tag:blogger.com,1999:blog-36472275041844006982024-03-13T13:09:39.339-07:00The Wee-Small Adventures of Mini ClenneyWalk softly, and carry a big pacifier....Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.comBlogger230125tag:blogger.com,1999:blog-3647227504184400698.post-91279206689381542982014-10-21T09:09:00.000-07:002014-10-21T09:09:08.691-07:00RedrawHiya, Cheeksqueaks!<br />
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I'm pulling my time and energy back from some less-than-encouraging spaces in order to devote more of my attention to this one. While I spend most daylight hours chasing a moderately mobile toddler who crab-scoots with the speed and aptitude of Futurama's Zoidberg, I still manage to eke out breathable amounts of recreation during baby naptime, during which I must use my precious stillness both wisely and quietly.<br />
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Therefore, blogging is back in.<br />
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Facebooking is out.<br />
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Bow-making, book-reading, and crock pot-stewing are also in.<br />
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Out: Department store-wandering, afternoon judge show-watching, toenail-bedazzling, and fantasy novel-perusing.<br />
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And above all, family-knitting-togetherishness is the innest of IN.<br />
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Time to redraw the circle I dance in, then abandon myself to the steps. <br />
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-38919619835952320052014-08-30T19:04:00.000-07:002014-08-30T19:04:04.361-07:00Beach Baby!Before I get completely carsick and yarf for reading my own writing in the back of a moving vehicle, I want to take the opportunity to tell you why this road trip to Florida has proved to me yet again why we won the baby lottery when we were blessed with Ava Leigh.<br />
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Being in the car for two days at a time can really fry a kid's marbles. <br />
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Cheeks was like, "Oh, you're gonna play Sesame Street for the seventeenth time and feed me Ritz Bits? I am SO down with that....AGAIN!" <br />
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Not that she didn't have her moments of sequestration-induced nuttiness.<br />
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We took her to dinner every night (except for mommy/daddy date night!), sometimes around bedtime (since that's when we would be rolling into town), and she would have every nearby table flirting with her and any waitress in the joint squeezing her soft little paws and tickling her chin. The maid from our hotel couldn't help from giving her a smooch and a snuggle as we were leaving. All she ever had to do was sit in one spot and wave, confident in the expectation that every soul in the room will soon be in her thrall. It still astounds me how she draws so much goodwill and affection from perfect strangers....even people who look like they've never attempted to smile in their whole life.<br />
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<i>I dare you not to smile watching a toddler eat seaweed salad.</i></div>
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Aaaaand I got to hold her hand a lot.<br />
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Holding hands with a child with Downs is like holding hands with a cheribum made of marshmallow.<br />
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Her hand is still newborn-soft....<br />
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...even though now it smells more like peanut butter slobber and Cheerios instead of Johnson & Johnson's.<br />
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Oh, and this week, I decided that she somehow grew even prettier in the Florida sun.<br />
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As if that could happen. <br />
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It's already kind of a crime against nature for a kid to be this cute.<br />
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-70188219946938122362014-08-19T21:43:00.001-07:002014-08-19T21:43:21.994-07:00Rules of Food<div style="text-align: center;">
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by Ava "mini" Clenney, </div>
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as interpreted by Heather Clenney</div>
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I am willing to try anything once.... As long as it doesn't appear to be gelatinous. It doesn't matter if the food item is something the majority of children gobble with gleeful abandon (Ex: mashed potatoes, pudding, yogurt, boogers). A good rule of thumb is: if it slides, I will yarf.</div>
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If Honey Boo Boo Dog is present during mealtime, the pattern goes: a nib for me, the rest for you. Exception: Cheerios, soup, tofu.</div>
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Condiments go in the hair.</div>
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Small, difficult-to-pick-up foods go in the floor.</div>
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Corn goes in the air vent.</div>
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In restaurants nice enough to offer cloth napkins, be polite and coy. Eat the most sophisticated dishes with relish and flirt with the waiter and every senior citizen in the room. Convince Mommy and Daddy you are a sweet angel pie when taken out to eat.</div>
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Be an unrestrainable food-flinging gorilla child at Taco Bell.</div>
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When possible, chase a bottle of milk with a few raw onion slices. Insist on being passed around the table for a round of kisses.</div>
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Blueberries = body art.</div>
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Everything tastes better with your foot suspended in the air.</div>
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Get excited about vegetables! They get excited about you. They tell you so.... Loudly. And stinkily.</div>
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Chocolate cupcakes make one free of all restraints of behavior and bedtime. WHEEEEEEEEEEEEEEEEEEE!</div>
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There must not be more than three items on a high chair tray at a time. Rid yourself of their presence forcefully and immediately. Failure to do so may result in the reversal of Earth's polarity. Best to be on the safe side.</div>
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You can get a lot done with a few sharp teeth. Just look around. We live in Arkansas.</div>
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Enjoy food. It gives you pleasure. And energy.</div>
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And gas.</div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-36886470550891959932014-07-11T08:02:00.002-07:002014-07-11T08:02:28.778-07:00Itsy Bitsy<div class="separator" style="clear: both; text-align: center;">
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On a boring day in pulmonary clinic....</div>
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...what else is there to do besides work on our Itsy Bitsy Spider?</div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-2385428075510897302014-07-10T13:48:00.001-07:002014-07-10T13:51:18.453-07:00The Zombie Parenting Manual<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It amazes me how much parental perspective can shift in the course of twenty-four hours.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">One moment, I'm boo-hooing into my longsuffering husband's armpit because Ava's had a choking spell and I'm convinced my instincts aren't sharp enough act in aid to keep her lung clear..... and then the next morning I'm beaming back at her pediatrician whose ecstatic gushing over her health and development plasters my previously broken heart with smiley-face stickers.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />In my quest for reassurance -- the kind that no well-meaning Facebook comment can provide -- I'm coming to the conclusion that ALL parenting is fraught with danger, and when you invite another individual into this world, you're essentially handing them your heart to use as a chew toy. </span><br />
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<span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Just the fact that they exist has he potential to thrill you to tears, as well as to terrify you beyond all reason.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There is no perfect assurance they will be okay.... Or okay as YOU define it. God's ways being above our ways and all, sometimes his Way is not our preference. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Maybe this is why I meet so many incredible parents when we're in the hospital with our daughter. The trials of illness and disability are capable of spitting out very calm people on the other side. These parents who have walked through the fire with their kids are ALWAYS the first people I would contact in the event of a Zombie apocalypse. They'll nail the fort shut, calmly assess the food supply, and engage you in honest, heartfelt conversation regarding your child's brush with braineaters until the wave of unded bypasses your burg. They'll never whine about the invasion or the lack of chocolate pudding packs in the rations. They're just gonna keep the windows and doors secured and make short order of any zombie dumb enough to dance with a chainsaw.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Gruesome metaphors, perhaps. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Sorry.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I'm sitting in the teen romance section of a bookstore, and apparently they're all the rage in romance these days.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Anyway, the meat of the matter (ew) is this:</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Parenting is a unending cycle of celebration, diligent exhaustion, and fear.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Kid learns how to crawl after months of medical professionals reminding you that their development will be challenged. You cheer them down the hallway. After a few weeks, the novelty wears off, and you tire of chasing them. You pull all the pluggables out of the walls and try to keep a fascinating toy in their hand at all times. Then your kid discovers the allure of dark, steep stairwells, and it doesn't matter whether you're too tired to chase them or too broke to buy a baby gate. You make do with a big, ominous box on the landing.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">You deal. And if you've been a little further down a dark road with that kid, you're just excited to walk a bit further with their little hand placed trustingly in yours.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-17128414579786385662014-06-24T10:09:00.001-07:002014-06-24T10:09:46.447-07:00So Big..... Like YOU!<div class="separator" style="clear: both; text-align: center;">
<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-size: 18px; line-height: 24px; text-align: -webkit-auto;"><span style="font-family: Trebuchet MS, sans-serif;">I'm sure that most parents have a moment when they look down upon their rapidly-sprouting progeny and say to themselves, "Holy moly! I can't believe it's natural for a kid to grow this fast! They must be putting hormones into our baby food these days...."</span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Well, excuse the peas and carrots outta ME!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Being the mom of a little girl with Down Syndrome, I thought I had a fair advantage. Some wishful bit of my heart -- the part that obsessed over having a baby of our own for years and years -- felt smugly, if not wrongly self-assured that I would get to enjoy the smallness and the helplessness of the baby years that mother-hearts crave.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Well, guess what. Ava Leigh is developing so fast that at seventeen months, my head spins at how rapidly she's learning how to conquer her little world.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And you know what? I don't mind one bit. I like the toddler years EVEN BETTER. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Yes, that's right. I wrote those unwritable words. I LIKE my kid as a toddler.</span></div>
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<i><span style="font-family: Trebuchet MS, sans-serif;">More fun than a barrel of beetlebugs!</span></i></div>
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<span style="font-family: Trebuchet MS, sans-serif;">She's tossing her cookies rarely, if ever, at all. That factor carries huge weight.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">She wants to mimic everything we say and hear. The cute stuff. The bossy stuff. The not-so-Baptist stuff. Even the inanimate object stuff. (I was listening to bagpipe music one evening and I swear on a stack of kilts that she was trying to imitate its wail and keen!)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">She wants to go everywhere she sets her mind to, and it doesn't matter if she has to do the splits ten dozen times to get there. She's gonna get that ball/dust bunny/flip flop and do what she pleases with it. (Usually what pleases her is to lick it.)</span></div>
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<i><span style="font-family: Trebuchet MS, sans-serif;">It's our booty, we can crawl if we want to!</span></i></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Maybe this thrills me so much because I hoped that she would be as bold as her daddy, and not so reticent as I am. When she was born with Downs, I think I put that hope for her on a shelf and didn't give it much more thought. I regret having that attitude -- just because Ava has her own unique set of genetic blueprints doesn't mean she doesn't have a lot in common with other members of her family. I'm truly thankful that she has her daddy's see-it-through-ness, and her great-nana's boldness, my independence, and my great-granddad's wackiness. The more she grows, the more I wonder if that extra chromosome gave her an EXTRA magnified dose of some trait on one side or another. </span></div>
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<i><span style="font-family: Trebuchet MS, sans-serif;">She's sassy...</span></i></div>
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<i><span style="font-family: Trebuchet MS, sans-serif;">...affectionate...</span></i></div>
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<i><span style="font-family: Trebuchet MS, sans-serif;">...and a wee bit irreverent...</span></i></div>
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<i style="margin-left: 1em; margin-right: 1em;"><a href="http://4.bp.blogspot.com/-VvevilGeKxs/U6ms_2hjLQI/AAAAAAAAEJI/1xps1klDIeA/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/-VvevilGeKxs/U6ms_2hjLQI/AAAAAAAAEJI/1xps1klDIeA/s1600/image.jpg" height="320" width="239" /></span></a></i></div>
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<span style="font-family: Trebuchet MS, sans-serif;">She is becoming so much more herself.... Yet she is an uncanny mirror of so many beloved family members.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I wish that I could reassure so many other new parents of kids with Down Syndrome that no matter how unique their child is, their son or daughter will undeniably possess attributes that will help them identify with other members of their family, whether it's a physical similarity or an expression of their personality.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">It is SO important for children to be valued for how they stand out in the world.... But isn't it just as important for them to feel that they belong?</span></div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com2tag:blogger.com,1999:blog-3647227504184400698.post-70772490049732658352014-05-30T08:31:00.001-07:002014-05-30T08:36:24.580-07:00Pooh's Betrayal<div class="separator" style="clear: both; text-align: center;">
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-17093975730582763652014-05-30T08:21:00.001-07:002014-05-30T08:21:48.372-07:00Army Crawl, Take One & Two<div class="separator" style="clear: both; text-align: center;">
Sometimes you feel like a plop.....</div>
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....then sometimes you crawl. In your own peculiar way, of course.</div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-35910940443517967542014-05-05T09:54:00.000-07:002014-05-05T09:55:51.150-07:00Dinner and a Show<div class="separator" style="clear: both; text-align: center;">
<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px; text-align: -webkit-auto;"> Things are returning to equilibrium in Ava's life these days; she's playing, learning, and eating more than she ever has prior to any of her tummy surgeries. As parents, have begun to identify her developmental progress as a series of hills and troughs instead of a crescendo opening its mouth to swallow and digest her milestones -- and hey, that's okay. As our wise pediatrician Dr. O' Neill says, NO kid grows according to a chart. </span></div>
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I admit that I've purposefully pulled back from writing in this space so much, but only for the purpose of devoting the benefit of my full attention to putting weight on her post-stomach bug and generally trying to create a sense of security for her that gradually diminishes the tearful sensitivity and clingy tendencies she develops when she gets sick. It took a couple of weeks for her to get over the hump, but once she made it, she was finally sitting down in restaurants gobbling from my fork and waiving down weird strangers in Walmart like her old self.</div>
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<i>Viva Italia in Hot Springs!</i></div>
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I've noticed that this time of concentration on her emotional development -- staying home every chance we got, actively engaging her in play, stuffing her with calories in every creative way we could think of -- has fostered another blooming season for her, and she's now revealing to us more of her dazzling little-person personality. She' a funny little muppet, and really no longer a baby.</div>
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She'll mutter and whisper to herself when she's waking up in the morning or doing little playtime tasks; even if most of her vocabulary consists of "da-BA-dee-Gee!", she obviously comprehends the dynamics of language! </div>
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Although we're STILL working toward crawling and walking, she's performing the precursors to these milestones in her own quirky ways. On more than one occasion I've seen her inchworm across the bed or carpet, dragging her face along she butt-propels herself (*cringe*). She also takes particular pleasure in pitching pacifiers or toys "overboard" from her bed, then pulling herself up onto her knees to view the damage below. </div>
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I think the thing that excites Daddy the most is her unexpected predisposition toward organization. That's right, I said organization. If her blocks or Easter eggs aren't in the bucket or bin she feels they should be in, she busies herself by turning in circles on her bum trying to gather them all up so to pitch them in, all the while muttering to herself like an under-appreciated hausfrau the whole time.</div>
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Sometimes we just turn off the idiot box and watch her do whatever she does, the little busybody monkeymess. </div>
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You can't buy entertainment like that.</div>
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Well, maybe for a Nutella-smeared graham cracker you can.</div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-316563878903324702014-04-13T08:00:00.003-07:002014-04-13T08:02:41.912-07:00Too Careful.<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); font-size: 18px; line-height: 24px;"><span style="font-family: Georgia, Times New Roman, serif;">If I hear one more person try to advise me to "let the kid cry -- it's not going to kill her," I just might scream.</span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">My reticence to leave her crying in the arms of someone else while I remove myself from the room has nothing to do with attachment parenting, or her being over-sensitive, or me being overprotective. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">All I can do in order to keep my tongue in check is to remind myself that others don't have the slightest clue what it's like to have to deal with the consequences of allowing her to get ratcheted up. Maybe I should explain it to everyone in a way that put them in my position.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Imagine you're handing your kid over to a trustworthy, capable adult and walking away. The kid starts to cry. You tell yourself that it's just a "mommy attachment phase", and keep walking.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Kid doesn't feel well. Has had multiple stomach surgeries and has issues with keeping food down. Kid cries so hard that she throws up. Since she has low muscle tone and difficulty coordinating her swallowing, she gags on some of the vomit, panics, and breathes it into her lungs. Mom has no idea that she has done this. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">When the stomach flora in her lungs sets up as infection/pneumonia, she'll likely end up in the hospital where she'll likely lose more weight that she can't afford to lose because the infection affects her appetite. Then, if her infection is managed, we get to go home and put a tube in her nose and tape on her face every night so the damage to her lungs doesn't let her oxygen saturation get too low while she sleeps, damaging her further. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">So yeah, maybe she won't die from crying.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Maybe we'll just get to go home with another shiny piece of medical equipment that complicates her life and disturbs her sleep even more.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Oh -- you mean like the one we went home with a couple of months ago after a random crying/choking/aspiration pneumonia episode?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Hmm?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">......</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Okay. I think I'm calmer now.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">And now I've explained myself without walking off in tears or isolating us.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I'm seriously trying to forebear. I am.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I'm not trying to embarrass anyone or even get an apology. I'm explaining my actions so maybe we can have some quiet understanding on such matters instead of me nursing resentment in my heart.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">That is all today.</span></div>
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<br /></div>
Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-48380618512300932802014-04-12T08:20:00.001-07:002014-04-12T08:22:13.440-07:00Spring Viginettes<div class="separator" style="clear: both; text-align: center;">
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I love communing with nature, ma....</div>
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...especially when it calls.</div>
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My favorite spring outfit.</div>
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Pollen, Schmollen!</div>
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Joe Cool.</div>
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I do not know what you call this magnificent round rolling contraption,</div>
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but I have concluded that it is man's finest contribution </div>
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to the entertainment industry.</div>
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I think you had better stop right there, Mr. Wood Bee....</div>
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Nothing like watching the sunset in the arms of a strong, handsome man.</div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-78397270200767382352014-03-31T08:52:00.000-07:002014-03-31T08:52:16.839-07:00Release.<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">I regret that it's taken me over a week tell you about the lovely time we had celebrating World Down Syndrome Day last Friday (3/21/14).</span><br />
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The truth is, I've had a lot of serious thinking to do before I let my fingers do the talking.</div>
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I'm a bit ashamed of myself, to be honest. You see, this was the first gathering of the Down Syndrome community I had ever sought to attend, even though I've been invited to everything the Buddy Talk Facebook community has put on. Naturally, attendance was out of the question when Ava was in bad health, but I still chose to keep our family on the sidelines long after I felt comfortable blowing-and-going at the speed of a modern family.</div>
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I can only put this out there in hopes that you won't judge me harshly; my only defense is that my actions are a product of fear, and that fear is rooted in an inherent drive to protect our daughter.</div>
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I wasn't scared of what it would be like to meet so many other children and adults with Downs. Heck, they were the life of the party! Being around so many sunny, social individuals, one couldn't help but smile the entire time. It was a huge encouragement to watch them playing rowdily with their siblings, or making their rounds for conversation. In my eyes, each one was a puzzle piece of Ava's future I could put all together for a peek into what appears to be a very promising adulthood.</div>
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What I DIDN'T look for -- and what I was scared of finding -- were children who were ill. I guess in my mind, if I saw quite a few children there who were weak and sick, that would also mean that possibility would be looming over Ava's head. </div>
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Most all parents of children with Downs have that doctor's handout tucked into a folder somewhere -- the one detailing all of the screenings that have to be done throughout these individuals' lives. A list of bullets to dodge. Timely reminders that You're Never Out Of The Water Completely.</div>
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I find it so hard to reconcile those possibilities of future difficulty with her present state of being. We still struggle with gaining the upper hand on a few developmental issues, but for the most part we try to let Ava be the messy, pretty, über-social toddler that she is. We reminder ourselves that bringing a child into the world is ALWAYS fraught with dangers and uncertainties, and that maybe we're fortunate to be better equipped than most to watch for hers.</div>
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But back to the gathering: I was so busy being nervous about what I might see someone struggling against, it took me a few long minutes to settle into the reality of the scene: I seemed to be the only one cowering like a lightning-licked goat; everyone else was playing and moving from circle to circle. I think the moment I finally allowed myself a gulp of oxygen was when I ran into a friend of mine from the Buddy Talk board. Her son, Drake, was born two weeks before Ava, and let me tell you, this child will soon take the modeling world by storm. I mean, this baby boy has eyelashes that would melt an ostrich's heart.</div>
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I'm pretty sure a betrothal will be arranged soon.<br />
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Hey, it's never to early to lay the foundation for a timeless romance.</div>
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Anyway, it took me a beat, but having that face-to-face contact with another family who seemed to be having nothing but fun out in the late-day sunshine just helped me to relax and be present in the moment. </div>
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We batted balloons. <br />
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We took pictures.</div>
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We couldn't believe Daddy could open his "mouf" so wide.</div>
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We laughed watching the little feller with squeaker shoes go on a one-man dance parade around the event announcer.</div>
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And when we left, I wasn't thinking about surgeries or aspiration episodes or growth charts.</div>
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I was thinking about hundreds of blue and yellow balloons, one for each chromasomally-blessed person we loved, floating up like prayers of appreciation for their presence in the world.</div>
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And I was also thinking of Mexican food.</div>
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And Fraggles.</div>
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(Because this is how my brain works. Hey, SQUIRREL!!!)</div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-72392646328204437692014-03-19T18:33:00.003-07:002014-03-19T18:33:37.033-07:00Peacemakers.<br />
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<span style="font-family: Verdana, sans-serif;">“4:1 I therefore, the prisoner of the Lord, beseech you that ye walk worthy of the vocation wherewith ye are called,</span></div>
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<span style="font-family: Verdana, sans-serif;">With all lowliness and meekness, with longsuffering, forbearing one another in love;</span></div>
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<span style="font-family: Verdana, sans-serif;">Endeavouring to keep the unity of the Spirit in the bond of peace.”</span></div>
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<span style="font-family: Verdana, sans-serif;">- Ephesians 4:1-3</span></div>
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<span style="font-family: Verdana, sans-serif;">At end of many days, when our family's attention turns toward our preparation to rest, I often find myself wrestling with a busy mind. There are so many encounters I have learned to expect when we are out with Ava -- encounters which spark questions about her health and her general condition -- which are unavoidably imprinted upon my brain. These conversations are stirred like a soup over a fire that is stoked throughout my day with questions and assumptions of my own: What did this person mean by that question about her ability to do such-and-such , or Does he seriously think that her difference is something to apologize over?</span></div>
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<span style="font-family: Verdana, sans-serif;">Some nights I find it difficult to put these conversations to bed. As a result, I dismantle every word, every reticence to make eye contact, every insensitive pry, and my wounded heart begins to accuse the person who might have had more questions than sense. </span></div>
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<span style="font-family: Verdana, sans-serif;">I build walls around my "right" to be upset with them.</span></div>
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<span style="font-family: Verdana, sans-serif;">Within those walls, I build towers to look down upon those who have offended me.</span></div>
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<span style="font-family: Verdana, sans-serif;">In my mind, I pour my own so-called wisdom-earned-through-experience upon their ignorant heads, and then I sit up there all alone in my tower and feel really smug about shutting them down.</span></div>
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<span style="font-family: Verdana, sans-serif;">But wait... Isn't the whole purpose of wisdom to open UP someone's mind to the truth, rather than to dole out a verbal spanking and send them on their merry way?</span></div>
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<span style="font-family: Verdana, sans-serif;">I am learning very quickly from those who seem best adjusted to unforeseen circumstances regarding their children: </span></div>
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<span style="font-family: Verdana, sans-serif;">Look beyond the questioner's inappropriate words, and into their intentions.</span></div>
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<span style="font-family: Verdana, sans-serif;">Perhaps they're asking "how bad is it" because they'd want to know how gently to treat my child.</span></div>
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<span style="font-family: Verdana, sans-serif;">Maybe they want to know how many health problems she's had because that's something they can easily sympathize with, and they are truly concerned for her health.</span></div>
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<span style="font-family: Verdana, sans-serif;">What if a well-thought out query such as, "How does that affect her life?" comes out sideways in a question like, "So what all is wrong with her?"</span></div>
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<span style="font-family: Verdana, sans-serif;">Or what if I'm just tired that day, I'm hungry, or I'm having a pleasant stroll, and don't feel like standing around and delivering detailed dissertation on the numerous expressions of an extra 21st chromosome to a perfect stranger?</span></div>
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<span style="font-family: Verdana, sans-serif;">All of these moments have happened, and will continue to happen. I'm at peace with that. There are no hard-and-fast rules that guide common discourse anymore, and so anytime we leave the security of home, I can count upon Ava's quirky sweetness to draw attention and spark strange conversations wherever we go.</span></div>
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<span style="font-family: Verdana, sans-serif;">I can't fight a one-mommy battle to bring the world to a perfect understanding of what is appropriate to ask a parent of a child with Down Syndrome. I can be my child's advocate and, for now, her voice, but one day, she will be able to speak and react for herself.</span></div>
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<span style="font-family: Verdana, sans-serif;">And when she does, I want her to have learned through her parents the importance of forbearance. I want to guard her against the dangers of being controlled by hot-responsive emotions. </span></div>
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<span style="font-family: Verdana, sans-serif;">I want her to speak clearly, and with honesty, in full knowledge that someone's false assumption of her being has no bearing upon her dignity.</span></div>
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<span style="font-family: Verdana, sans-serif;">I believe with all my heart that she is called to be a peacemaker.</span></div>
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<span style="font-family: Verdana, sans-serif;">And as her parents, so are we.</span></div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com1tag:blogger.com,1999:blog-3647227504184400698.post-44374541496750812672014-03-14T09:42:00.000-07:002014-03-14T09:42:29.799-07:00AVAMONSTER!!!<div class="separator" style="clear: both; text-align: center;">
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Ava's signature growl.</div>
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Patent pending.</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/am5aSdwMLEs?feature=player_embedded' frameborder='0'></iframe></div>
<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-19237262858266935252014-03-07T10:24:00.002-08:002014-03-07T10:25:30.203-08:00How To Sleep With an Octopus<br />
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<span style="font-family: Georgia, Times New Roman, serif;">Bedtime has become a bit of a tangle these days.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Not that it's anybody's fault. Ava still happily adheres to her sleep schedule, receiving her night-night kisses and going down with a minimum of fuss each evening. She's developed a funny rhythm of babbling herself to sleep while she rubs her tiny pink fingers across the mesh wall of her bassinet. That scritch-scratch, scritch-scratch has become a comfort sound to both Daddy and I, signaling to our weary brains that it's time to find a haystack and put down our horns.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">And so we do. Or rather, we begin to.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Birdbaby usually succumbs to the sandman first, then I follow suit, leaving Daddy to stare at muted reruns of The Big Bag Theory on our tiny television until, hours later, he miraculously forgets that he's awake and falls asleep. Then it's my turn to startle to the sound of Ava's every mumble and shift very hour on the hour.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Between the pair of us, I think that Jason and I were so nervous about her oxygen and pump lines wrapping around her neck while we slept in oblivion, we had accidentally developed a schedule between us that kept at least one of us responsive at all hours. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">And so you can imagine the excessive caffeination and droning on about "braaains" that ensued during our accursed daylight hours. I also began to notice that Ava was beginning to expect a reassuring pat on her booty every time she whimpered in the night. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">In short, we no longer liked the night life. We did not care to boogie....on the disco round.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Yeah.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Now let me tell you about the modern miracle of tape.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">After all of this ill-tempered flip-floppery, one of us became desperate enough to get smart, and the other one of us got pushy enough about dietary supplements for us to both get our sleep cycles sorted out.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Jason had the brilliant idea of running Ava's oxygen line down the length of her back, away from flailing arms and prying fingers, and affixing it loosely to the ankle of her pajamas with medical tape. Her G-tube line usually runs in a similar direction out the bottom of her pajamas, and we loosely take up any extra length with a hair clippie affixed to the end of her bed. That way, no extra slack is snaking around, but if she pulls it, it will give a little and not cause her to shriek in pain. Sometimes, for good measure, I even throw a heavy baby blanket over the lines at her feet so they'll be less likely to form loops that wrap around her tiny feet as she performs her somnambulistic circus.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Once we felt reasonably assured that Ava's safety was reasonably secured, Daddy and I began taking the appropriate amounts of melatonin to reestablish our sleep cycles. For me, that meant a wee itty dose. For the coffee gobbler lying next to me, that meant... More. But we still found that we could wake up (albeit a bit cross-eyed) if the need arose to let out an insistent dog or soothe a midnight baby gas attack. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">After three nights of healthy sleep, I am pleased to report that we are looking less like the Addams family and more like..... Oh, I don't know... The Beverly Hillbillies?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">As long as we look healthy and rested, highwater pants and a rope for a belt seem fairly inconsequential.</span></div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-24923054975114823392014-02-28T08:42:00.000-08:002014-02-28T08:42:51.865-08:00Big Bow Wrestling Match!<div style="text-align: center;">
<span style="font-size: large;">Mommy wins.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Every time.</span></div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com1tag:blogger.com,1999:blog-3647227504184400698.post-90186254589429360242014-02-25T22:42:00.002-08:002014-02-25T22:44:17.923-08:00BOOP and POOP!At thirteen months, Ava can:<br />
<br />
...blow you a kiss and exclaim, "BOOP!"<br />
<br />
...spray her baby food all over me in a continuous succession of raspberries (PFFT! PFFT! PFFT!)...and understand by Mommy's reaction that she's NOT SUPPOSED TO DO THAT.<br />
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<a href="http://4.bp.blogspot.com/-cC097njTD4g/Uw2LM8ENO5I/AAAAAAAAD50/6caBXkiz5PI/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-cC097njTD4g/Uw2LM8ENO5I/AAAAAAAAD50/6caBXkiz5PI/s1600/image.jpg" height="320" width="239" /></a></div>
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....holler her new favorite word at choice moments, say, in the que at Walmart or during therapy: "POOP!"<br />
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<a href="http://1.bp.blogspot.com/-ikMWSEtFtuk/Uw2LM-6C56I/AAAAAAAAD54/HvOCVM2Fvgc/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-ikMWSEtFtuk/Uw2LM-6C56I/AAAAAAAAD54/HvOCVM2Fvgc/s1600/image.jpg" height="320" width="239" /></a></div>
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...place block, balls, or rings in, out, and off of anything she's playing with.<br />
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...pet Honey Boo Boo Dog without tearing Honey's ears or lips off.<br />
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<a href="http://3.bp.blogspot.com/-51-7Gg9sXOo/Uw2LUW2HfdI/AAAAAAAAD6g/B2rW6FbNhA0/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-51-7Gg9sXOo/Uw2LUW2HfdI/AAAAAAAAD6g/B2rW6FbNhA0/s1600/image.jpg" height="239" width="320" /></a></div>
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...appreciate vegetables as much as (and maybe more than) fruits. (This makes Mommy SUPER happy.)<br />
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...play a made-up note-by-note melody on her toy piano. I call this her One-Note Sally act.<br />
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<a href="http://4.bp.blogspot.com/-YkrPtmloxOE/Uw2K5WCiQgI/AAAAAAAAD5Y/wmxKf2gGEYA/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-YkrPtmloxOE/Uw2K5WCiQgI/AAAAAAAAD5Y/wmxKf2gGEYA/s1600/image.jpg" height="320" width="239" /></a></div>
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<a href="http://2.bp.blogspot.com/-lSjWLlOXHHs/Uw2K55KsEII/AAAAAAAAD5c/FWrZS1vXNno/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-lSjWLlOXHHs/Uw2K55KsEII/AAAAAAAAD5c/FWrZS1vXNno/s1600/image.jpg" height="320" width="239" /></a></div>
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<a href="http://1.bp.blogspot.com/-nFcXp36J-HE/Uw2K53JDO1I/AAAAAAAAD5g/puwdDHgOvmw/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-nFcXp36J-HE/Uw2K53JDO1I/AAAAAAAAD5g/puwdDHgOvmw/s1600/image.jpg" height="320" width="239" /></a></div>
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...carry on a babbley conversation with Daddy when she greets him at the end of his workday.<br />
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...roll anywhere she wants to go. And I mean ANYWHERE.<br />
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<a href="http://1.bp.blogspot.com/-K4jwGykjorI/Uw2LN1MIJuI/AAAAAAAAD6I/fLix8io1Pz4/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-K4jwGykjorI/Uw2LN1MIJuI/AAAAAAAAD6I/fLix8io1Pz4/s1600/image.jpg" height="320" width="239" /></a></div>
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<br />
...sit up with a teensy bit of assistance holding her legs down. Girl got abs like Janet Jackson. (...used to.)<br />
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....say "Dada", "Booboo", and "alligator". (Once. I swear. Perhaps on accident.)<br />
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...make marks on paper with a crayon. They kind of look like cerulean blue gnats. <br />
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...laugh so hard she makes herself hoarse.<br />
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...make me cross a room to pick her up and hug her for no particular reason at all.<br />
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<span id="goog_38487927"></span><span id="goog_38487928"></span><br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-83773634122255078282014-02-21T10:41:00.002-08:002014-02-21T10:41:57.691-08:00Frost.<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-size: 18px; line-height: 24px;"><span style="font-family: Georgia, Times New Roman, serif;">Nearly every morning, I wake up before everyone else in the house -- still in the habit of keeping banking hours, I suppose -- and I pass quietly through the house, sipping coffee, doing chores, blogging, etc. But each of these mornings, I always end up standing in the bedroom doorway, watching Ava and Daddy sleep.</span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Maybe now that events like hospital stays and doctor's appointments have become less frequent, they've faded and flattened into the record of our past, no longer expected to pop up when we wake up and turn another page. We have appointments, but not so much the kind of worried meetings we would sit through with this or that specialist. Our goals for maintaining Ava's health and well-being seem more commonplace, and therefore less insistent: keep her lungs clear, make sure she's receiving enough oxygen at night, help her learn how to crawl, thinking of new foods for her to try, etc.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Over the past few months -- perhaps even more so since she's turned one -- our lives together have bloomed, taking their cues from her growing sense of self. Our everydays are no longer thought of as rigidly charted blocks of time. They stretch to contain unhurried shopping trips after therapy, moments stolen on park swing sets, family lazy snuggle time on the couch, and all the things we imagined doing as a family from the moment she was conceived. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Sometimes life doesn't turn out the way you want or expect it to.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I've come to realize that in my case, this has been The Best Thing.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">If I'd never slept in a sparse, impersonal apartment on my own, I'd might never have appreciated the time I spent with my family, no matter if it was in a nursery or in a hospital room.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">If I'd never had the opportunity to be with family during dire hospital stays, maybe I wouldn't have been so calm when surrounded by wires and nurses and alarms day after endless day.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">If I'd never had role model parents in my family who actively enjoyed raising their children no matter what their child's needs were, maybe I wouldn't be so immersed in the joy of teaching and caring for our daughter.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">If I was rushing around in the morning getting ready for work, fretting about my makeup and shoveling pop tarts and caffeine in my face, I wouldn't be standing here watching my family, my beautiful, wacky, trying, dearer-than-life family, sleeping peacefully as the winter sun creeps into the room like bright white frost. The moment freezes. A shutter snaps. I collect the moment, store it away for the sake of my own secret pleasure. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I could watch them forever. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">But I'm not.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I'm going to jump in their faces and kiss and tickle them and give them coffee and milk. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">( I would assume you'd guess who's getting what.)</span></div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-52150607788798252642014-02-17T09:53:00.001-08:002014-02-17T09:53:29.364-08:00Fart Me to Sleep!<div class="separator" style="clear: both; text-align: center;">
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-75389458929525625622014-02-13T09:20:00.000-08:002014-02-13T09:20:56.789-08:00Dolly Smoosh!<div class="separator" style="clear: both; text-align: center;">
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I've noticed Ava playing differently than she used to.</div>
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Before she turned a year old, her concept of fun was to bang things together to make noise, or to gum it into submission.</div>
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I just noticed last night that she's kinda starting to play like a little girl....</div>
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...if that's what you can call walking your Mooshka Tot dolls around by their pigtail nubs and pretending they're saying, "Dep dep dep dep dep dep yyyyaaaaah!"</div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-45558869021270187442014-02-04T21:44:00.001-08:002014-02-04T21:44:18.051-08:00Clarifying.<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Streeeeetch....okay, let's do this!</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Let's talk about some things I often skirt around in polite conversation.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Let's discuss how we view individuals with Down Syndrome.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I'm not interested in stoking a row over semantics. I'm not here to be the disability police, or to legislate out language that makes me uncomfortable. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">My lone objective today is to challenge you to think about your communicative intention when you speak of the subject. As in, understand what you're saying, and in turn, say what you mean. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">First, a biology lesson: </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">A diagnosis of Down Syndrome -- also referred to as Trisomy 21 -- is defined by the presence of an extra copy of the person's twenty-first chromosome. A geneticist can show you a lab test of Ava's chromosomes and point out where there's an extra little squiggle next to the pair marked XXI.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Either you have an extra squiggle, or you don't.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">You can't "catch" it like a virus. A person's appearance or IQ has no bearing upon their status as a man or woman with Downs.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">You can't have a "case" of it, and there is no "better" or "worse" of it. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">It just IS.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">There are visibly identifiable traits shared by many individuals with Down Syndrome. I see them as "family" traits they share with their brothers and sisters with Downs, which I think is something to be appreciated in and of itself. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">There are those shared by most -- the unique shape of their eyes; their lower-set ears which perfectly offset a sassy little ponytail; the single, long crease that runs across one or both palms; the extra space between their first two toes which make them model flip-flop wearers.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">And now to bring up the nervous elephant in the room: when it comes down to the way that intelligence is measured, I think the Downs community gets the short end of the stick. The way I see it, there are many different kinds of intelligence, and if yours is not the type that produces some measurably marketable product or service, you are treated as a less valuable member of society. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">If their intelligence is best expressed through the arts, or interpersonal relationships, or spiritual wisdom, most folks will still count them out because they are blind to their contributions to the community. It's true. You know it is. I know it is. We're not as appreciative of the differently-abled as we'd all like to believe we are, as if living in a world full of unique folks is all lollipops and rainbows and we're all standing around holding hands and singing at the Michael Jackson Superbowl Spectacular. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Whatever. Let's just all admit we sell them short because as a group, we place such value on each child's earning potential, which is more often than not linked to measurable academic performance.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">But how many so-called intelligent people do YOU know who drive themselves bananas because they can't be everything they're expected to be?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Sometimes having limits can give you valuable focus on what you CAN do.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">While I can't prove that ALL individuals with Down Syndrome have unlimited capabilities, I can confidently claim that the same is also true for the rest of us. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">And just because you're capable doesn't mean you're making the most out of what God gave you, and doing the rest of the world much good in the process.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I can't recall a tenth of the drivel I regurgitated back to my teachers in high school in order to earn decent grades. I slouched and slept my way through most of my classes, fully expecting the world to lay itself at my feet when I graduated. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Does that mean that I've grown up to be a productive member of society?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I'm much less of one than I should be, and that's no one's fault but mine.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Our daughter, on the other hand, applies herself with fierce determination when she holds a goal in mind. She figures out her own ways around her muscle tone issues in order to play the way she wants to. She can follow directions. She flirts. She poses. She knows when someone is sad, or when someone is silly, and reacts empathetically. She is learning that Momma don't take no sass when she begins to throw a tantrum, because she now recognizes Mommy's Stank Eye.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">She just turned one.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">While I can't justifiably speak for the Downs community as a whole, I can stand up for my kid and shout, "Yes! She's different from most, and thank God for it! She'll probably accomplish more of the work He intended her to do!"</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">We needed some fresh perspective around here.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">We needed to remember that slower isn't worse. On the contrary, it's often more thorough.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">We needed to stop pointing to digitally enhanced, surgery-sculpted public figures as our standards of beauty.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">We needed to be reminded of what it feels like to TRY with all our might.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">And we needed to recognize the value of another's insight, especially if they experience the world differently than we do.</span></div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com1tag:blogger.com,1999:blog-3647227504184400698.post-83314948675034182412014-01-29T17:16:00.001-08:002014-01-29T17:16:07.057-08:00Music vs. Mommy<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">Music vs. Mommy</span><br />
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If you know me personally, it's probably not hard to tell that I'm going through a strange season.</div>
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It all began when a friend of mine unexpectedly passed away at the beginning of this month. </div>
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I was sent out to meet him at his guitar shop when I was a teenager cutting my teeth on my own six stringer. He was older than me -- a couple of years younger than my dad -- but his inherent youthfulness and enthusiasm for a variety of music gave us enough common ground to forge a friendship. He was so supportive of me and believed in my musical capabilities, even when I didn't (which was most of the time). He always made a special place for me to sing on the local radio show he taped each week, and singlehandedly taught me just about every guitar lick that I know (which might not be many, but they're hard-won).</div>
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As I grew older and began pitting myself and my abilities against the world as young people are bound to do, I somehow got the idea in my head that because I wasn't turning out to be the world-class musical genius I aspired to be, I should just hang it up and try to be practical. I'd tried everything I'd dreamed of doing when I was younger -- I'd opened for a few bigger country acts of my time, gigged around New York, been a fly on the wall of some classical composers and musicians who were wayyyy out of my league (and accidentally learned a lot about the creative process), and had come back home where I'd fought through a statewide talent search and earned a chunk of studio time to complete a quality demo.</div>
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During all this, I never stopped to ask myself if I was enjoying what I was doing. It was simply what people expected me to do. Making music was the only thing that made me feel like I was worth the carbon I was composed of. Deep down, though, what I'd yearned for was to have a family, and to be someone's wife, someone's mother. </div>
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When my management at the time told me not to marry Jason because HE was offering me the moon in the form of contract negotiations with Virgin Records, I realized that I'd come to a crossroads: either pull a Robert Johnson and accept the golden guitar he was holding out to me, or turn on the person I loved and trusted above all others.</div>
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I chose Jason, and I pulled back on the reigns of what was about to go down.</div>
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And for once, I made right decision. Jason and I were married months later, and our contact at Virgin had a massive heart attack and dropped his little basket. I hated that; he was a sweet little feller. I hope he recovered.</div>
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Since then, I've had a hard time pursuing music with much gumption; it's difficult to explain to people why I don't "go out and do something with it", as our go-getter society prescribes. I guess that's what kept me from going to see my friend who's now passed away -- I was so embarrassed of anyone trying to treat me like I was special, someone worth being proud of, I couldn't face letting him down when he'd spent so many years building me up.</div>
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Of course I couldn't shut the box on music for good. I still play piano for our church services every Sunday, and I sing when I find a song that I believe is worth sharing. I've written songs for special people's weddings and funerals, and have somehow become the default national anthem singer for Grant County. I truly love doing those things, and applying my skills within my community rather than acting like I've got to escape home in order to feel like a "legitimate musician". Bloom where you're planted, homey.</div>
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But it's funny how these snakes have a way of chomping down on their own tail. Since Ava's come along, the idea of making music a huge part of her life has renewed a longing in me to wade back into the scene and take up where I left of loving the process of making music. When I went to my friend's memorial jam session last weekend, it hit me like a ton of bricks that without neglecting his beloved family, he had still managed to draw so many souls around his campfire and keep the music alive in his life. I looked around at the hundreds of people who came in the door to play a lick, share a story, or sit back and bask in the good vibes that his memory inspired, and realized that I had sold myself short, and in turn, had done the same to my daughter. I wanted her to know her mother as a complete woman, and without the spark that actively playing and singing brings to my life, I had shut down a part of myself that could nourish us both.</div>
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So the next afternoon during her nap, I sat cross-legged on the floor and retuned my rusty Takamene strings. I learned a couple of tunes by The Judds. The day after that, I picked up a handful of new picks and received an invite to an open blues jam. And you know what? I just might show up.</div>
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Can momma sing the blues?</div>
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You know baby bird's gotta get those lungs from somewhere.</div>
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Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-79738399515822063032014-01-21T11:58:00.004-08:002014-01-21T11:58:57.064-08:00Birthday Nuts<div class="separator" style="clear: both; text-align: center;">
<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px; text-align: -webkit-auto;">I feel like I need a plaque for my wall that reads:</span></div>
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"I survived all the self-induced stress and neuroticism that accompanies the planning and execution of our child's first birthday."</div>
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And beneath those words, I would have mounted two tablets of Exedrine.</div>
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I felt we had a LOT to celebrate on her behalf, and I wanted our family and friends to be able to come into a pleasant, tidy atmosphere, have a few bites of something nummy, and delight in watching her play in her new princess ball pit. I figured that's about as complicated as a first birthday party should be.</div>
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Well, the closer the date became, the more pressure I put on myself to make the party funner and funner and FUNNER. We should have a bubble machine! And dangly things on the ceiling! Oh, and since everyone's feeling that post-holiday dietary remorse, I should serve raw veggies instead of sweets.... But then maybe I should clean and cut them myself instead of buying a pre-made tray, because the ones that come like that have a suspicious white film on them. And then perhaps I could create a slideshow, and finish her baby book to display, and find a saddle for Honey Boo Boo Dog rides, and and and and........</div>
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Then the night terrors began. My parental performance anxiety became so palpable, it seeped into my subconscious. I dreamed that on the day of her party, I answered the doorbell at eight in the morning to a crowd of bushy-tailed guests standing around on our front porch. Dream-me panicked, shed my bathroom, and dashed into town in search of an emergency birthday cake. Then my surroundings morphed into my old neighborhood in Lyndhurst, New Jersey, and I managed to get kidnapped by terrorists. When I awoke, Dream-me had escaped her captors and burst into a convenience store where I demanded to use the phone so I could call my husband to make sure HE could get the cake,</div>
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I still had a few minor freak out moments after that night, but I'll admit that put my reactions in clearer perspective.</div>
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<br /></div>
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So I relaxed.... Somewhat. I successfully made Ava's cake myself (even after the first attempt resulted in something that looked like a pink pancake), served teriyaki meatballs and the two best dips that Walmart offered, then set up a few chairs around Ava's ball pit and took a few deep breaths and awaited the doorbell.</div>
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<br /></div>
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You know what?</div>
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<br /></div>
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I had more fun than a flying squirrel in an attic fan!</div>
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<br /></div>
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And judging by the exuberance of her whoops and kicks, I would say that our Tootle did, too!</div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-16675855095999065572014-01-17T11:19:00.002-08:002014-01-17T11:19:56.125-08:00Pork Chops & Opie <div class="separator" style="clear: both; text-align: center;">
<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px; text-align: -webkit-auto;">To raise a child -- whether said child has Downs or not -- is to sign up for a lifetime of constant surprises, I think. Some surprises are awe-inspiring. Some are unpleasant. And some are more far-out than anything Rod Sterling could've ever cooked up.</span></div>
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Looking back at the past week, Ava's first birthday seems to have been a starting gun of a sprint toward maturity. She's suddenly picked up on the series of motions to nursery song her Daddy and I sing to her repetitively throughout our day, even showing an understanding of simple rhythms by clapping in time with us. She's currently attempting to interpret "Itsy Bitsy Spider" through finger motions she can perform. Crap, I'm a fairly dexterous gal, but I can hardly preform the motions smoothly myself! Just watching her attempt to mimic what we're doing tickles the tar outta me.</div>
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On the flip side of the coin, her desire to please seems balanced with a very strong drive to play with what she wants, when she wants. If I'm in the process of changing her and she decides she wants to play with a tube of ointment sitting at the edge of the table, she will roll through whatever mess is underneath her in order to get close enough to swipe that tube. If I try to gently wrestle her back into changing position, she will blast me with those trademark lungs of hers and very often pitch a kicking, shrieking FIT! </div>
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This kinda shocked me the first time she did it. It wasn't that I expected my daughter to be naturally perfectly behaved all the time; I was just shocked that she was already learning to pit her will against mine by throwing a true toddler-style temper tantrum.</div>
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What Miss Tootlebritches didn't count on was this: when it comes to addressing the onset of tantrums, I am of the Andy Griffith school of parenting. I just looked on calmly while she whipped herself into a frenzy, waited until she looked over AT me to check and see if I was waiving a white flag yet, and then calmly asked her, "Whatcha doing?"</div>
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<br /></div>
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She'd wail and give her best forehead-wrinkly Beaker face.</div>
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<br /></div>
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I cocked an eyebrow. </div>
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<br /></div>
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She'd give one final holler. "MEH!"</div>
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<br /></div>
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I'd say, "Just let me know when you're done."</div>
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<br /></div>
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*snif*</div>
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<br /></div>
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And then I'd wipe two little tears from her red eyelashes, sit her up, and kiss her when she was calm again. Then I'd put whatever she wanted back where it was --even if it was within her reach -- just so she could learn that there are some things she will have to learn to resist just because Mommy Said No.</div>
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<br /></div>
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Seems to work pretty well so far.... All the better if she's well-rested.</div>
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<br /></div>
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To balance out all this, she's become....well, I wouldn't say picky about food, because she'll try almost anything on MY plate. She absolutely will not tolerate baby food anymore, as of this week. She'll eat veggie bits, pasta, freeze-dried fruit, tomato bits from chunky salsa, cereal, and paper napkins, if we're not careful. But she won't allow me to put a spoonful of baby mush in her mouth, even if it's laced with ThickIt. She gags something pitiful, then puts her foot down by refusing to unhinge her jaw for anything other than what she can pick up and place in her mouth herself.</div>
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I secretly think that once she got a mouthful of MawMaw Mills' cooking, there was no turning back. She's been begging off little bits of marinated pork chop and butter beans ever since. This quick shift to big people food just shocked me. Makes me nervous, of course, so I chop and shred everything into wee bitty bits, but of all the food she tries, she unconcernedly rolls it around in her mouth, giving it all a thorough gumming before she swallows. </div>
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For someone without a tooth in her head, she sure can tear up some pig.</div>
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<br />Anonymoushttp://www.blogger.com/profile/01218126679955383361noreply@blogger.com0tag:blogger.com,1999:blog-3647227504184400698.post-59807709088513898722014-01-14T18:52:00.002-08:002014-01-14T18:52:46.032-08:00The Yearling<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); font-family: Georgia, 'Times New Roman', serif; font-size: xx-small; line-height: 24px;">One year ago, our daughter was born.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">I've rehashed the scene in my memory over and over through the past twelve months, still in awe in of What Was, in consideration of What Was Feared.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">A week and a half before Ava was born, a clear-sighted perinatologist brought up her floating form on an ultrasound screen and confidently suggested that her heart was whole, yet turned on its axis. And that, coupled with a constellation of other symptoms, pointed to a probable diagnosis of Downs Syndrome. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">I wondered if we have been the only parents who prayed in favor of an extra chromosome. When faced between the possibility of a suspected heart defect or a heart turned on its axis (fooling all prior ultrasound interpreters), the preference seemed clear to us. We begged God for her bodily wholeness. Let her be whomever You mean her to be, we prayed, but please spare her the pain of multiple surgeries. I think we feared the capability of a surgeon's hand more than we feared the variety in God's creation.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">And a year later, here we all are -- a bit shorter on sleep, but much longer on patience and joy. Our daughter has grown to become delicately beautiful and deeply intelligent in ways we still cannot wrap our minds around. She is willful, bold, good-natured, socially sensitive, curious, temperamental, silly, musically inclined, and all the best parts of her parents and grandparents. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">And she is our </span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: xx-small;">Cheeks. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; font-size: xx-small;">Chunkle Monkey. Sweetfeets.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Moon Pie. Pooter Scooter. Toot. Cutie Booty.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Little Tree Frog. Spider Monkey. Baby-in-my-mirror.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Messy Bessie. Silly Millie. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Snuggle Buggle. Sugar Pie. Doodlebug.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Baby CRAZYGONUTS!</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Mama's Baba.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Big Squirrel!</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Darling child.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Ours.</span></div>
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