Thursday, January 29, 2015

Would I Still Do It?




I posted this picture on IG the other day with the following caption:

I am brave because I keep sharing even though I'm not sure it's making a difference.  I am brave because I strive to meet stares, uncomfortable situations and rude comments with kindness and understanding, and I try to teach my kids to do the same as well.  Oh how it would be so much easier to label every outsider as ignorant and offensive, but in my heart of hearts I don't believe it's true.  Finally, I am brave because I'm learning that vulnerability is the mark of a strong heart.

I was tagged by a couple of friends and asked to complete the sentence I am brave because... for the We Brave Women project.  In regards to the first sentence, many people commented telling me how I've made a difference in sharing my story and the stories of others, referencing the special needs spotlight and other special needs posts. I was so grateful for everyone who commented to tell me that I have and am making a difference. As much as I needed and wanted to hear that, I quickly wish that I had reworded my post saying instead '...I keep sharing even though I'm not sure it's making a big difference.'  The truth is I know I've made a difference to many people, you've emailed me, you've commented on posts both on the blog and Instagram.  I've even had a couple really special stories directly related to the spotlight that I always look back on to remind myself that yes, this little blog has made a difference.

So I sat there feeling bad about what I said, one because it came off like I was fishing (which I was) and two, I didn't want people to think I didn't appreciate their stories, their sincere thanks and gratitude.  Still I couldn't help shake the feeling that I hadn't made a BIG difference.

A BIG difference.

BIG.

Bingo. That was it.

My blog has not reached the height and popularity I would have hoped for by now.  My Instagram followers are also small in comparison.  And while we're at it neither Oprah or Ellen has ever reached out to me to commend my work. What? While I didn't start doing the special needs spotlight to propel me to fame or recognition, I have definitely hoped my work would spread further than it has.  Because it is work.  Humbling, beautiful, and sometimes holy work, but work nonetheless.

Then in the back of my mind came a question:  What if your reach always stays small?  What if your sphere of influence never grows much larger than where it is now...would you still do it?  Would it be worth it?  

*****
A few weeks ago I was flipping through channels on a Sunday morning.  Not something I often do since I'm usually at church, but being home sick I channel surfed.  Serendipitously I came across Oprah interviewing Timothy Shriver.  Who is Timothy Shriver? Well besides being the brother of Maria and the son of Eunice, he is also the current Chairman of the Special Olympics.  Perhaps you know that the Shriver family is part of the Kennedy clan, the closest thing us Americans have to royalty and that Tim's mother Eunice (sister to President John F. Kennedy) started the Special Olympics.  I don't know much about Eunice Shriver, but knowing that this woman who was born to wealth and privilege, turned her interests to one of the most marginalized groups in the world--people with intellectual disabilities--and started the Special Olympics in the 1960's (no less!), a time when, as her son points out, institutions for the intellectually disabled were still growing...well, she inspires and amazes me.

As luck would have it, I caught the interview with Tim early on and was able to record most of it.  Today, I went back to watch and remember some of what Tim said and found myself nodding along with tears welling in my eyes.  Oprah asks him, "What is it about special olympians? Why is it that going into that space for some people makes them so uncomfortable?"

His answer, "Well I think we're all afraid.  Think about who these people are.  They're not smart, by traditional definitions.  They're not rich by traditional definitions.  They're not pretty by traditional definitions.  They're not successful.  They sometimes look sick by traditional definitions.  They're all the things we don't want, that we're afraid of... Nobody wakes up in the morning saying I wish that for anybody.  So a lot of people go, 'Well I'm sorry that happened to you.'  You know one mother told me [that] she has 3 sons. Two work at big investment banks and the other has a severe intellectual disability.  She told me, 'Overtime people ask me about my sons and I tell them about my oldest who's in New York and I tell them about the second one who's in Chicago and then I tell them about Christoff who's at home, who I have to get out of bed every morning. And they always say to me, 'I'm sorry.''  And she said to me, 'Tim your life work is to tell them to stop saying that about my son. That boy is the light of my life and everyone thinks I should be afraid, that I should be sorry that I had this boy.  And he is magic.' 

Tim goes on to say, "If you have a baby what's the first thing you ask a doctor, 'Is the baby ok?'  Sometimes the doctor says 'No, baby's not ok.' And your world comes crashing in you know... like what is this child?  This child is not healthy, this child is not going to be whoever everyone thinks he should be... It's terrifying.  And yet we all feel that.  So we come to these games expecting to be sad, expecting to feel pity...And I always want to say... that pity, that fear that embodies that 'I'm healthy and they're not' I think there's a strength in vulnerability that only vulnerability knows.  You know I think in some ways the whole Special Olympics gamble is, Is there power in vulnerability and trust?  And I think the answer of our athletes is, There is only power in vulnerability and trust.  

I grew up [with everybody] in the spotlight...thats' where we all wanted to get to.  That's where you'd be successful.  And what I saw was that sometimes when the lights are the brightest, people feel the most invisible. I think sometimes where you think you want to go, is not the place where you will find your heartfelt, most meaningful, most purposeful life.  I looked around thinking I wanted to be like all those people in lights, and I found myself happiest in places nobody wanted to be."

 *****
The answer to my question came quickly.

Yes I would still do it and yes it is still worth it.  

There are definitely times I have wanted to quit the special needs spotlight (and sometimes blogging in general) or drastically scale back. And every time that desire hits I get an email or sometimes a phone call or in person conversation where someone tells me how much they love what I'm doing--especially the spotlight--and I get this little nudge to keep going. And so I do. While I'm by no means the only one blogging about special needs and in fact there are a couple of very well know special needs bloggers, in general it's not a glamorous topic.  I've even been told by some people that they find the spotlights sad and depressing.  Of course all the more reason to keep sharing, because I also see my work as removing the fears and stigma surrounding disabilities. I will always continue to blog about art, tutorials, and my family as well, but when it comes to my blog I have found myself, like Tim, happiest blogging about things nobody wants to blog about.

Up until now I always thought I was to keep going because at some point my blog would get a big break, a tipping point.  For the first time I'm realizing... maybe not.  I mean, maybe... but maybe not.  Maybe there is no big break, maybe this is as big as this little blog gets. Like so many people I have found myself wanting to do something great, wanting to make a big difference and have a measurable impact. Thankfully there are those throughout history who stand out as our great leaders, entertainers and policy makers. They are the people we build monuments to and write books about. But just as important, are the billions of humans who have moved along quietly doing the small and unremarkable work of everyday life that on it's own goes unnoticed, but all together is responsible for pushing open the doors on which the hinges of humanity hang.  Mothering, fathering, teaching, feeding, nurturing... what good are the queen bee's if we have no workers? And so when I wrote my I am brave statement a couple days ago I said it with the understanding that I knew I was making a small difference, but when was I going to make a big difference?  Some of is is selfishly motivated, but some of it is the fact that work just seems easier when there are big rewards attached. So now I find myself embracing a new sort of bravery.  A bravery that asks are you willing to do the work your doing now even if it remains a drop in the bucket in terms of making a difference? It's funny that I had never contemplated that before, but really I hadn't.  Again, the liberating answer was yes.

And now instead of expectations attached to the first sentence of my brave statement, I will simply say, I am brave because I will keep sharing.
Period.


Thanks to everyone who has ever let me know they read, love, support and have ever been impacted by this little blog.  It means so much to me. Gosh I hope this post came off right... anyone else ever struggle with this desire to do big things but a realization that perhaps the small, quiet things are actually more important, and may even be where your heart and happiness lie? Also, what did you think about those powerful words from Tim Shriver? You can see snippets from the interview here.  

23 comments:

  1. MIggy, I have enjoyed reading your blog for a long time. I even told a special needs mom about it and you profiled her son! I am always curious about how families deal with adversity. I think it helps me be a better pediatric home care RN. Please keep writing!

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    1. Thanks Cathy! I love when people share the blog with other special needs families...it always helps to know you're not alone.

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  2. Anonymous4:13 PM

    I've been reading your blog for a long time, and I absolutely love it. And now I feel bad for never commenting before! I don't know how many other people might be following without posting, but I'm sure you have a much bigger readership than you think.

    The Special Needs Spotlights are really incredible. It's so interesting to see how much all special needs families have in common, even though they may have vastly different issues. I really related to the story you shared from the Tim Shriver interview. I've found that when I mention that my son has Asperger's, people almost always give me a sad/pitying look, coupled with an "Oh, I'm sorry." I end up feeling either confused or annoyed; why would they be sorry? My son is awesome. He has his challenges, but so does everyone, and he's a great kid. He just would not be who he is, and he wouldn't do some of the hilarious/amazing things that he does, without it. I didn't get to this place overnight, but I can honestly say that I wouldn't change it if I could, so why do people think it's such a bad thing?

    I think it's important for people to know that we special needs parents love our kids exactly the way they are, just like everyone else does with their kids. You do an incredible job of spreading that message. I've learned so much from your blog, both about your beautiful family and about so many others. So, thank you for sharing your and others' stories, and please know that you've had a huge impact on this reader, and I'm sure many others.

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    1. Anon--Well these days with site tracking you can actually have a very good idea about readership. And honestly, I do have a decent readership. And I am very grateful for ANYONE who takes the time to read, share or consume this blog on any level. Blog reader in general has fallen significantly and I know I too have scaled back on the number of blogs I read...so really, I do appreciate it and am grateful for each one of you. And honestly, there is a part of me that wonders, "Would I really want this to become a full time career?" No. I would love a little more reach, a little more compensation and some cool opportunities, but it's also nice having the freedom to feel I can do whatever I want to with this space.

      And yes we do love our kiddos just the way they are. I think the more visibility we see of the disabled--in media, in our schools, etc--the less stigma and fear people will have.

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  3. At the risk of being an over-commenting (annoying) reader, I've scaled back my comments on your blog. Today, though, I must comment! :)

    Like you, I felt this drive to begin writing a public blog—I was given a very strong spiritual prompting to do it. Because that prompting wouldn't leave me alone, I wondered who I was supposed to reach?? I was disappointed when my blog didn't take-off, either.

    But it's been super interesting to see that, over time, my blog posts have come in SO handy when I've needed to share thoughts with my little family, extended family members, and friends. Instead of taking the time to write out lengthy responses to their spiritual/life questions/problems, I've been able to email links to my blog posts, and share other thoughts as they come to me.

    I also look at my blog as a family history tool. My posterity will never have to wonder what type of woman I was, for it will be clearly available online forever! Or, until Google takes it away. Ha ha. I'll probably print a book of my blog one day, and that thought makes me smile! :)

    Long story short, I'm grateful you're blogging. I really wish you could have made it "big" by now because I feel you have so many wonderful insights to share with the world, yet like you said, you ARE making a difference to somebody. And that's how I view my small little blog, too. :)

    I know I could be blogging about things that would generate more "hits", and I could change my adsense preferences/categories to make more money (I'm still at $1.47! Ha ha.), but I stay true to who I am—I'm not one of those bloggers who can be "bought". I'm truly so happy I can sleep at night because of my choices.

    I still have a feeling you're going to gain a larger readership, but until that happens, just know that many people are reading what you're writing. I'm certain that one day, your daughters will read your blog and be utterly AMAZED at the wonderful woman they were blessed to have as their mother!

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    1. Thanks for your continued support Adrie! :)

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  4. Happy8:31 PM

    I just wanted to say thank you for your blog. I read regularly but have never commented. I am a parent to a 'typical' child. Your blog helps me a be a better parent to my child and a better person. I can't remember how I ended up here but I am so glad I did.

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    1. Happy--great name.

      Thank you so much!

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  5. I am a pediatric resident at CCHMC, and have read your blog for probably 4 years. I am not a big commenter. But I have found your special needs spotlights so enlightening and helpful. As a medical student, I remember being just crushed when the first patient I met (in a PICU) returned to the PICU 2 years later...and then died. Here was this human, and all I knew of her was the time she spent in an ICU on the verge of death, and that part of her life, the part in intensive care, was just awful. I felt so angry that that was the life she was dealt. Then one day, someone had the kindness to point out the photos on the wall in this little girl's unit--playing with her siblings, dressed up in fancy clothes for special occasions, running around in nature. Like any other child. It sounds ridiculous, but I had no idea that she had this other life, rich with family, joy, the outdoors, and many many meaningful experiences, in between her acute illnesses. I think not everyone has frequent experiences in every day life with someone who does have complex medical needs--or atypical physical features, or other differences that we may not understand in depth from the perspective of a friend, or family member. And I have found your blog so helpful in that you give us that perspective--not just your own, but the perspective of so many others. You show the joy, the richness of experience, the beauty. And it is fantastic.

    I haven't shared your blog before, but I will on social media the next time you post a Friday highlight. :)

    PS--I saw you recently out and about, but did not introduce myself, because I felt like a stalker. Next time I'll say hi (sorry).

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    1. What? Next time you see me (us?) say hi! It's always fun meeting readers. And I am SO happy to hear a resident reading the spotlight. And thanks for sharing that story...yes in-between the hard, sad and painful is a beautiful happy child. Sometimes that gets lost between conditions, therapy, diagnosis, etc.

      Thanks again for the support!

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  6. Anonymous10:46 PM

    Dear Miggy,
    I want you to know that if you're making a small difference, you're definitely making a big difference! Every person who reads your blog (whether one, or one million) is learning how people with disabilities are people, not less than 'normal' people, just different. If only one person learned that lesson, that's still a big difference!
    Sending love and hugs from Australia xoxo
    P.S. LOVE LOVE LOVE the spotlights

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  7. Anonymous10:46 PM

    I have been reading your blog for a while, never commented. Thank you for writing. I don't have a special needs person in my life, however, I really appreciate your spotlights. I now understand better. Thank you for writing about your family, also, and sharing your life with me.

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  8. Christine2:41 PM

    Miggy, I have been reading your blog for years and love hearing about your family. Keep sharing!

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  9. i love reading this blog. please keep going!

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  10. Anonymous5:39 PM

    Thanks for sharing. The spotlights are so informative!!

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  11. What you're saying is completely true. I know that everybody must say the same thing, but I just think that you put it in a way that everyone can understand. I'm sure you'll reach so many people with what you've got to say.

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  12. I love reading your blog. I'm a teacher and it helps me to be more sensitive and more empathetic toward all of my students. I like the things you share, like the little rhyme that guides what you buy for your children on Christmas morning. I wish I had known that one when my kids were little. I find inspiration in your blog. Lamp teaches me that I can do hard things. PSP reminds me that we can be good people, really good people, even when life doesn't seem fair. And well, that baby ZuZu, just keep posting the pictures please. I like your simple decorating style and I love that you love God. Keep writing.

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  13. I don't remember how I found your blog, but I have been reading it for quite some time and I am embarrassed that I have never commented... Your special needs spotlight has really caused me to think about my interactions with kids with specials needs and their parents. I teach 4th-8th grade music and I love how inclusive music can be, your blog has shown me how important this really is. I used to be the kind of person who would avoid eye contact to be sure that no one thought I was staring, where as now, I will smile and say hi to a child who catches my eye. First hand accounts are so important when dealing with kids and their loving parents. You are doing a great job and even if your reach is not as far as you had hoped, it's still making a difference.

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  14. Abigail10:35 PM

    Your blogs is one of the very few that I will actually return to finish when interrupted. You write such worthwhile things, I always feel nourished. Thank you.

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  15. I read your blog and comment. Although my special needs child now is an adult. His disabilities are much different that the ones you interviews. Whatever anyone can do to help with compassion and understanding is helpful. I hope that you will continue your interviews and sharing your girls. Thanks.

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  16. Anonymous5:19 AM

    Kia ora from New Zealand. Thank you for your honesty and for sharing your three beautiful and spirited daughters - and your home - with the world. Your reach and influence are wider than you may ever know!

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  17. Anonymous3:40 PM

    You have such a way with words. I am very grateful for your blog and I read it frequently. Your voice matters.

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