Monday, January 25, 2010

How am I supposed to answer that?

Last night when I dropped Emily off at the church nursery a little girl asked me: "why can't she walk?". The question caught me off guard and I really didn't know how to answer. One, I would answer a child much differently than I would answer an adult. Two, there wasn't a lot of time for a lengthy answer. She was genuinely curious and I wanted to answer her question. I eventually said something like "her muscles don't work the same as yours so she has to work a LOT harder to do things". She seemed satisfied with the response, but I wasn't.

Today I had a doctor's appointment - just a checkup, no big deal. I showed her pictures of Emily and she asked how she was doing. She asked if she was crawling, if she was communicating and a bunch of other questions about her development. When asked questions like this, I feel like I have no choice but to list all the things that Emily is not doing. All the while, the doctor had this look of pity on her face and I just felt awful.

This afternoon, I was talking to a coworker over the phone. She asked how Emily was doing. She asked if she was walking and talking and doing all kinds of other things. Again, I listed the things that Emily is not doing. She also asked if anyone tells me if she will ever be able to do those things. Thankfully, no. No doctors or therapists have tried to paint a picture of Emily's future and I am glad. They cannot see into the future so I really don't want to hear what they think will be. I am content to let the future remain unknown. I am content to let Emily show us what she is capable of in her own time and in her own way.

These encounters really got me thinking. How am I supposed to respond when people ask questions about Emily and what she can and cannot do? I don't want to paint a grim picture, but I don't want to lie about Emily's abilities. I also don't want pity or sympathy from people. I don't feel bad about Emily's condition and neither does she. This is our life and we are OK with that because we don't know any different. I know deep in my heart that Emily doesn't have CP because of human error. I didn't do something during my pregnancy that caused it. A doctor didn't make a mistake somewhere along the way. CP was part of God's plan for her (and for us). Emily is exactly the way that God intended her to be.

I need to be better prepared for the questions that people have. Emily will be getting a wheelchair at some point (hopefully soon) and I know the questions will only increase. I realize that I do not have to offer a detailed explanation to everyone I meet, but I also don't want to elicit pity.


Stephanie's Mommy Brain said...

Sounds like some more of those 'reality checks' we've talked about. Thank you for sharing your thoughts and heart.

As my kids have asked about Emily, I've explained things this way: Her brain doesn't work like other people's brains work. Because of that her brain has a hard time telling her arms and legs to move.

By the way, my kids LOVE looking at pictures of Emily. :)

Mo said...

Good points...

I am better at fielding questions after the fact but I have gotten better at them head on. You may not feel like it, but you are doing a fantastic job and above all, as you know, Emily IS perfect.

Anonymous said...

I think your attitude will come across no matter what words you use. That is the start for people to understand. Many people understand what CP means if you want to use that term.

You could throw-in what she can do - "She tells us when she is happy or upset."

Agreeing with Both comments above.

anika said...

new to your blog.. and i simply loved this post. you may have a regular reader here :)

I think you've captured something so essential... that as mothers... as persons struggling with life, we don't by our NEW nature in Christ want to focus on the expectations of the world... we don't want to focus on the list of "i can't's" or "she can't" do this or that yet.. those are so blaringly obvious to us.. we face those things Each and EVERY day..
we want to talk about the things our child IS doing... about the little triumphs... no matter how silly or how small... because our KING whose spirit dwells with in us, is the Victor! :)

Be encouraged... you are doing good, you are a faithful servant... focus on the "can's" the little victories! :) and always (as I am certain after skimming your blog that you are) remember to keep your eyes fixed on the Author and Perfector...
and those "can't"s.. won't seem important... or big...

you are loved!
- just a sister in Christ
who was encouraged by YOU!!!!!!!!!!!

Territory Mom said...

I'm the worst at answering questions from people so I can't give any advice on it. You are doing a great job. Follow your heart. Emily is so blessed to have you and you her.

Jenkins said...

OH those questions are sometimes hard to answer.

However, I do welcome questions, I much prefer that than people feeling awkward, pity or just staring at us.

Then it gives me a chance to let them know that we are ok and that in their own imperfect way, they are just perfect.

Besides, Emily just has to flash that beautiful smile to know that she is great! And such a gift!

Big brother, Little sister. said...

Dawn, I think this is just the start of this stage of exposing Emily to the outside world more and more and educating people who come in contact with your beautiful daughter. YOu are so right in that your repsonse will change and develop depending on who you talk to and how you are feeling at the time.
I have heaps of responses but it still hits me hard when people ask! Over time you seem to change from what they cannot do to what they can and who they are. Lilke anything it just takes time to get use to and expert at it! lol
love to the beautiful EMily xo

Melissa & James said...

Praying for you Dawn, Mike & Emily. This is Melissa - I had several classes with Mike at SBTS but this is my first comment on a post. I was born with sacral a-genesis and walk with a pretty profound limp as a result. Even at 31 years of age, it is hard when people ask questions. Often my old nature creeps up and I just wanna say something smart alec, but sometimes by God's grace I am able to answer quickly and not be offended. The cool thing is that now as an adult and a believer I have been able to use it to share my testimony of faith in Christ, though often I am annoyed and just say "I was born that way". I know my mom and dad (especially since they were not believers) struggled with the same thing when I was little and it was hard for them. I'm praying for you guys - God will give you the words to say.

Katy said...

I think this is one of the central challenges of being a special needs parent. I wish I had a perfect answer, but I don't.

My husband tells anyone who asks about Charlie, "he's a very happy boy" and leave it at that. Sometimes I think he's not saying enough--sometimes I think he's got the right idea.

Kristina said...

Emma has a sister who is 4 and asks these same questions, so I am better at answering them from outsiders since Julia already has asked them of me! However, I find that Julia sees things from such a great viewpoint. She usually says...hmmm, well that's ok that Emma doesn't crawl but she will some day. She doesn't seem to care when that some day is. So, when I meet kids and they ask (it's usually about her cochlear implants since they have a flashing light and all kids are drawn to it!) I usually say something like Emma is so cool that she gets to hear through special ears and they like that and want to know why they can't have special ears - LOL! When it comes to walking and such, I usually just say that Emma's brain has a boo-boo and she needs a little extra time to figure it all out but she loves when other children roll her around and then - off they go rolling her around since kids think that's the coolest thing, too. Actually, I think kids think Emma is pretty cool just the way she is which is the biggest difference from adults!

For adults I try and guide the discussion before all the questions - the questions jut make me and the asker feel ackward. When asked about Emma, I usually say she has the most infectuous smile that draws people to her which is good since she isn't mobile yet and laugh. People usually get the hint by then.

Coming up with a few responses ahead of time to frame the encounters have helped me a lot, but I do still get caught off guard. I think that'll happen, but in my heart I know Emma is listening to my response and I want to frame the situation in a positive light to keep up her self-image....after all, she thinks she ROCKS and she does!