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Thursday, August 7, 2014

Addressing Concerns...

For the majority of you that cheer us on, take part in our advocacy and read our blog posts... THANK YOU!  You don't even know how important you all are.  I am working on a new system to help new parents of a little person and to be able to better serve you better but I want you to know... I read every comment, every e-mail, every message.  I am trying to figure out how to respond to them all!  But, it matters and I am always blown away at the time people take to write! You guys are awesome.

For the few of you that have concerns with our advocacy, sharing our story, our blog and everything else in between... perhaps I can shed a little more light into our decisions and you can try my shoes on for a minute (very few of you actually know what it is really like and for my fellow mamas to a little person... you guys are my rocks--love you) and see where I am coming from.

I will say... life is hard.  No one is perfect.  As mamas, I think we are each trying to navigate this craziness of life the best way we know how holding onto our beliefs and praying at the end of the day that we have another day to try it all over again.  My hope is that we can lift each other up and not tear each other down.

With that said, I will also say... kindness is always welcome... we are constantly learning and open to learning over here.  We will take every concern and mull it over with each and revisit our mission and make sure we are spreading kindness, love and awareness in the right ways.  At the end of the day, we make sure that we are in line with our Christian views, helping others and doing what is best for our family.  And sometimes, we can just agree to disagree.

Here are some concerns we would like to address:

Concern #1: What if Lilah reads your blog someday?

Well, I sure hope she does.  My blog is a love story.  I think it demonstrates how worried we were for her, how much we have changed, how much we absolutely and unconditionally love her exactly the way she is.  I hope it will show her that in this family it is ok to be real, to not have to be perfect.  It's ok if we make mistakes, change our point-of-view, learn and grow.  I hope she will learn that in this family we say, "I'm sorry." That we are there for each other.  I hope she is encouraged by all the good that has come from sharing our story.  I hope she see how many people have supported us along the way.

Concern #2: Aren't you worried about giving out Lilah's name and photo?

No.  I am not.  Why not?  Because with that mentality, where do you draw the line?  Do I worry that my kids are going to get hit by a car?  Sure.  Do I worry that they are going to drown in the lake?  Sure.  That doesn't mean I don't let them go outside or swim in the lake.  We choose not to live our life in fear of things that could possibly happen.  Does it mean that I let my kids outside without my supervision or in the lake without life jackets?  No!  Of course, I take precautions but it is because of these precautions that I feel comfortable living my life out loud and on purpose.  We choose to see the good in people... probably because we have witnessed so many strangers that have become friends along the way. Regarding the cards... this is not a propaganda situation... we are not at the street corner passing these out to anyone!  And I understand that they could potentially get into the hands of anyone... but there is no address or phone number attached to the card or any website on the card.  We are giving these cards to people in our community as to learn about their littlest citizen so when these families see her out and about, they can say, "There's Lilah!" We are taking the curiosity out of the situation in hopes that she is loved here for who she is and can be comfortable where she lives.  In doing this, we love that the advocacy is spreading beyond our town and into other states and countries too.  We love sharing the message of love.

Concern #3: You don't owe it to anyone to tell them about your story.  What if your kids hear you talking about it?

I absolutely agree, I don't owe anyone.  But if we all had that attitude, what would our world look like?  Avoiding important discussions and learning opportunities because we don't owe anybody anything?  Personally, because I am a Christian and I do believe that all that has happened in our lives is a direct result of Him and His faithfulness to us, I just can't approach life that way.  It doesn't mean that we are walking around sharing our story to anyone that will listen!  We are sharing our story to those that want to learn more.  You have to understand how many people are touched by her life in just a two-hour time period.  At the zoo last week it was over 30 people.  I have learned how to field questions and when to talk more in depth and when to just say, "Thank you," and move on.  But interaction is positive and kind and our hope is to change perceptions one-by-one.  My children hearing the love behind our story will understand how different is beautiful and we are not ashamed of our story.  They will be able to field questions and lovingly talk to people as well.

Concern #4: Aren't you worried about who your story will reach?

Let me tell you firsthand who our story is reaching... almost everyday someone is reaching out to me because something on the blog was helpful, they themselves are in need of some counseling or they have changed their perception of little people.  AND... one child became diagnosed after the mama thought about how much their child looked like Lilah on Instagram.  These are not little things.  These are BIG-changing-the-world-things.  That is why this advocacy is so important.  Did you know I was once counseling this one mama... and she was so concerned about her son's diagnosis and all she wanted to do was to reverse it?  I talked to her over and over about how to cope but the last thing she said to me was, "I just cannot accept it."  My heart was and still is broken over that.  I want to be there for mamas that need help so they do know everything is going to be ok.  Minds can be changed.  We can not only accept this fate, we can completely love it.

Thank you all again!  XOXO

7 comments:

  1. I just wrote about this very sort of thing--how when you put yourself out there you get good and bad/mean comments. I specifically blogged about the perfect timing of a stranger who stopped me in the grocery store to tell me how Sienna's story inspired her and helped her through something. So, it reminded me that getting those bad comments is worth it because the ones we help FAR outweigh the negatives. Keep it up, Leslie! :)

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  2. Found you through Instagram not to long ago. I'm inspired by your "story".
    We all have different things in our family that make us our own.. Make us who we are. We all have a "story" to tell. I love seeing Liliah's sweet face on Instagram .. I love seeing her just being "normal". She is who she is, and clearly.. Her family is proud of who that is. For someone like myself, who doesn't know anyone like Liliah, I love how you let us peak into her life and let us see she's just like everyone else, just on a smaller scale. She is beautiful, and so is her story. Thank you for sharing .

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  3. I would like to let you know that, myself being on the "grown-up" side of Lilah's journey, I think it's wonderful. My parents did the best they could raising an LP in a small town, back in the day when there were no blogs, FB, Instagram, or even Internet. My mom was honest about the difficulties and was a great advocate and role model for me in terms of being open with curious strangers. It's made me the advocate I am today. Yes, there were times (mostly during puberty and freshman year of college) when I preferred to pretend I was average, but now I see myself as the embodiment of my potential. My parents taught me that questions were an opportunity for change, and I'm glad you are teaching that to Lilah. No, it doesn't always feel good to be a spokesperson, but I do it because it does make a difference, every time. I met you because you came up to me in the mall to introduce me to your kids, and they met my service dog Max! You were so up front and yet courteous, it was refreshing. No, we don't all know each other, and we don't all know Peter Dinklage, but it's nice to meet each other. I hope to get to know Lilah better and to be some sort of role model in my own way. It's not easy being open and "out there", but I honestly think that my parents' (and your) way of handling the tough (yes, it's tough) task of raising an LP is encouraging. I don't think I would have had the courage to get a PhD and become a professor if I weren't comfortable with the waves I make just being me. I'm not a mama, but I'm a role model for everyone of my students, or at least I strive to be. Thanks for your thoughtful posts, as always.

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  4. I guess I don't understand why people would bother you with concerns. Personally, I follow Lilah and little Floyd over in Austrailia on IG and love to read about them. I do not have a child with Lilah's diagnosis, but it doesn't mean people like me don't care. I love learning more about it. You are a strong mom, and that is what I like most about it. I struggle daily as a mom of a 14 month old and your blog simply gives me hope as a mom. We all have trials and obstacles in life. No ones path is the same. Showing your strength and love for your entire family like you do seems to help me through mine. Keep it up girl. Give Miss L a big squeeze. Thanks!

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  5. After reading this last post I realized I never said thank you. I am not one to reach out and talk to people when I need help/support. Your blog has given me courage, strength, and hope for the future with my 1 year old achon daughter. If it means anything, I feel like you are making your story public and Lilah is a huge part of that, but Lilah's thoughts and feelings are her own to share later if she wishes. So people should relax.

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  6. thanks for being honest in your well written answers!

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  7. I just love what you're doing and your daughter is beautiful! I'm a special needs parent myself - my daughter is 4 and has Peter's Anomaly (congenital eye disorder) and hydrocephalus with resulting CP. My close friend who's 7 mos pregnant also just found out her baby has SD. I'm doing my best to support her but am happy I can direct her to this website for comfort. Us moms have to band together and make our mess our message :). Our story is at averys-light.blogspot.com if you get a chance!

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