowing it. Classifying ourselves and others naturally. Some of life's truly satisfying relationships come as surprises and I hope that I can be a little less "us" vrs. "them" I think it's really great that you talk about what you want for Lamp, how you want people to be and act toward her. It really just makes EVERYONE more apt to grow, learn, and love a little more easily when everything is just out there, honestly! You guys really are awesome… not in the "awesome for you guys… "…over there… kinda way! for real:)
Amen sister.
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share
Thank you Anon.
Miggs, you write well. And you're especially gifted at tackling these difficult topics and making your point without sounding insensitive. I love this post, and this is something I've thought about a lot. I remember watching segments on the news about autism and the increase in the number of children diagnosed before Beckett was born and thinking something like "Oh, that's too bad for all of those moms and all of those families (I'm going to use your words) over there." Never imagining for a moment it would one day be me. It's a little embarrassing, really, that I was so obtuse.
Thanks for sticking your neck out there and sharing your thoughts and ideas to open the hearts and minds of others.
Amy, I am sitting here in my living room while Mags naps with tears streaming down my face. This is so beautifully written and insightful. Having been a teacher to those with special needs I have a narrow view of what some may never have, but nothing like what you as the mother feel. The "us" vs. "them" mentality is so perfectly worded here. I think you are such an amazing voice for so many and I love what you do and how you parent and who you are. thank you.
Hi, I just discovered your blog via Mara Koefed's blog (I'm in her ward and her friend in Brooklyn). You are an amazing, inspiring woman. I have just spent the past 3 hours reading your blog and learning about your incredible story with Lamp. Thank you for the important work you are doing … as a woman, a wife, a mother, and blogger (sharing your story with such honesty takes guts!) I am so touched and inspired to be a better person.