a secret.

Can I tell you a secret? I’m a terrible Down Syndrome mom. Stop shaking your head and formulating all the things you are thinking to make me feel better. First, let me explain why I am a terrible Down Syndrome mom. In the first few days after Layna was born I had a few people point me to this blog. Before you misunderstand, I actually love this blog and the woman who fuels it. She inspires me and I like her…I do go in and out of following her blog, but overall it’s good stuff. This, my friends, is the standard for Down Syndrome moms everywhere, and frankly I don’t measure up. There are no groups, social events, or community anything that we belong to. I haven’t raised money for anything. There was one out of six years I called attention to March 21, National Down Syndrome Awareness Day on social media. Abysmal. To be honest, most of the time I completely forget that she has a syndrome at all and sometimes that’s not a good thing. Not to say that I don’t have my moments where I hate how much I struggle to understand her because of what that extra chromosome did to her expressive speech development, or that I don’t have times where I wish desperately that she was not going have the “Down Syndrome look.” And can we just talk about stubborn streaks? Oi. Vey.

I’m a terrible Down Syndrome mom because I can’t bring myself to treat Miss Thang any different than her siblings or change our life to include something that is as basic to her makeup as her eye color (Hazel eyes of the world unite!) But Alas for her, she is mine and I am hers. While I may be a terrible Down Syndrome mom in general…I’m hoping that killer birthday cakes, daily water coloring and play-doh, and the occasional “If you don’t get back in your bed I’m going to come up there and PUT you back in bed!” will somehow help her create whatever life she decides is meant for her. Oh and rabbit water bottles. She will always be allowed to poach drinks from the rabbit water bottles.

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This year was her first friend birthday party and I was grateful she didn’t have strong opinions on the theme. Goodness knows she has strong opinions on other things (looking at you, “brushing my own hair”), but I’ve been intrigued by the giant cupcake cake pan for a long time and was excited for an excuse to buy one. That and it was cheap so absolutely no hang ups at all. Overall it creates an epic cake consumption experience, and I hope I can be creative enough to sneak it into all the birthday themes this year.

First we had a birthday dinner at my grandparents house. Once again, so grateful they up and followed us across the country. I would be missing them something fierce right now. Also, the husband and I realized that it’s a pretty unique and rare thing for our kids to be so close to their great grandparents. Neil had one set he would visit every couple of years and I only was close to one great grandma. So glad my kids have them.

On to the party! Balloons and lots of them are my favorite munchkin party game. Naomi’s 4th birthday was Rapunzel and we had balloons to be beaten with frying pans. Her 6th party (Halloween themed) had bat balloons. [I’d link to pictures but the party happened during my blogging hiatus. Sorry.] I loves them. Then we played “pin the cherry on the cupcake” which was awesome. Can I also say how grateful I am for my software architect who just picked up graphic design and made all my cupcake dreams come true? Yeah. He’s such good stuff.

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No one better than Daddy when you’ve had too much party.

Then we painted pictures of cupcakes. Through a devoted and rigorous daily practice, Layna’s style is really beginning to coalesce into a bold and well-rounded advancement of the medium. She is currently in her black period.

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Frosting and cake are a win. Full Stop. But when you let kids be the boss of those things? Magic happens.

Some for me. Some for the cake.

One of my favorite things about her is that she always says “thank you.” She doesn’t need prompting and it’s always loud and heartfelt. It also sounds like, “Wank you!” which, I think, ups the awesome quotient by at least 47%.

Even though I’m still negotiating the new dimension that this one tacked onto my Motherhood calling 6 years ago, I wouldn’t change it. The potty training fiascoes, the delays, the therapies, the everything has given me such a deeper awareness and appreciation for the silver linings that are everywhere. Layna is wonderfully forgiving and patient with me and I’m honored to be her mom. Here’s to many more happy returns for my snuggling, travel-sized-for-my-convenience, house elf!

 

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1 Comment

Filed under Food stuffs, Holidays, life the universe and everything

One response to “a secret.

  1. Simply spectacular, moving, hilarious and just….perfect.

    Sent from my iPhone

    >

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