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Sunday, July 4, 2010

The Blog is Back/Lessons They Don't Teach You

So here goes blogging again. You can still follow Ella Grace's progress and medical updates via her Caring Bridge site at www.caringbridge.org/visit/ellagracemusial

This blog is now completely devoted to being my online journal as the mom of a medically fragile/special needs child. Life with Ella is hectic and stressful, of course, with all of the doctor's appointments, procedures, therapies, etc. But beyond that, we Special Needs Parents (or SNPs as I will refer to us) experience everyday life and society a lot differently. With this blog I hope to bring some insight and awareness to OUR world so that others can develop an understanding and maybe even change their ideas about families like ours by helping to eliminate "the fear of the unknown". So here goes installment number one...

Lessons they don't teach you in school
I'll admit it. Before I became an SNP I was scared of people that were different. I feared them because I didn't know how to act around them or what to say.

But let's give ourselves a little credit: as humans we naturally fear what we don't understand and it's human nature to be curious about anything that is out of the norm for us. It took me a while after Ella Grace was born to figure this out, but that's why people stare!

In the beginning I would get really annoyed with the stares, like it was a personal attack on my child. But eventually I realized that the majority of people aren't meaning to be rude. They're just caught off-guard and are curious about something that is different from what they normally see like...say, maybe a baby with a feeding tube coming out of her nose?! Did I ever see or know what a nasogastric tube was before Ella Grace was born? Not so much. And unless you're in the medical field, chances are you haven't either. And so lesson #1 was learned.

Lesson #2 came shortly after: most people aren't even aware that they are staring (or "boring holes" as we SNPs may describe it on a bad day). And so I realized that offering a quick smile to the starer can be very beneficial to all parties involved by making "the starer" aware of their behavior either prompting them to feel comfortable to make conversation or to go on their merry way.

The bottom line is that regardless of what is going on with our child, they are OUR CHILD and we are proud of them and love them just as much as we would a typical child. We want to talk about our children but find people in general feel it's rude to ask questions. For me personally, this is not true. I am happy to talk about Ella Grace. I'm not embarrassed. I'm not going to be upset that by asking a question you are pointing out that she is different (we tend to learn this pretty early on from the doctors!) so please, ask away.

Yes, it can get tiring repeating things over and over, and we have our "days", but for the most part we are dying to talk about our kids just as much as you are. And the fact that most people are afraid to talk to us can make our world feel very isolated at times.

So the next time you see one of us around, give us a smile and ask a question or make a friendly comment. Something as simple as "How old is she?" or "That sure is a pretty bow!" can make us feel like we are part of "normal" society and open the door for a conversation.

10 comments:

  1. I couldn't have said it better myself! As an SNP, we will never see the world the same again, but we do want to feel like we belong in it. Well said!

    Audri

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  2. Thanks for bravely admitting to your former fear! I can totally relate. I didn't have much experience with SNKs before having one, either. Honestly, I wasn't much of a kid person in general. I wasn't one to coo over other people's children or try to interact. Now I engage easily with all kinds of kids and love talking with other parents.

    Like you, I'm happy to talk about my son, who has an unidentified genetic syndrome. He's pretty obviously different from the the other kids on the playground, and if I can do my part to create more understanding in the world, more awareness of who these very special children really are, I'm glad to do my part.

    Warmly,
    Michelle
    http://griefinterrupted.com

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  3. Ditto! I totally agree that for the most part, people are just curious -- not mean -- and a smile can go a long way. But there are times I just want to be left alone too.

    And I so agree about WANTING to talk about our kids. I wish people would ask more questions sometimes. I want to share.

    Well said! Can't wait to read more!

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  4. I love your post! I too have learned many lessons being SNP. I totally agree with you that most people just need to be informed.

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  5. Excellent post Suzanne!! Being an SNP definitely changes your perspective :-) Look forward to reading more!

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  6. So true Suzanne!! Great post!

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  7. Anna (my daughter) and I were just reading your blog together and we both really enjoyed it. Thanks for sharing your thoughts and keep up the good work. I hope everyone chooses to read this to their children so we can bridge the "fear of the unknown" early in life.

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  8. This is great Suzanne...being "Aunt Jenn"...I too have noticed people looking because they are curious. All I have to say is I'm proud to be a part of Ella's life and feel blessed to witness her unconditional love and endless strength!!!!

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  9. Kay K (Gatorkakes)July 14, 2010 at 10:09 PM

    Loved your posts Suzanne! I often think about Ella Grace and wonder how she is doing, and especially what she is learning, and how she is changing. But, as you mentioned, I have always been afraid to ask. Not any more! Can't wait to read more!

    XOXO

    Kay

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Go ahead, let me know what you think! Also feel free to ask questions or recommend a topic.