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Saturday, May 31, 2014

Guess What Max Did Today

I had planned an entirely different post for tonight--a well-organized, well-edited, polished kind of piece, but I'm a week post-surgery (nothing life-threatening) and frankly, I'm tired. So, instead...

Grocery shopping. Ugh. A seemingly benign, and often enjoyable experience rendered almost intolerable by one's own small children. There's one grocery store in town that has carts large enough to seat two children side-by-side. Unfortunately, that's not the one that houses my bank, so this afternoon we braved the other one.

Until recently, I could put Max in the seat and nestle Chance's bucket in the cart, squeezing groceries in around the edges. Chance is too big for that now, so today he sat in the seat and Max walked alongside.

Let me say that again in case you didn't quite catch it.

Max walked alongside.

Through the entire store.

For 30 minutes.

It wasn't perfect. There was some flopping, one unexpected break for the door, many misplaced items and a box of cookies I didn't plan to buy, but we did it.

I feel like I passed a test. A really, really hard test.

Now here's the real question: Can we do it again next week?

How do you keep your toddler near the cart? Tell me about it in the comments.

And now, a couple of goodnight, back lit, phone pics:





Wednesday, May 28, 2014

To the New Momma I Spoke with on the Phone Today


There are two important things you need to hear right now, again and again and again:

Congratulations!  And, it gets better. Cliche, I know, but it's true.

While the world comes crashing down on you, it's impossible to see. After all, THIS only happens to OTHER people. But after you've fully mourned the loss of the child you thought you were having, as well as the future you and your husband planned, I promise you, it gets better. After those first months in and out of doctors offices, it gets better. After the first thousand, well, she has Down syndrome's, in response to well-meaning but unobservant strangers, it gets better. After you've cried your last tear, and let escape that last primal scream of anguish, I promise you, it gets better.

From this moment forward, everything in life, both yours and hers, is earned. Every smile, every laugh, every tear of joy. You will see your little girl work harder for the seemingly simple things in life than any other child you know. She will sit, but she will work for it. She will crawl and she will stand, but she will work for it. She will walk, she will talk...she will work for it. She will work every day of her life to make you laugh, and make you smile, and when you do, she'll work even harder to do it again. And you'll work just has hard to make her life just as easy as you can. That effort will become the source of the greatest joy you will ever know.

And then one day you will wake and you will realize that this unexpected, life-changing little being has, of course, changed your life, but not in all the awful ways you thought. Her presence will inspire you to achieve your greatest self. For her, for you, for your family. One day you will look in the mirror and you will see a new person, a better person, a person you can truly be proud of. She will make your life complete.

So even though you didn't choose to be here, in this community, know that when you are ready, it, she, we will be here to help you every step of the way. Everything will get better.

Better than you can possibly imagine.

And one day, when you get a call from a new momma, you can honestly and genuinely say, "Congratulations!"





Tuesday, May 20, 2014

Completing the Requisite Sleep Study

Down syndrome comes with lots of stuff. Good stuff, bad stuff..."eh" stuff. Somewhere between "eh" stuff and bad stuff are the sleep disturbances. Some are dangerous, like obstructive sleep apnea. Some are scary, like night terrors. Others are just annoying, like night waking.  

Down Syndrome Education International has a terrific explanation of the most common sleep disturbances, like reluctance to fall asleep, waking, mouth breathing, and bed-wetting. While you visit, check out their very enlightening comparison of the frequency of sleep disturbances in children with Down syndrome compared to typical children, as well as suggestions on how to deal with several of them.

To get a better idea of how our children sleep many physicians recommend a sleep study somewhere around age four.

Max has his about two weeks ago at Boston Children's Hospital. From our point of view, Max's sleep is very disturbed--reluctance to sleep, waking, night terrors, flopping--so I was surprised to hear that Max's study showed normal sleep behaviors. Huh.

Some of you will be preparing for your little one's sleep study soon, so here's a look at how it went.

On the night of the study, Sean packed Max into the car already in his pj's and arrived at the hospital at 7:30 pm. They went directly to the sleep lab where the technicians allowed Max to roam the space, Mickey Mouse dragging behind, while they finished their initial preparations. Likely an anxiety reducing strategy.

When the techs were ready they plopped Max on the bed and went to work inserting and securing the nasal cannula and attaching the senors to his scalp. Note the strategic use of the iPad here. Max was too busy playing his game to notice the activity around his head. If your child doesn't use an iPad I recommend bringing a book, or movie or other activity he or she finds very engaging. You'll be happy you did.


To make extra sure none of the sensors slipped, the technicians wrapped Max's entire head in gauze. He looked like a binky-sucking cotton swab, but still didn't seem to care that much.


The straps around his torso secured a large sensor pad his back, and those cords, well, who the heck knows. Despite all of that seemingly unbearable equipment, Max fell asleep in seconds flat, and stayed asleep all night. Kinda like taking your clunking car to the shop where it drives beautifully for the mechanic.


Sean "slept" next to him on a pull-out chair, and around 6:00 in the morning the technicians woke Max up. They quickly removed all their gadgets leaving Max's hair a sticky, greasy nest, and sent Daddy and child on their way. 

There was nothing to it. I have heard that some children freak out a bit during the hook up, but calm down once the chaos clears. What seems to be universal, though, is that parents bring whatever makes the kiddo feel calm. Max's Mickey, iPad and binky went a long way toward helping him feel more comfortable.

Have you or any of your kids had a sleep study? I'd love to hear about it, and I know some other readers would too. Tell us about it in the comments.

Thursday, May 8, 2014

How Google Made Me Cry

I recently got a new phone--a Samsung S5 so it's entirely controlled by Google. My thoughts on that matter are many and varied, but this is not the time nor the place. Let me get to the point.

This afternoon, the bell that alerts me to check my phone chimed so I pulled down the "notifications" tab. "Auto Awesome - new video, " is what it said.

I hadn't seen this one before, but it said it was awesome, so.... So I clicked it and was greeted by the video below. It seems Google made it for me with some videos and pics I took at the park on Sunday.

video


As I watched I smiled, then cried. Then I felt a little strange about it, imagining someone out in northern California remotely searching my phone. Then I came to my senses and cried again. Can't wait for my next "Auto Awesome - new video."

Monday, May 5, 2014

Focus on the Positive

Some days are hard. Today ended hard but didn't start that way. It started in the normal way. Early alarm, shower, dress, breakfast. Then at 6:00 I heard Max's door click and the morning quickly went from normal to, "Yeah! I get to see my boys!" That's a rarity on workday mornings.

With bottle in hand I crept upstairs and found Chance gnawing the crib rail. He giggled when he saw me. As I changed his diaper he took long, relieved drags on the nipple. Sean kissed my cheek on his way to the bathroom and Max patted my hip and babbled until I said, "Good morning." And it was.

But like I said, today ended hard. I won't dwell on it here, but it was filled with vomit and cancelled plans to watch Daddy play softball.

Instead, I focus on the positive, like this morning, and some moments from this weekend. Please enjoy them with me.