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.
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,
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.