Guest Post: Aunt Kristi

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To begin, I should probably mention who I am. My name is Kristi and I've known Crittle since we were plebes (freshmen) in college.

Fast forward a decade [she's being kind -- CS] and, well, I now call Kansas, and a small farm, home.

 But, last week I hopped a plane to the east coast and fell head-first into the role of aunt to the cutest kids I know (well my sisters kids are pretty cute but they are older so that doesn't count).

What a week it's been. I've done breakfast with Playette, reading time, bath time, just hanging out and playing time. I've helped with the littlest and handsomest little boy as well. Oh, if I never see orange poo again, I'll be good to go!

 My take away, Crittle is a rock star mom who needs a damn vacation! She's not allowed to delete this line either :)
[you know I would have -- CS]

 Motherhood, wow! To all you Moms out there, my hat and heart goes out to you! I have forever been amazed by my sister and this week was another period for me when I was blown away at how hard a job being a mom is and the amazing grace I get to see exhibited by great moms like Crittle. Is she perfect? Nope, but she's human and so loving and kind! As a result she's got two happy, healthy children that call her Momma. Wow! Her ability to function at all on limited sleep amazes me!

Since it is Down Syndrome Awareness Month, I wanted to do a guest post about my perspective as a friend and aunt to Playette. It's hard for me to recall the past and all of our fears. They seem so absurd in today's light. Let me tell you, they were very real back then. So be kind to yourself if you're scared...we all were.

What is it like from my perspective?... Hmm

Well, it's an amazing learning opportunity. I am constantly impressed by Playette's abilities vs her inabilities! She's so stinking smart and funny. Like any other kid, for real! She loves to read, tries to sneak in TV time when mom's not looking and on more than one occasion ratted me out for doing something to her mother!

Keep in mind, I've talked with Crittle about full classroom inclusion and Playette's new respite provider (who's amazing, btw). These are not normal topics for two old friends catching up about the challenges of having a kindergartner. Still, I welcome them. They make me much more socially aware of the challenges faced by families with a member that has a cognitive disability.

It helps me to speak up when in social groups regarding DS and be able to positively contribute instead of saying something lame or worse, rude. I can easily handle the question of “What's Playette like?” My response: Hilarious, lovely, and so much like her Momma. If pushed, I counter with being direct. Five years ago I'd have sidestepped the questions.

So, through this journey, as one of Playette’s aunts, I am learning and growing with her. It's a wonderful process of realizing there are no set limits for any of us and the best thing we can all do is try. We have no idea what the future will hold.

But let me tell ya, seeing her dressed up and heading off to kindergarten? That's a memory I will cherish for a lifetime!!!! I love that girl!

Hardest and best week ever!!

Second Time Around

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Today, my son is six months old.

I waxed philosophical about that fact for paragraph upon paragraph. And then I accidentally deleted it.

Maybe that meant those emotions, the revelations, were just for me?

Most of the time I feel like I'm writing to and for myself anyway. Which is a good thing. So maybe I needed that literal representation tonight.

It was all rambly anyway.

In a nutshell, I love my son.

I love that we had to go through hills and valleys before we met him.

I love that I eventually stopped being afraid to open up my heart as a mother again.

I love that he made us wait several times over, sweetening the moment of our meeting even more, making sure we were ready to take on all that he had to give.

I love the love I see between him and his sister.

I love that he notices no differences in her. He is in awe of her very being and she is infatuated with his.

I love watching him just...do. Even if it does create conflict in me sometimes.
If I put too much credence into his accomplishments, does that take something away from his sister who was challenged by such things?

I love his two teeth. But not when they bite me.

I am mystified by the fact that he doesn't seem to be hurt when he bites himself.

I am amazed that I've spent so much of my life not knowing him, so grateful that I do now.

I'm looking forward to the next six months, six years, six decades.

Whatever we're fortunate enough to have.

Sick Day

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If ever I needed to claim one, now is the time.


Just trying to make it through.

Here's hoping the fever breaks and we can resume our version of normal soon.

Myth Buster

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I had a thought today.


Well, more than just one, but y'know...

I've been up for more than a day, at times extremely frightened for the health of my boy. He's so little. His fever made him feel like a fireball in my
arms. I made multiple calls, asking for help. I had a bag packed for the ER and was thisclose to going.

My thought: I've never had to do that for his sister.

I think a lot of people believe that when they say they want a "healthy" baby, that automatically means one with 46 chromosomes only.

I used to think that.

The reality is that Playette is healthy and she has 47.

That's not to say that there can't be health complications with Trisomy 21. There are. It's well-documented.

But, every person is different. People with Ds are unique from one another, yet they tend to get painted with broad strokes. Everyone doesn't walk the same path.

I wish someone had told me that in our early days instead of just bombarding us with doom-and-gloom-filled worst case scenarios.

And there are never any guarantees in parenting.

Never.

About Connections...

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So, by now you know that yesterday was the wedding. The flower girl and her entourage loaded up the Futuremobile (seriously, my new car has way too many buttons and I give up) and we spent a couple of days in a new city, eating and sleeping and enjoying the camaraderie of others in a different environment and for a very special occasion.

By the time we made it to the wedding site, Playette was totally hype, bouncing off the walls, and, I feared, on the verge of a meltdown. She was so excited that she wouldn't nap, no matter how much I begged. I was petrified that she'd show her fatigue right as the ceremony began.

But, no. She did great. I was so, so proud of her, but, of course, she was even more proud of herself. I think we'll be subjected to "playing wedding" for quite some time to come.

Sorry for the crappy crop job. I didn't ask permission to post anyone else on here, so I want to be respectful. Playette was super slippery and hard to catch in photos, regardless, so I don't have much to choose from. 

What's most important though is why we went.

It was necessary.

The bride used to watch Playette for us, back when we lived in VA and I was working outside of the home, trying to get more things done in a day than hours existed for. We were fortunate to have a young woman recommended to us by friends that were leaving the area, so we welcomed her into our home and the life of our little girl.

She would pick her up from school and take her to therapy. They would go to the park or stay in the house to sing and play. She even let Playette practice her mad hairdressing skillz on her own locks.

And even after this young woman moved two hours away, she would still request to come and watch Playette whenever her schedule would allow such an undertaking.

This is someone who showed compassion, patience, kindness, and all the love a parent could ever hope to exist from a caretaker to their child.

So when she asked if Playette could participate in her wedding? I wanted - needed - to make that happen.

You want to know what I saw for the first time at the reception last night?

A brother-sister dance.

I've been to plenty of weddings.

I've seen the bride-groom dance.

I've seen the father-daughter dance.

I've seen the mother-son dance.

But this was my first brother-sister.

Which brings me back to something that actually relates to Ds Awareness.

The bride's brother happens to have Ds.

I have heard for the last five years how siblings of people with Ds tend to come away with more compassion, patience, kindness, and many other desirable traits.

I need to look no further to know this much is true.

There are plenty of people who are afraid that having a child with Ds will with make other children in the family suffer.

That's not what I saw last night. I saw a bond between two adults that I wish I could say existed between me and my own sibling.

And also? I couldn't help but wonder about the connection that people with Ds have with one another. Do they immediately notice the similar features and throw each other signs so secret that those of us that lack the extra chromosome miss it altogether?

Because one of the sweetest things I saw was that one particular groomsman dancing with the flower girl. He claimed her as his "daughter." He saw something in my girl that he connected with right away.

I left there feeling like I had witnessed some of what is best about this world.

Flower Girl Preview

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Clicky-clicky if you'd like to see Playette all dolled up for 8 seconds.

More to come!

Before and After

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Yesterday. Picture day. Waiting for the bus and then, later, at pick-up.

I swear I didn't get mad.