Archive for the ‘Food Allergies’ Category

Mindy and Taya are beautiful, healthy little girls who happen to have Down syndrome. Within the next two weeks, both girls will celebrate their 4th birthdays.

Mason celebrated his 4th birthday last August. We took him to Chuck E. Cheese, which is the surest sign that a parent loves their child. I wouldn’t suffer through three hours with the Big Gray Rat for some kid I just liked okay.

In case you don’t know, Mason can’t tolerate corn in any form or amount. Makes him terribly sick. So I made corn-free cupcakes to celebrate the occasion. Sounds easy enough, right? I mean, when’s the last time you saw a cupcake recipe that called for a cup of corn? But corn is sneaky and subversive. Down right evil. Corn is found in vanilla extract, baking powder, and powdered sugar. It sneaks into the eggs and milk of corn-fed livestock.

Are you wondering how Mason liked his cupcakes?

That is The Daddy using his mad persuasion skills on the Mason-cupcake situation. It is also Mason using his mad resistance skills on The Daddy. Like so much of a mother’s work, all of my effort on the birthday cupcakes went unappreciated. He really dug the candles though, and the whole “hey, everybody’s singing to me!” thing. He enjoyed tearing the wrapping paper off boxes and then throwing the boxes onto the floor. And mostly, he loved running around and being a kid spending his birthday at Chuck E. Cheese.

Birthdays are awesome.

Unless you’re a Russian orphan with Down syndrome.

Mindy won’t have cake or presents when she turns 4. Nobody will sing “Happy Birthday,” she won’t puff out her cheeks trying to blow out her candles until her big brother or sister finally helps her out.  Instead of cards, she’ll get transfer papers. And instead of a trip to the pizza parlor, Mindy will take a one-way trip to a Russian mental intitution, where she will live out the rest of her short life in squalor, surrounded by the rest of the people that her society wants to forget even exist.

The morning after his 4th birthday, Mason woke up to the sound of his big sister beckoning him to come play with his new toys. Shortly after her 4th birthday, Taya will wake up to the shrieks of her desperate fellow inmates, groaning in misery. Mason got hugs and cuddles and wide-eyed comments of “My, you look older today Big Boy!” Taya will spend her entire day in a metal crib, without so much as a smile cast in her direction.

Don’t take my word for it….

Click here to watch the Today Show video of what life is like in one of these institutions. 

As I type this, Mindy has 5 days left. Taya has 11. Mere days until their lives go from pitiful to horrific. I pray that their forever families find them before it’s too late. And I pray that they won’t let finances stand in their way. Nearly all of the adoptive families I’ve met through Reece’s Rainbow had to raise the funds for their adoptions. Very few of us have the extra money sitting around.

Please, if your heart breaks for these precious children, if you cry for them, if you wish you could do something…

…do it.

Find out more about Mindy and the other angels of Reece’s Rainbow at the Reece’s Rainbow website And by all means—if you want more info, LEAVE A COMMENT! I read each and every comment, and I can hook you up!

“Oh, I’m so sorry….”

No, that’s not what people say to The Hubby when they find out he’s married to me. It’s the response that often follows the sentence, “My child has Down syndrome.”

I’m not here to chastise anyone. I mean, before I had my own little Flexible Flyer, I might have said that a time or two. After all, society tells us that it’s such a tragedy.

And it was, for a time, back when I lived out a lifetime of fears inside my imagination. But it quickly became apparent that I’d been sold the proverbial bill o’ goods, that the people who told me how terrible Down syndrome was had no idea what they were talking about.

I realize it’s still hard for a non-Downs parent to conceptualize. Having 3 non-Downs children myself, in addition to the velcro monkey, I feel qualified to put things in perspective for you. So here, in no particular order (why do I always feel the need to say that? As if you people would honesty expect anything resembling “order” to spring from a blog titled “Chaos Diaries.”), I give you 10 things that are more tragic than Down syndrome.

1. Having a run in your pantyhose

2. The thought that gas prices might rise above $3 again.

3. The fact that I didn’t get my Christmas tree down until after Mothers’ Day, and it’s almost time to put it up again.

4. Baking a hot, fresh loaf of bread–and then finding you’re out of butter.

5. Opening the jewel case of your favorite CD to find that last time you played it, you took whatever was in the CD player at the time out and stashed it in this case—and now you have no idea where your favorite CD is.

6. Having to vent your dryer out into the laundry room because the plumbers who ran the ductwork thought running the duct up through two stories and an attic out onto the roof would make infinitely more sense than running it 6 inches through the exterior wall, so now it’s always clogged and your dryer takes 3 hours to dry (and even then it doesn’t dry, it just slighty-less-wettens), and poses a fire hazard, so now every time you want to dry a load of clothes you have to open the window (which happens to be over the cat litter box) and prop the box fan in it to suck the hot, humid air out, because as posh as the idea of having an in-home sauna sounds, “black mold eradication” isn’t quite as sexy.

7. Peanut allergy. Especially when your 5 year old rushes into your arms crying after school, because one of her friends grabbed her hand on the way out of the classroom and of course, they ate PB&J for lunch and now she’s afraid she’s going to die any minute.

8. Traveling with 4 children.

9. Going to SuperTorture with 4 children

10. Being 14 years old and spending an hour flat-ironing your hair, only to walk outside in the humidity and have it frizz (which, according to my 14 year old, would also make it onto a list titled: “Things that are more tragic than the end of life as we know it on this planet).

I could go on forever. Seriously–you know I could. And what’s more–I bet you can come up with a few of your own. Leave me a comment, and let me know what things in YOUR life are way more tragic than the fact that you have a child with Down syndrome.

So the traffic clears, and now I’m explaining to the children that Elvis Presley did NOT sing Purple People Eater when I look at the clock and realize that because of our lunch stop at Chuy’s (I should really be getting some kind of kick-back for the promo) and the traffic jam in San Antonio, our five-hour drive from Austin to The Valley is going to take us eight hours. IF we don’t stop for potty breaks along the way (quit laughing–it could happen). Lovely….

Three pit-stops and 4,863 choruses of “Well I saw the thing comin’ outta the sky” later, we pull into the in-law’s driveway. The kids are bouncing with excitement to see their grandparents. So am I; my in-laws are awesome! I just wish they lived, well…somewhere else.

Every year as we prepare for the trip, I ask The Hubby to please talk to his dad about throwing some bromine tablets down into their cistern to kill the mosquitos. See, they have this old cistern left over from the days when there were no city services in their neighborhood. It serves two purposes: one, it makes my MIL’s yard an oasis of greenery in an otherwise barren landscape, as the ivy and various flora thrive on the moisture; and two, it provides a never-ending source of mosquitos. So this year when The Hubby finished talking to his parents on the phone, I asked not-too-optimistically, “Did you talk to him about the bromine?” He forced a smile and answered “Dad said there aren’t any mosquitos this year.”

Which would be great, except there are never any mosquitos any year. Until we get there, evidently. In the time it takes us to get from the driveway to the living room, Ethan already has six angry red welts rising up on his limbs. I assure him that my incredible mommy-foresight has led me to already write “Caladryl” on our shopping list for tomorrow.

The next day we head out for Torture. I mean Target. Although when you have four kids in tow, there’s really not much difference, is there? The Hubby tries to convince me to settle for the much-closer Wail-Mart, but I hold out. Then we pass a brand-new SuperTorture only a few miles away. I’m ecstatic–SuperTorture is way better than RegularOldTorture. Too late. The Hubby’s internal GPS is set on the old Torture, and resetting it to turn left HERE instead of continuing on 7 miles, exiting, turning right, and winding through three parking lots is only an option with the upgraded model. Which is, of course, out of the question (because this model is really, really cute). I smile. I’m on vacation. No worries, mon.

Now, the whole reason for the shopping trip–which is an annual tradition in and of itself–is that when you travel 560 miles for 10 days with 4 kids and 3 food allergies, you need your own food. Food that is available at SuperTorture. But not at RegularOldTorture. Horizon Organic Milk, people–is that too much to ask? Yes, yes it is…. I scrawl my list of “everything-I-couldn’t-find-and-will-have-to-run-to-Wail-Mart-for” in the margin.

As far as my children are concerned, the only reason to step foot inside a retail establishment is if there is the promise of visiting the toy department. The other 127,000 square feet are just wasted space. The 5 year-old is bored and wants to know when we’re going back to grandma’s. The 10 year old is angry because I won’t let him have a soda. The 4 year-old wants my undivided attention, and to get it he starts pulling clothes off of the racks onto the floor. And all the while they are narrating, soundtracking, and announcing. So my head is filled with “This is boring. When are we going to grandma’s? Why do we have to be here? Can I have vanilla milk? Look–that sign says….” and “bip-bip-bip-bip-bip-dee-dee-dee-dee-dee-dee-POP! POP! POP!” and “Mama…mama…mama…mama…mama…”

And they’re following me….

By myself, I have a hard time staying on task. You may have seen me in the grocery store–I’m the one talking to myself: “tomato sauce, cheese, Triscuits…tomato sauce, cheese, Triscuits…tomato–oh look, yogurt’s on sale!” Armed with a list I am still unable to achieve higher than a 87% task-completion rate. Add 4 children to the cart and I’m done for.

So by the time we’ve covered the whole store, I am a nervous wreck. Mason has messed up my hair and pulled off one of my earrings. Twice. The Soundtrack is fed up with The Narrator and is telling her so. The crease that runs down the bridge of my nose is deeper, and the left corner of my mouth is twitching uncontrollably. Then Mason decides he doesn’t want me touching HIS shopping cart, and procedes to pull my hands off of the cart handle shouting “NO! NO! NO!” At this moment, I am thinking what a waste of space having a Starbucks in Target is, and how much more relevant a tequila bar would be. A tequila bar with drop-in child care.

Ethan, my 10 year-old with a heart-o-gold, takes a break from fighting with his sister, steps up to the plate and says “Mom, I’ll push the basket for you.” That might be just what I need. I cede cart duty to my son and proceed to precede the basket.

It is worth mentioning at this point that one of the hallmarks of Down syndrome is “ligament laxity.” Basically, it means that their joints fit together loosely. In practical parenting terms, it means that they have the ability to reach behind them–far behind them–without rotating their trunk, enabling them to grab objects undetected. Objects like, oh…I don’t know…let’s say a six-pack of Sam Adams.

CRASH! Glass breaking, beer splashing, the other three kids screaming. Chaos. Complete and utter chaos. Except for Mason. He is a little island of tranquility, intently watching the reactions of the rest of his family. And why not? His work here is done.

A sea of red shirts descends upon our chaos with rags and mops and buckets. Which is kinda funny, because The Hubby is actually wearing a red shirt, so I’m sure passersby think he’s a slacker-employee, watching the rest of his teammates work while he watches. But I have to admit, the only thing I was thinking at the time was that only five of the six bottles broke, and since they weren’t labled for individual sale they were going to have to toss that last one anyway, so would it really be inappropriate for me to ask if I could have it? Because at this point I really needed it….

Next time: The actual reunion: Mason chasin’ and the rules as they apply to marriage and concussions….

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