Some days it’s incredibly hard to say things, to write things, emotionally you’re torn up about how to say something the right way. Today is one of those days, and the only way I know how to deal with this is through total open honesty. This is a very tough post for me.

Three little angels passed away recently and a deep emotional sadness descended on the community. A sadness that makes it very difficult to talk about this subject. I want to pay my respects, but I also want to respect the despair that these families are dealing with right now.

I know very few children who have passed away, but I do know some. I think of them often, for the girls that I do know, I make them a Profile Avatar every time I make a new set. That might seem like a strange thing to do, but I do it because I sometimes struggle to find the right words to say, or comfort, I do it because I want them to know I think about them, and their parents.

The subject is belonging.

In recent weeks I’ve been speaking to parents I didn’t know previously, who’ve lost a child to Rett syndrome prior to ever talking to me. I didn’t have the privilege to get to know them, or their daughters, until some time later.

Not only are these parents dealing with the loss of their daughters (and sons) but in some small way, they worry that they might be losing the strength and friendships provided by this community too.

For many people in this community, there is a deep solace and comfort in the bond of friendship and support that is forged through sharing your life with Rett syndrome. You find comfort in sharing things with people who understand and accept everything you are and every challenge Rett brings.

Who you have become, because of the trial of Rett syndrome, has shaped you and there is always a place for you in this community. Not just because you have us to lean on, but also because at some point, we are going to need you. Your caring, your wisdom and your strength. You belong here, you will always belong.

From me personally, whatever I make, there will always be something for you and your child. Please, don’t hesitate to ask or share anything.

Thank you to Melinda, Sara and Shayne who helped me find the right words and as always to Faith who makes sure I put them in the right order.



6 thoughts on “Belonging

  1. Duncan you know how much this means to me. Thank you for allowing Livvy to be remembered in your avatars but also thank you for allowing a grieving mom come inside a little.

  2. I could not agree more! Once you are a member of the Rett Syndrome family you are ALWAYS a member of the Rett Syndrome family. These moms, these families are amazing.

  3. Shayne says:

    Thank you Duncan … For listening to my grieving soul… and the beautiful avatars you make for our girls.. If anything I can do to help in any way please don’t hesitate to ask…. Love to all my Rett families!!!

  4. Pam says:

    Forever will all the Angels who have gone on before ….Not only will they not be forgotten but neither will their families! We are a strong unit, this Rett Journey we are all on, it never ends….NEVER!

  5. Yazmin Diaz says:

    This is beautiful…as usual! My heart goes to the parents that have lost a child on general. I would never comprehend their pain and sorrow.
    Thank you Duncan 🙂

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