Monday, February 24, 2014

Escaping and Protecting

I stopped to talk to her for one minute. Two- max.

We were walking into church as a family- rather, bumbling into church while holding flailing limbs of little people and carrying a heavy infant seat while looking shell shocked and harried (a by product of simply getting out the door these days, I'm afraid).

Aaron was walking up ahead with Carter, and Addison was walking next to me while I carried Eli. When I stopped to talk to my friend- there was a clear, short path up ahead to the nursery where Addison has gone so many times before. Plus- Aaron was right there and no doubt she would catch up to them in the one minute that I stopped. Nothing to worry about- or so I thought as I stood still for a minute letting Addison continue without me.

Except when I went ahead to the nursery area, I didn't see her anywhere. I asked Aaron- is Addison with you? Nope. I asked a friend- have you seen Addison back by any of the nurseries? Nope.

Since the nursery area was a dead end, the only other place she could have gone was up the very large staircase that led up into "big" church. It had only been a minute, so I figured I would catch her halfway up the stairs.

Leaving Eli by the nursery with Aaron, I went running up the stairs. Even in a safe environment surrounded by wonderful people- it made me panicked to not know exactly where she was. I ran up the entire flight of stairs- no Addison. The friend I saw on the stairs hadn't seen Addison. I ran into the fellowship room right outside of "big" church- no Addison.

But then I noticed something rather interesting. There was a pathway of people standing and chuckling- with giant smiles on their faces. When they saw me in hot pursuit, they all pointed the same direction. I followed the path of pointing fingers, until I was in the sanctuary, and I saw her.

Walking confidently, head held high, holding her hat under her arm, perusing the path ahead of her- she was looking for a seat. She was halfway through the auditorium- her little legs pumping so quickly they were almost a blur.

You know that you are a parent of a special needs parent when you are simultaneously horrified and yet incredibly proud by the same incident.

I was horrified that she had disappeared so successfully. And yet- I was proud.

I was proud of how quickly she climbed those stairs all by herself. I was proud of how tall and confidently she marched all on her own amidst a sea of people. I was proud of her independent spirit. I was proud of her desire to be a part of "big" church. I was proud of all the skills that she worked so hard for and had to put into that "escape".

And yet- I was horrified that I had lost her and what this same escape would mean in a much less safe environment.

Yesterday I was pondering on this incident all the while pondering why I blog-because of a picture of Addison was used without my permission on someone else's facebook page. Why do I blog? Why do I put pictures of my kids out into the big, bad internet where complete control is a thing of the past? Why do I pour out my heart into a post that might more comfortably fit into a journal entry under lock and key? Why blog- publicly?

And yet as I thought about this incident- the first thing I wanted to do was to share it with all of you. Because you get it. You have watched Addison go from an incredibly sick infant to a confident 4 year old tearing down the church aisle all on her own. You have read how I loathed Down syndrome and grieved for her entire pregnancy to then fall deeply and helplessly in love with my daughter and her diagnosis. You have seen the pictures of her with a nasal cannula to the pictures of her enjoying life and laughing hysterically with pink cheeks free of tape. You have been with us every step of this journey, and while I struggle with the line of protecting my daughter vs sharing my daughter- I always come to the same conclusion.

When I find out about Addison's diagnosis- I read articles until I was blue in the face about Down syndrome, but I needed to SEE it. I needed to read a mother's account. I needed to hear that someone else had felt similarly, and yet had an amazingly experience once they were in it. I needed to feel the heart of what this life was truly like.

And that's why I blog. I blog, I share, and I put this all out there because I feel that Down syndrome is grossly misrepresented in vague stereotypes and clinical medical terms resulting in a high abortion rate when this diagnosis is received. I want to help a small portion of the world SEE Down syndrome. To feel the unique combination of joy and frustration. To experience the happiness of a milestone conquered- the excitement of exploring an unexpected path. To realize the normalcy of life even after such a diagnosis. To keep a kind perspective on others not like themselves. To be reminded that a person is a person no matter how she is diagnosed.

Maybe someday things will happen to cause me to go private, but for now- here we are.

Could you do me a favor? I don't mind if you share my blog posts- in fact, I love it when you do. But if you ever see a picture of Addison floating around that doesn't seem to be coming from us here on the blog- could you please let me know? If you ever feel the need to use one of Addison's pictures for something- could you email and ask me first?

Yesterday when friends told me of Addison's picture being used somewhere else, I was able to contact the page owner who very graciously took the picture down when she learned that I was not OK with  my daughter's picture being used on her page for page "likes". Crisis averted- for now.

If you have noticed, I have shared fewer pictures here on the blog than ever before- putting more writing in place of them. Just trying to balance things out. Also- from here on out I will be more faithful with my watermarking. I don't always have the extra time for this, but today I realized I need to make the time.

It is getting harder and harder to protect our kids online, and I do struggle with the pros and cons of this, but for today?

I think about Addison escaping in church, I picture the looks on your faces when you read her of her shenanigans, and I see how you are proud and horrified too. Because we have come a long way- together.

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