Thursday, March 07, 2013

Blessings From the Spotlight



So a couple weeks ago I got the following email from Miriam.  You may remember Miriam (or Mim) and her daughter Harper from this special needs spotlight.

Hey Miggy, 
I just wanted to thank you and let you know what a blessing guest posting about Harper has been for us.  Several months ago (middle of December I think) I had someone email me and mention one of the pictures I had put into Harper's guest post on your blog.  I wanted to look at it again, and although it's of course on my computer somewhere, I went over to your blog because it was the quickest way to see it.  After looking at the photo I noticed there were a few comments on the post that I hadn't read, and the last one, written by Elliesee, had mentioned Cornelia de Lange Syndrom as a possibility for Harper's undiagnosed condition. I have had several emails or comments from people suggesting diagnosis, so I didn't take it too seriously at first.  But once I looked up the syndrome and the list of characteristics and then the pictures,  I was completely stunned.  I knew that that was it.  Several months and doctors later (we found out that she also has a vascular ring and will need surgery soon), we met with the geneticist yesterday, and he was able to confirm the diagnosis for us.  We are so grateful to finally know and have a better idea of Harper's future, and although it was difficult at first for me, I feel very peaceful about it now, and am excited to get into contact with other families with CdLs.  I wish I could contact Elliesee to say thank you, but I wanted to thank you as well for helping to facilitate all this.  Thank you!
Hope you're well and happy,
x Miriam


Wow.  I was completely blown away when I read that.  I couldn't believe that my little blog played a part in helping Harper and her family find her diagnosis.  And what an interesting chain of events that led to this discovery right?  For some people a diagnosis isn't that big of a deal--in Lamp's case, it was kinda exciting since I found it, but it wasn't really important as far as giving us direction or her care or future possibilies.  But for other people a diagnosis is key in getting the right care, for shaping expectations and for finding other families who can help you down the path.  In Harper's case, this is really wonderful information.  Also, I know Miriam would love to connect with Elliesee.   So please Elliesee if you're reading comment, email or something!  We'd love to hear from you!

A few days after this expereince I received a phone call from a friend in Cincinnati.  She has been teaching classes at her kids' school that are a monthly forum type class that cover a range of topics.  Last month the topic was acceptance.  She called to tell me that she used my blog to teach these children about kids with special needs.  She talked about how she knew Lamp and loved her!  She showed several pictures of other children from the Special Needs Spotlight and talked about their differences and their similarities.  Since these children are in 2nd and 3rd grade they have limited experience with special needs kids.  My friend, who is a teacher by profession, told me this was the best class she's ever taught.  She said you could hear a pin drop it was so quiet with their attentiveness.  She said at the beginning of the class one girl said, I don't like kids who look like that but by the end of the class this little girl was holding her hands over her heart.  She said that parents came up to her the next day and talked about the wonderful information their children shared with them about children who are different.  She said that the children watched a video of Lamp stacking blocks and then spontaneously burst into applause when she accomplished her amazing feat.  She said she felt the spirit and that it was a wonderful experience and she encouraged me to 'keep on going.'

I was crying on the other end of that conversation.

I have to admit there have been times I've considered quitting the spotlight.  Or at least cutting back a bit.  It's a lot of work.  Sometimes my enthusiasm wanes and I wonder if it's making a difference and if people really read it...

And then I get an email and a phone call and in very real tangible ways, I know it's made a difference.  And I feel rejuvenated and excited for the spotlight all over again and I know that it was meant to be.  This spotlight, even if only read by a small group of people, is making a difference.  Maybe just a small difference, but that's all I need to know.


*****

*Don't know why the font is acting so crazy down here...trying to fix it!

Lincoln was one of my very first spotlights back in October of 2011.  Lincoln passed away about 6 months later, suddenly and without warning, in his sleep.  It's been almost a year since his passing and to commemorate his life and the joy he was to those around him his family is dedicating March 17th--Lincoln's birthday--as Pinwheel Day.  

Pinwheel Day is about making someone’s heart spin, eyes twinkle, and day burst with joy. Lincoln loved to spin things so let’s spin hearts on Pinwheel Day! Then mark Pinwheel Day by placing a pinwheel in your yard, garden, car, hair or lapel and watch your pinwheel spin and think of Lincoln. Then start spinning hearts again! 

Share your picture of where you put a pinwheel and what you did to spinhearts on Pinwheel Day. Then invite all your friends, family, neighbors and strangers to join Pinwheel Day to spin more hearts. Let’s show the Hartleys how many hearts we can spin in honor Lincoln!

Ways to spin hearts can be as easy as longer hugs, extra kisses, more time playing with little ones, kind words, a phone call to say “I love you!”, being bright and cheery, smiling from ear to ear all day, making others smile from ear to ear, doing kind deeds, being gentle, helping others. Be creative! Make Pinwheel Day full of hearts spinning then bursting with love, happiness and joy.


What a beautiful way to remember Lincoln.  Feel free to check out more on the Pinwheel Day FB page here or on Joie's blog here.  
  

28 comments:

  1. I love your blog and I look forward to the spotlight every week! That photo of Harper is so precious. I think every parent can look at it and see their own infant. Hearing the personal stories in your spotlights reinforces the fact that they're all just kids who deserve to be happy and loved.

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  2. Anonymous8:05 AM

    You are making a difference.

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  3. Big difference. For me, a prospective mom, the idea of having a child with special needs was absolutely the most terrifying aspect of getting pregnant. My anxiety has been washed away.

    Not only that but I tell everyone about this series. I learn something every time I read. This blog, in conjunction with some other things, has created an advocate in me. The kind that stops people if they use the "R" word or explains to kids how others can be different. Who knows some best practices when before I was just fearful and embarrassed I might say the wrong thing.

    Thank you so much for the blog -- and even if you stop, know that it this has been such a resource for me. I would still love a "how to approach my child" redux -- if you ever have time for it. Thank you again.

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  4. I love the spotlight! It's one of the main reasons why I read this blog!

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  5. I love the spotlights, and it's so amazing how Heavenly Father is using them.

    My prayers go to Lincoln and his family. My mommmy heart is all welled up and tears are streaming just thinking about him and others who face similar challenges.

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    1. You are making a HUGE difference, Miggy!! :) I look forward each Friday to come and read your spotlights. I do not have a special needs child of my own, but I feel so connected to these families in the strangest of ways - good ways!! I have sent so many people to read your blog. The other day I received an email from someone who read my blog post about my daughter starting kindergarten this fall. She told me that she recently had to pull her child from kindergarten because he had developed a form of autism and was unable to partake in a regular classroom setting. I feel a little bit awkward in how to respond to something like this, but I have learned so much on 'how to approach a special needs child or family' from your spotlights, that I was able to carefully choose my words in my response. I also recommended your blog as an outlet for her to learn more and connect with other families in her similar situation. She emailed me back and was overjoyed to have found your blog and spent the whole day reading through your spotlights. So, THANK YOU for all you do and I hope you continue to highlight such beautiful children and their families.

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  6. I can't remember how I found your blog, but reading about Lamp and the Special Needs Spotlight are my absolute favorite parts. I often find myself emailing posts to friends. I think so many of the inappropriate reactions to people with special needs are not so much ugliness as they are a lack of knowledge and exposure. Let's not whisper about it.

    What you're doing here is wonderful and I think the work you put into it is fruitful.

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  7. I love the Friday spotlight posts! I've read every single one but just need to be better at commenting so you know we're out here reading! Keep it up, you are making a difference. I also show your blog to my kids 7, 5, and 3 years old and talk to them about kids who have special needs and how we love and accept everyone as they are. They LOVE when you post videos of Lamp stacking blocks, scooting down stairs, etc. and ask me to play them over and over. We feel honored to "know" you and your family and get to know other special families :)

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  8. Proud of you, Migs! xo

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  9. You just never know how the stars will align or someone else is an answer to a prayer. Thanks for all you do.

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  10. My kids have no interaction with special needs kids in their day-to-day lives, but I want tyo teach them about differences and sensitivity before they have an interaction that causes someone to be hurt or uncomfortable. Your blog has been an important tool in teaching them. They love Lamp and all the children you have shared with us!

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  11. Wow. When you set forth to do good.....look what happens!

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  12. Oh man, what a great post. My heart almost burst out of my chest imagining those children coming to understand how amazing "different" kids are and being filled with love for them. Ahh! I can't stop tearing up! And what a precious way to remember a precious little soul. Thanks so much again again!
    xo
    Miriam

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  13. Honey, you are amazing. Keep on spotlightin'!

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  14. I LOVE the Spotlights.

    When I found your blog a few months ago I went and read every single spotlight and was amazed and inspied by the strength and courage of the parents children and families.

    I do know some special needs children in real life and the spotlights have given me so much insight into how to proceed. Mr FF's niece has severe autism and other problems and I know sooner or later I am going to explain this a bit more fully to my son who is almost 2.

    I live in Australia but I subscribe to American Vogue and in this month's issue there is an article about a Mum caring for her terminally ill 3 year old and the challenges she has faced and how she honours her baby. It reminded me of the Mums and parents in the spotlight series. The whole issue is about Power but the best thing in the whole magazine is the mum writing about how she feels about her child.

    I know it is an enormous amount of work but I would be sorry to see you stop it.

    x

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  15. I also went back and read through every spotlight when I found your blog and I'm so excited when I see a new one in my reader. I am an Autistic support preschool teacher and love hearing about the kiddos from their parents perspective - though I know a lot about kiddos with special needs there is so much I just don't know about how parents feel about it all and what day to day life looks like outside the classroom. So great that they helped Harper's family find a diagnosis!

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  16. I also want to break into applause every time I watch a video of Lamp stacking blocks!

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  17. Anonymous11:13 PM

    WOW, how awesome :-)
    RIP Baby Lincoln. Hope that time will heal some hears, at least a little bit.
    Alexandra

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  18. I too love the Spotlights, Miggy!! I'm a special needs Mum in a way too, to a club foot cute patoot. In addition to feeling a connections to the other families and experiences, it is so GOOD that you talk about it, put it out there....the love we all share for our special kids. The saying, "as long as the baby is healthy" isn't all that is important, b/c we all know 'imperfect' babies are a light, a love, and a blessing too. More people need to know that.

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  19. hello from all the way from the philippines. i echo everyone's sentiments here :) please don't stop writing and featuring these brave families. they all give me hope and an amazing perspective on how to parent a loved one with special needs (i have a baby boy with down syndrome. i'm not sure how i stumbled onto your blog , but i'm so happy i found you. i also follow you on IG :D

    take care!

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  20. Anonymous8:06 AM

    Hello from Germany ... I love your Spotlights. Thank you so much for the time and effort you put into this! A.

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  21. i love the spotlights. i've sent several to you and i love being able to point parents to a source of support. sometimes the diagnosis is the same as their child's and sometimes it's not at all, but there is strength in support. i hope that you can continue featuring kids. i'm sure it's a ton of work!

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  22. Ever since my third baby was born 6 months ago, I haven't had time to blog...or even to catch up on most of the blogs that I follow... Your's is different. I love your blog for so many reasons, but the spotlights are always something that I look forward to. And even before my oldest daughter was featured on one of your very first spotlights, you helped connect me to another mother with a daughter who had the same syndrome as Isabella... a woman who I still keep in touch with and have grown close to without having ever met or spoken. I know how important these connections are. If it weren't for my online network of support in all of it's various forms (blogs, facebook groups, emails, etc.) travelling this road would be so much darker. I so admire what you are doing with these spotlights, I think you are reaching more people than you could imagine. Hugs to you!

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  23. Hi. Love the spotlights so much. My son has autism and sometimes if I'm having a bad day I come read some spotlights. It makes me feel like I'm not alone, I'm not the only one who faces something hard everyday and its okay! We can still be happy no matter what comes our way, and every child is beautiful. Thank you

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  24. So, you probably figured out now that Raphael was in Russia. As a result, he is not able to be adopted currently. I am so so so so so sad, but I also believe in my heart that one day he WILL be home, and SNS will have played a part in it. His grant money is still attached to him, and it will continue to be so as he remains in some sort of limbo. Just pray, that's really all we can do. Pray that Russia will open up again, and that beautiful boy, and so many other children, can come HOME.

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  25. Anonymous7:21 PM

    Your special need spotlight serie is one of my favourite readings and the first thing I check when I turn on my PC on fridays. It is really useful. You are making a difference for sure. Please, don't give up!

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  26. Just catching up over here... and WOW. I'm tearing up! You should feel very, very good that your hard work is important work. Love you my friend.
    PS every once in a while I show my kids Lamp's block stacking video and we cheer for her too. GREAT story about the classroom.

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  27. I love this. Just love it.

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