Has the Onion Gone Too Far?

I am not a fan of dark humor. This is mainly because, well yeah, it attempts to make jokes of things that most people find hurtful or offensive. Ridiculing illness, poverty, injustice, natural disasters, oppression, and the like, is just not my cup of tea.

So you can probably guess that I am not a regular reader of the Onion. To their credit, they do post some funny stuff that does achieve the goal of good satire by poking fun at politics and other scandalous matters. These articles usually make it to Facebook and I have been known to give them a click.

That is sort of, but not exactly, how I came upon the Onion’s 2013 Holiday Gift Guide. In this case, a furious friend and fellow advocate posted it to a FB group I am in because this time they hit too close to home. The gift list includes petrified dead babies from Pompeii, terminally ill dogs, prosthetic legs for dads who have lost theirs, and white babies that *might have Down syndrome.

While I was checking out the offensive post, I noticed that the cover page post was a tasteless piece reporting on how “thousands of Americans will notice the first signs of dementia in their parents this holiday season.” Hardy ha ha ha, that is so funny, not. After poking around the archives for a while, I found lots of similar not so funny posts.

In fact, if you do a search at the Onion on Down syndrome you come up with plenty of insulting and dehumanizing posts. Back in ‘08 they even referred to Sarah Palin’s son Trig as retarded. If you want to bitch about an Onion post, well folks start there.

The Onion’s 2013 Holiday Gift Guide is not funny, not even the parts that have nothing to do with Ds or dying dogs. But this isn’t THE post where they went too far. That happened long ago. To read that gift guide post, and only complain about the fact that Ds was mentioned feels wrong to me, like maybe you think the rest of it was perfectly fine. I doubt the children of wounded warriors whose dads are just getting used to their new legs or the people whose dogs really are dying right now agree with you.

My point here is that the Onion is in the business of being offensive. It is dark humor. And listing a white baby who might have Ds for sale is just one of the many offenses on that list and on that site. If you want to cry foul, then maybe you ought to scream it from the top of your lungs for more reasons than just Ds. And maybe you should stop reading the Onion and stop buying from their advertisers. Write an email to the Mormons and tell them that buying ad space there rubs you the wrong way.

I sent an email to the Onion’s CEO Steve Hannah letting him know that I thought the majority of the list was offensive. Then I let him know that people with Ds have it hard enough without “funny” publications like the Onion making their hill even higher. I also informed him that $1275 is a ridiculously dirt-cheap figure for a white baby with Down syndrome. We paid $27,000 for ours. I am sure my note ended up in the trash folder along with thousands of other emails complaining about thousands of other hurts.

If you feel like writing to the Onion to let them know that Ds is not something to make cruel jokes about, please do: publicfeedback@theonion.com.

And, if you have $1275 you want to spend (or even $5) on giving the gift of a baby with Down syndrome, please check out my friend Nykki’s donation site. She has had a certain little man with Ds on her Christmas list for quite some time now.

A Signed Copy of Sun Shine Down Goes To...

Between when I reviewed the book, Sun Shine Down, and when I pulled the winner, I talked to the author Gillian Marchenko and she agreed to sign the winner’s copy of the book. How cool is that?

And that winner is Amanda, #3 on the comment list. If you would email me your complete name and address at ds.mama (at) yahoo (dot) com, I will pass it along and your prize will be on its way to you.

For those of you who didn’t win, contact your local library and ask them to carry a copy. That way you and many others can enjoy the read for free :-)

Mom, You’re a Hypocrite

That is what my ten year old son said to me as he walked out the door on his way to school one day last week. Ouch, it stung a little. Let me tell you what happened and you can decide if he is right.

In an effort to raise my kids as non-sexist as possible, I encourage them to make choices about toys and whatnot based on what they like, not whether it is made for a boy or a girl. When we go through McDonald’s drivethru for happy meals and the speaker asks, “Boy or girl toys?” I answer with the question, “What are the toys?” After hearing the options the boys decide what they want, and sometimes it is the girl toy.

When the boys lined up behind Masha and Autumn to get their nails painted a couple weeks ago, I gave them several colors to choose from and daddy painted their nails right along with their sisters’. You might even recall that a few years ago I bought my oldest son a pocketbook and he took it to school on and off for a couple weeks.

I know that my boys have gotten chastised by their peers for their gender-bending. While the purse still hangs in the Gecko’s closet, filled with hidden goodies, he no longer takes it out of the house. Jade came home from school after wearing the nail polish and told me that the girls in his class told him that he isn’t supposed to wear nail polish. That night, after boy scouts, I asked him if anyone noticed and he said that a boy laughed at him and called him a girl. His answer? “No, I am still a boy and I am my own person.”

It is hard to let them make their own decisions about this stuff knowing that the odds are they will be made fun of, but it feels worse to force them to comply with our society's unwritten gender rules. Actually, it feels so asinine trying to explain why they can’t wear nail polish or carry a sleek bag with lots of pockets that I would rather they just do what they want.

But then I blew it.

Masha has an awesome winter coat. It is thick, plush actually, with stitching on it that looks swirly. The hood and sleeves are edged with faux fur of the same deep blue color as the rest of the coat. She looks all set to travel to Alaska every time she puts in on. She hates it. She really really hates it and refuses to wear it. I had to swap it out with a lighter-weight suede coat.

On that morning, she once again refused to wear her awesome coat and Jade piped up, “Can I wear it mom? I love her coat.” And I said, “No.” Then I pushed him out the door with his handsome navy and yellow winter coat. Gecko was stuffing his backpack while this was taking place. He was the last one left in the entryway and on his way out he said it: “Mom, you are a hypocrite. Aren’t you the one who is always telling us it doesn’t matter if it was made for a boy or a girl; you can choose what you like?”

My brilliant comeback was, “Just go to school, okay?”

I’m making up for it though. A certain little somebody wants an Easy Bake Oven for Christmas, and he’s getting it.

Sun Shine Down - Review & Giveaway

I like books that can make me cry, and true stories - memoirs - that make me cry are even better. In fact, if you write a memoir and I read it and don’t cry even once, then I wonder what the heck you wasted my time for. If I borrow your life for a while, I want to feel something I have never felt in my own. Sun Shine Down by Gillian Marchenko accomplishes that. And considering I have lived through my own birthing of a child with Down syndrome, that was no easy feat.

Gillian is an American married to a Ukrainian and living in Ukraine when she gives birth to their third child, a girl with a surprise diagnosis of Down syndrome. The birth itself was traumatic and the aftermath was even worse. Gillian found herself in the inbetween space of wanting to, and knowing she is supposed to, love her baby and not quite being able to. She is both physically (the newborn is in the NICU for weeks) and mentally separated from her child. Her story is one of how she found her way to loving Polina.

I think most people take loving a baby for granted. You just assume it comes naturally, and in most situations it does. But sometimes when our expectations clash with our reality, love does not come easily. Gillian turned to many outside sources for support. Some good, some dangerous. The book is very honest about her sorrow and depression (which she was always prone to.)

The book is a little shorter than your average memoir, but I actually appreciated not having to wade through her whole life history or every needless NICU detail. She focused on the things that mattered, and she writes about them so artistically that I could not evade feeling what she did. Most Christian writers (Gillian is a born again Christian married to a pastor) can’t help but let their faith drive their narratives, but not Gillian. God was in the book but he wasn’t the “fix.”

The climax of the story is obviously that Gillian falls in love with Polina and even though you know it has to come sooner or later, when it does you’ll get chills and you might just find yourself crying again. In most stories, the resolution is the last thrill you get, but not in this story... Gillian included an epilogue that brings you back to Ukraine where you get to meet the girl who will become their fourth daughter. Those last paragraphs left me wanting more from her.

If you are looking for a good read to curl up with this winter or a great story to give as a gift to your favorite reader, Sun Shine Down will do the trick. If you’d like to score a free copy, leave a comment below. I will pick a random winner in a week or so.

The Family Portrait

I am a scrapbooker. It’s an addiction. But, no matter how much I do it (and have done it for over ten years) I am never caught up. The other day I was working on layouts from a family cruise that we went on back in 2001.

My dad took us. He took us all—his mother, his aunt, all his children, all his grandchildren—on an 11 night cruise to the deep Caribbean. One of his brothers also came with his wife and children. At the time, my husband and I only had one child, his daughter TK. She was about 8. It was a wonderful vacation filled with visits to beaches, and ruins, and jungles, with giant blue butterflies and slippery stingrays.

One of the things I love best about cruises is formal dinners every night. I love dressing up. Look at us, lol, we look like the Addams family.



There is another photograph, a family portrait taken of the whole group of us together. It was that particular picture I was scrapping when a thick sadness overwhelmed me. I wanted to print all the names vertically on vellum paper to stick next to the photo. As I was staring at the faces, typing the names, it struck me how broken and gone my family is.

The greats and grands in the photo have since died. I adored my grandmother, and I still miss her. But, old ladies dying in their nineties is not the sad part. Divorce is the sad part. There are people missing that I loved. They were my family and they are no more. And because the wife is gone, so are her children. I showed the picture to my sons and neither of them could name half the people in it.

If that picture had been taken ten years earlier, there would have been a different step-mother for me and a bunch of other step-siblings. Going back even further, there would have been still another step-mother, another aunt, and different cousins... Divorce has divided me from my family since I was a year old and my parents divorced. My paternal grandparents are divorced. Every one in my parents’ generation (both sides) is divorced, some more than once. My generation on my side and on my husband’s has not gone untouched by the disease. I wonder what the family picture looks like ten years from now. Will my children still have all their aunts, uncles, and cousins? I doubt it, and my heart breaks just thinking about it.

We scrappers joke around that if you piss us off we will crop you out of our layouts. Ha, in this family, we divorce you out of our layouts.

I hate divorce. I hate how it breaks apart families, unit by unit, until there is nothing left but scraps in a photo album.

Tomorrow I will have a lovely dinner with my family of seven, and one set of grandparents. Our kids have three sets total, and that is not going to change for them. They will never have to learn to love a new grandparent or to forget a discarded one. Only the natural circle of life will separate them from their grands. For that, I am thankful.

I admit though, I am jealous of you who have generations of intact families. You are out there right? You do exist?

Kitchen Musings

1. We spend about $1000 a month on groceries (and cleaning supplies that I hardly have time to use and don’t know why I am always replacing.) Every week one of us makes a run to the wholesale club and to Walmart. And then there are still multiple trips to the market down the road for the daily essentials like fresh vegetables and whatever thingie I forgot that I must have for tonight’s dinner.



Oh wait, that’s the problem. Every night I stare blankly at the monthly menu planner clinging to refrigerator door. Tonight’s imaginary dinner sounds delicious, as does last night’s and tomorrow’s. I wander back and forth between the refrigerator/freezer and the pantry, opening one and then the other, making mental notes of the possibilities and... I am stymied. How come there is never anything to make for dinner in there?

2. Many many moons ago an old witch gave me a heavy, short, fat, square, green glass bottle filled with some sort of potion that was supposed to magically make my step-daughter TK’s mother’s boyfriend get hit by a bus become a nice guy. I dumped out the liquid spell on the back lawn (sorry TK) and then used that beautiful bottle to house my dishwashing soap all these years. About a month ago Kimani climbed up on the counter and smashed it on my granite countertop. Then for good measure she tossed what was left of it onto the floor where it shattered some more. That green bottle broke into a million sparkling pieces that took me forever to clean up. Not one of them landed on Kimani.

And now I can’t do dishes anymore. Ok, well, I can’t peacefully do dishes... because I have nothing to store my soap in. I keep having to drag out an oversized bottle of Dawn (Remember the trips to the wholesale club?) from underneath my sink. I squirt some into whatever small dish is handy and I use that to wash the daily pileup. Every time I have to dip my sponge into the dish, I wonder what other people do with their dishsoap. I think about those plastic pump bottles that always have dried up soap on them, like a used taper candle. I don’t want one of those.

3. Last Christmas my bestie got me a pressure cooker set. It saved my life. Ok, that is a slight exaggeration but it saved my sanity which is tightly tied to my life so yeah. I have since learned that almost everyone I know is afraid of pressure cookers. Have no fear, this is not your mother’s pressure cooker, it’s your great-grandmother’s. (During and after WWII pressure cooker manufactures, of which there were quite a number, started using cheap and available light-weight aluminum; and the blow ups followed. Those days are over. Pressure cookers are well-made once again.)



It takes a bit of practice to get the hang of it, but pressure cooking is definitely the way to go for about half of what I cook. (Which according to #1 isn’t much these days.) At first it was all about the time-saving. Every evening, hundreds of (ok five) hungry children start whining and I realize it is already 5:08 p.m. and I have not even started staring blankly at the menu planner yet. What to do, what to do? It is so hard to think with Autumn tearfully clinging to my leg begging for food. On autopilot I get out the pressure cooker and my favorite cookbook and a half hour later they all love me again. Now it is my go-to pan because food made in a pressure cooker tastes better. It’s true. You should get one.

4. Pan drippings, what the heck do you do with them? At least once a week I end up with a pan (usually my pressure cooker) that has an inch or so of left over meat juice. It is too slimy to dump down the drain and too watery to dump in the garbage. I could sop it up with handfuls of paper towels and dump it in the trash, or leave it overnight and hope it congeals enough to scrape it into the trash, or scrounge up an empty carton or can to pour it in before placing it carefully in the garbage bin... or I could toss it on the back lawn (in the same place as the magic potion) but then the coyotes might smell it and come eat our cat. (That happened once. It is a horrible story, a funny and horrible story which I will eventually be forced to tell you because some cat lover out there now thinks I am evil for using the word funny to describe a story in which the family cat gets offed by a coyote. When you laugh during the funny part you will forgive me.)

Whenever I am faced with the grease dilemma, I remember that I really want to buy a grease separator. I have this fantasy that if I can get the actual fat out of the pan, the rest can be safely poured down the drain with a swish of scalding hot water. The grease will thicken up nicely and can live out the rest of its life in a paper towel in the local landfill. Is this possible? Do any of you have a grease separator? If not, what do you do with your pan leftovers?

School Bus Blues

When Masha started General Education Kindergarten last year, she was transported to and from school on the regular ole bus with her big brothers. It wasn’t long before the problems started. She wouldn’t keep her seat belt on and it got worse from there.



(Do any of the other kids on the regular bus wear their seat belts? Uh, no.)

But she started moving around too much, leaning over the seats, bothering other students... and spitting. Apparently someone on the bus modeled that for her and she picked it up lickety-split. I fielded phone call after phone call about how bad she was, and I tried idea after idea trying to get her to behave. I even begged, bribed, and forced her brothers to take turns sitting with her to try to keep her behaving in a positive way. That only made things worse, and in retrospect it probably wasn’t my best idea ever.

The bus ride is so boring for her. Other kids sit together and chat, or they whip out their handheld electronic games and play. Kids socialize on the bus, at least that is how I remember the long daily rides when I was a kid. Masha sits alone and she has no games to play. The special books I sent for her to only have on the bus turned into projectiles. Eventually she started kicking the windows, causing the driver to have to pull over to deal with her. The school refused to provide an aide, so I suggested a 5-point harness seat belt.

Instead they kept pushing for her to ride on the special bus, and I had no ideas left, no fight left... so I agreed to try it. I figured they would work with her, teach her the proper way to ride the bus and that before too long she would be back on the regular bus.

Oooh, lesson learned. If it goes on the IEP, it is LAW and it is a nightmare to get back off the IEP. The little bus came with an aide and a harness that I had to strap on her everyday over her clothes/coat. Once on the bus, they literally clipped her to the seat by the shoulders and lower back using the metal loops on the harness. The aide also coddled her. She waited outside the bus and took Masha’s backpack for her and then helped her up the steps and into her seat, allowing her zero independence. Since this bus is used for multiple children with special needs across multiple schools in our district, Masha’s bus ride became much longer, and she was forced to leave class 15 minutes early everyday to get loaded onto the bus so that it could depart prior to the regular bus loading frenzy. A couple weeks lasted months.

One day, while waiting with Autumn and Masha for both their buses, a very bad thing happened. I forgot the harness. When Masha’s bus came (before Autumn’s this time) they refused to take her on the bus without it. I was stunned. The kid can’t ride on the stinkin’ bus one freakin’ day without being strapped in like a convict? I asked them to wait for me to drive up our (sorta long) driveway to get it, and they said they did not have time for that. At that moment, I forgot that I am a nice lady and became Psycho Bitch. Seriously, the rope snapped, kwim? Masha was standing on the bottom step of the bus while the aide was trying to talk me into taking her back home, and I said “No. No fucking way!” (Yeah, I took a lot of heat for that one. Sorry parents of those kids on the bus that may or may not have heard me.) I turned around and stuffed Autumn (who I was holding the whole time) back in the van, jumped in and drove up my driveway with Masha still standing on the bus step.

Yup, they waited for me to return with that harness. But I decided right then that Masha was done riding that bus. I insisted that they begin teaching her what is expected of her. I demanded that she be back on the regular bus within a week or so of practicing without that contraption on her.

And it all worked out just fine. Then over the summer, she attended camp for 6 weeks. She rode the full-sized camp bus every day with no problems, and I was one proud mama.



This Fall, she started off on the regular bus again and everything was going just fine; until I got the phone call today. Masha is taking her coat off and opening her backpack and throwing her stuff on the bus floor. And although she is staying in her seat belt, she is getting up on her knees and looking over the seats. She is causing her driver so much stress that he “missed a turn down a street one day last week.” I felt like pointing out that this dude backs over the mailboxes at the end of our road once a week, what’s his excuse for that? But instead it went kinda like this:

Me: I fail to see the problem with Masha removing her coat. In fact, if Masha can now unbutton her coat, that is an OT goal completed and I am impressed.
Principal: It’s cold out now.
Me: Yeah, Masha will figure that out.
Principal: blah blah blah blah
Me: No, no special bus. How about an aide?
Principal: blah blah blah blah, probably not.

I am tired people. I am sad. I am feeling defeated. (But mama, SHE KEEPS HER SEATBELT ON!!!!!) Yeah, there’s that. That’s big. So I suggested we try more detailed social stories, and I have a few more ideas up my sleeve but really the problem is not going to be solved anytime soon.

Because the real problem is that she is bored and lonely on the bus. No kid sits still and alone, day after day, with nothing to do but stare out the window for forty minutes. Am I right?

Unschooling Kimani

So remember back over the summer when I freaked out about the unexpected additions to Kimani’s school Behavior Plan and said I was thinking of homeschooling her? Well, I did it. I mean I am doing it. Sort of.

First off I have to say that I am super proud of myself for attempting this. I could have been a SAHM with no kids at home during the day which theoretically means I could be working out at the gym five days a week, planning and executing gourmet meals, finishing the book I have been writing for three years, or maybe just sleeping all day long. But instead, I traded in my freedom to give my precious Tasmanian devil a safe and happy Kindergarten year at the Mommy Academy of Table Dancers.



I suck at this. I knew I would. I told you I would. I bought a bunch of stuff to work from: the big Preschool lesson plan book, a bunch of manipulatives, and edible arts and crafts supplies. I managed (on the third try) to write an acceptable homeschool plan for our district and met with them to rework the IEP so that therapies could still happen. (That is not really working out, but it is a whole separate post.)

In September Kimani played along. We went bowling and grocery shopping with PECs cards. We went apple picking and visited a farm. We studied the color red and the math concept of One and Two. We dressed the weather froggy and painted pictures. We played on the iPad and read Moo Baa La La La. Sounds great right? Well it wasn’t great. It was tortuous because one of us is extremely, ahem, self-directed (okay, maybe we both are). By October she was not willing to play along at all for the things she doesn't care about.

She and I both learned a lot in that first month. She knows that two, when it comes to yummy things, is more desirable than one, and given the choice she will say, Two. She can now say apple. She can jump on her trampoline for long periods of time without holding on to the sides. She knows the difference between pink and red. She now knows that the grocery store gives away cookies to little girls and will say cookie as soon as we enter the store. Because her receptive learning ability is higher than her ability to express herself, these little milestones mean that she is really picking up quite a bit. I learned that she does not want to do anything schoolish. Put a puzzle together? NO! Draw a line (or heck, hold any writing utensil and make any marks at all) NO! Sit for any book other than Moo Baa La La La? NO! You get the idea.

I also learned that she loves to do things that are real, like cooking, shopping, or outings. She prefers playing with whipped cream over playdough. She prefers loud dance music or sitting on the piano and tapping the keys with her feet to playing with toy instruments. I learned that Kimani really understands the PECs system and wants to use it to communicate. I learned that she prefers unschooling to homeschooling. And so now, I am trying to incorporate pre-K level science, math, literacy, etc. into everyday activities that she is willing to participate in. Tomorrow a special education teacher is coming to visit. We might be adding an hour a week of consulting time to the IEP, depending on how impressive she is.



I also learned that while it does make me crazy to never have any alone time anymore, the trade off of getting her all to myself for hours on end is really cool. It has been a long, long times since she was my only child at home. Everyday I see advances albeit teensy tiny ones. Some days I am really encouraged that she is more educable than I had realized. Other days... well on other days, I try not to think about what this looks like in three or four years. One good or bad day at a time, right?

Thoughts on Adoption

As many of you know, Masha and Autumn are adopted. We got them in the late summer of 2010 from Kyiv, Ukraine. Autumn was 10 months old and Masha was 3 years and 5 months old... to the day when the judge decreed them our daughters.

We knew very little about them when we chose them. We knew that Masha was healthy and that her paternal grandparents were still visiting her regularly. We knew that Autumn had an unfixed complete AV Canal heart defect that was possibly killing her and likely causing permanent damage to her lungs if she did live until we could get her home and into surgery. We knew they were cute.





We also knew that it would take about $32,000.00 to complete the entire adoption process. Half came from our family members and the other half was donated from people in our real and virtual lives, and even from strangers. We are forever grateful to those people.

We also had no idea how many adoptions end in regret and even disruption. Yes we took the class that warned us that some orphans may not bond well and that there were other negative possibilities but we didn’t dwell on those things. There are many reasons why adoptions can sour, and one of the least talked about is that adoption is not the same for the children as it is for the adopting family. While that might seem obvious, the consequences of it can be devastating.

It dawned on me the day I met Masha... though the future we were saving her from was bleak, her present was just fine with her. She was a very happy, well adjusted child who had absolutely no idea that the nice people who were visiting her were about to take away from her everything she had ever known and loved. She had a life. She had a language. She had people she adored. She had children around her who were like siblings. She had a routine, and well-developed senses for taste and smell and sounds. She had preferences. She had a life, and we took it away from her.

From her perspective, we were not rescuing but rather abducting her. She must have been terrified. She must have missed her grandparents, doting groupas, and orphan siblings. She must have missed her home, her routine, her crib, her swing. She must have been frustrated and lonely for the things she understood.

Looking back, I think we did ok. We got it pretty early on and we did everything possible to keep what we could of her world. I cooked some Ukrainian dishes that Masha would recognize (though God only knows if they tasted close enough.) We kept the few ratty stuffed animals, and all the clothes and shoes the groupas gave us for her. We bought Russian lullabies for her. We showed her pictures and told her how much everyone still loves her. We called her by her Russian lovey name, and used all the Russian words we learned and could remember. Most of all, we tried to respect her will.

As it turns out, Masha is probably one of the most resilient orphans there ever was. She learned some signs before she even left Ukraine, and once home she drank up the English language. She literally spent hours on the iPad touching pictures and hearing the words. She immediately adjusted to the new routine and overcame her fears (of the bath, of losing food, etc.) within months. She watched everything, and she participated in everything. But what really made all the difference was that she fell in love with all of us.

Autumn, too, had been loved. In fact, if not for the love of her house doctor, Tatiana, I don’t know if she would have lived. Tatiana saw to it that Autumn finally got the heart surgery that she so desperately needed, even though she already knew that Autumn had a family coming for her. She also oversaw round the clock feedings because, as it turned out, Autumn was suffering from severe reflex and needed to be fed every two hours. More than half of what she ate came back out. I cannot imagine how hard it was pre-surgery to get a baby who was in failure to thrive and congestive heart failure to eat, but they did it. Autumn was not an easy baby, but she was an adored baby.

For precious Autumn the uprooting must have been even harder... because we even took her name from her. There was nothing I could cook for her that resembled anything they fed her, and our clumsy attempts at Russian utterances were met with stares. We had none of her lovey dolls or toys. And, sadly we assumed that since she was just a baby that her attachments would be easily replaced. Not so. She began sucking her thumb so intently that she eventually sucked the nail right off. She woke up crying every night, on and off all night. All of our affection and attention probably kept her alive, but it wasn’t until she grew into us and forgot her past that she was able to bloom.

We feel very fortunate. Our daughters are healthy and happy, and they have given to this family just as much as they have received. Our daughter Kimani has been blessed immensely by having two sisters who do everything with her. Those two little orphans were just right for us, and for each other.





Over the past three years, we have heard many unsettling things about adopted children, the adoption process, adoption organizations, and so on. We know that our story is one of the happy ones. We still believe that Reece’s Rainbow is a good organization, and we are still thankful for the roles it played in bringing us to our girls. We still think our facilitator Oleg is one of the best. We still think our girls came from a place that while poor, provided them with loving care. We still think that the seven weeks we spent in the capital city of Ukraine were some of the best times of our lives. We still think that our adopted daughters are two of the most wonderful people in the world. In fact, three years into this journey, there is not one bad thing I can think of to tell you about our adoption.

Triple Bunk Delight (Dilemma?)

Masha and Autumn share a small bedroom, and for the longest time we have been trying to figure out how to get all three girls in there and still end up with space for their things. A couple months ago I was googling for bunk beds and came across a site where the guy makes triple bunks, any custom size or specification you want. We emailed back and forth and not only did he agree to make what we need, but for less than we paid for one of our son’s captain beds. I sent out a check for the deposit and the shipping and we waited eagerly.

Yesterday they came, all 300+ pounds of them on a pallet wrapped tightly in a blue tarp and lots of plastic wrap. Last night my husband and his buddy went to work and in about an hour, they were done.

The plan was to start with Masha in the top bunk while Autumn stayed in her crib for a couple weeks to see how it works. Then we would move Autumn to the bunks and have Kimani move into the crib in their room so that she could see how it is supposed to work. We knew it might be months before they willingly go in, and stay in. Our biggest worry was that one of them would wake up during the night (or wee morning hours) and decide to get up and get into trouble.

Masha was already asleep when the bunks were completed, so I carried her into her room and stuffed her up on the top bunk. I piled quilts around the bed on the floor just in case she wriggled to the foot of the bed and fell out through the opening.



Sure enough when we went in there to check on her this morning, she was awake and full of smiles up there. And Autumn was watching her and squealing with joy. In fact Autumn was so excited about the beds, that I decided to throw her mattress in the middle bunk and see what happened. As if the mattress was filled with magnets, the two little girls went for it.





Masha decided that her bed was more fun, so she climbed back up into hers. Which prompted Autumn to want to do it. A firm, “No, no Autumn that is Masha’s bed,” from me and “MY BED!” from Masha did not deter her and she made her way up there as soon as mama left the room.





The good news is that they love the beds.

The bad news is that not one of them is willing to go in the bottom bunk. I got flat out refusals from all three of them, with some animated “Up, up, uuuuup,” whining from Autumn. What to do? I can force someone into the bottom bunk but I already know that child will end up with another in the middle bunk, and for sure a fight will ensue.

More bad news... a temptation I had not considered. (Masha, don’t mess with the light; “I can’t help it. It’s so beautiful!” Zap.)



And even more bad news... it won’t be long before Kimani makes her way to the top bunk.



So while in theory the triple bunk beds are one of my better ideas, we will have to wait and see how it all plays out.

If you are interested in a beautiful bunk bed set for a very fair price, go visit Jason.

Too Much Equals Never Enough

Today is library day for my second-grader Jade. He brought home a Magic Treehouse book last Wednesday and was excited for me to read it to him. I tried. I really did. But somehow over the week, we never finished it and this morning I gave it back to him so that he can renew it or trade it for another. I felt like crap about it.

Then a little while later I had a revelation. I do too much for my kids. I am so busy doing too much for them that I don’t have time to do enough with them—and we all feel that failure. While I am busy folding clothes, cleaning up toys, putting away the clothes, packing snacks and homework, cooking, setting the table, clearing the table, doing the dishes, brushing teeth, bathing my beauties, searching for lost shoes, making grocery lists, etcetera... they are waiting for me and wishing for me to spend time with them. For the longest time I have felt that they are ungrateful brats for not seeing how much love goes into all of that care I provide them with. But today it occurred to me that they could be doing most of those things with me or even by themselves, thus freeing up my time so that I can give them the quality moments they yearn for.

This is not my first time around this block. I overdid it with my step-daughter TK as well... but I never noticed it because back then she was my only child and I had all the time in the world to do it all. She got bedtime stories every night, one-on-one playtime everyday and never had to lift a finger to help out until she was a teenager. I guess I always saw her as a little girl who was too young to do “my” work.

This could be because when I was a little girl, I was not allowed to help my mom around the house. That was a rule put in place to punish her and make her life as miserable as possible. At the same time, I was given jobs that your average 8 year old doesn’t have to do... like stacking cords of wood and carrying it in everyday, or helping to slaughter chickens and butcher deer, or staying hidden away in a bedroom so as not to draw the wrath of my step-beast. I never learned how to contribute to ordinary daily life and thus it never dawned on me that TK or any of my other children were and are capable of doing housework.

My kids are not going to care that they had clean clothes, packed backpacks, and dinner every night because those things are simply taken for granted. What they will remember is that mom never made time to read, Dingoes at Dinnertime. So I better get my act together and start making them do what they are capable of around the house.

I know there will be squawking and push back, and crying and whining. What I don’t know is if I have the strength to withstand all that and train them to take helping out for granted. Ha, maybe I should make a reward chart for myself where I get a sticker every time I follow through on making one of them do something helpful. When my chart is full, I can get a fancy latte and drink it up while I read a bedtime story to myself.



No, no, really... I promise to spend my time saved on them.

(Picture credit: Michele Quigley)

Resistance

Resistance; that’s it, that is Kimani’s word. It is with her when she wakes up and it follows her all throughout her day.



All. Day. Long. She resists. She even resists the things she wants and likes. This is not an exaggeration. I could write pages of examples starting with her wanting to get up in the morning and then immediately turning around and trying to get back in her crib rather than head to the potty, to her screaming “no bed” all the way back there at bedtime. From asking for a certain food to spitting it out all over herself and the floor two minutes after she gets it, to insisting that she wants to go out on the swing and then fighting the whole time to sit on the lawn and eat dirt.

All... day... long.

It is as if the urge to do it is immediately followed by the urge to undo it. There seems to be nothing that holds her interest long enough to entice her to participate in any meaningful way in anything.

Here she is eating berries. She loves berries. She has a mouthful of berries, is crying for more berries, and is upset because some are trying to get away while she cries. She can’t just enjoy the berries. I don’t know why.



She is frustrated. I am frustrated.

The girl has about a 30 word vocabulary, and a third of it is made up of ways to say no. It is hit and miss with bribery... M&Ms no longer work, nor do cookies. The promise of a bath, or music, or even “no bed” only seem to fuel a desire to get that reinforcer without doing whatever it is I am asking her to do first. The threat of time out or even a spanking is not enough to override whatever destructive thought she has on her mind. The only thing that stops her is a loud, startling “NO!” which is probably why she enjoys handing that one right back at me.

I wish academic learning was optional, crayons were designed to be eaten, and play-doh was as good for you as peanut butter. I wish diapers were magic mini toilets, ceramic and glass didn’t break, and ingested dirt didn’t cause diarrhea. I wish there was a drug that turned thoughts into words, frustration into focus, and resistance into motivation. I wish I could figure her out... because it feels like I am constantly failing her.

I just want her to be happy. I don’t care if she ever counts to five or spells her name. I just want her to be peaceful and safe. And right now, even with my great imagination and all the hope I can muster, I can’t see that future for her in my crystal ball.

I hate the cards she was dealt. I hate them. I fucking hate them.

Beyond Down Syndrome

It is there in her face for you to see before you even learn her name, or her favorite food. Before you find out that she loves jewelry and shoes and tights and dresses and little hollow plastic balls that double as fake boobs, you already know that she has Down syndrome. The shape of her beautiful blue eyes rats her out.



Every thought you have now about her is modified by that fact. Your brain does its fabulous work of classifying her based on what you know about it. What she does that fits your schema for Down syndrome will be tucked away under, “They are all so...” and the parts of her that crack the mold will become inspirational fodder stored under, “Aww, despite having Down syndrome, she ...”

Can you imagine having something about you that was so obvious, and so pervasive, that you were unable to develop an identity apart from it?

How can she develop her individual identity when no one can see her as a person, period? No one. Not even me sometimes. She is a person with Down syndrome. You see a person with Down syndrome. Every single thing she does is relative to Down syndrome.

I don’t want to raise awareness about Down syndrome.

I want to raise awareness about being human, about having a personal identity.

I want you to forget about Down syndrome.

I want you to look at her. I want you to see her.



Let her develop her identity separately from her chromosome count. Accept her as fully human.

Awareness ---> Acceptance

It is October, Down syndrome awareness month. With that should come some obligatory posts about how awesome ordinary my girls are. The idea is that if you could become truly aware of what it means to be a person with Down syndrome, you would not treat people who have it any differently than people who don’t.



I’ve never been quite sure how to make that happen, and last night—during the middle of the night while I was supposed to be in deep repose—it dawned on me: I can’t make that happen. That is because we both have a role in this process. It is my job to bring awareness to you and your job to accept people with Down syndrome as fully human, like you are. And I cannot force that.

Yesterday a woman from the Office of People with Disabilities called to share some program information with me. We talked for a bit and it came up that I actually have three daughters with Down syndrome and she said, "You are such a good person." What can I tell her about Down syndrome that would make her understand that I am no more good than any other woman who has five children at home?

A while ago I was at a Pampered Chef party and as I chatted with a stranger, I mentioned my three daughters with Down syndrome. A very serious look came upon her and she said, "Oh, I’m sorry." How do I explain Down syndrome in a way that lets her know there is nothing to be sorry about?

In early September I sat in a meeting with Masha’s Kindergarten team. Her new teacher was visibly nervous. The team asked a lot of questions about behaviors. What could I say to ease their minds?

Sometimes I feel like a walking Down syndrome commercial. Over and over I find myself saying, "They are just like my other kids except they learn more slowly." (Except for Kimani of course, who really is not like anyone else I have ever met, and in her case I am continuously explaining that "this is not what Down syndrome is like. She suffered brain insults as an infant and has neurological damage." But Down syndrome is what they can see on her, so despite my denials, it gets the blame.)

If you could see Masha and Jade together, you would believe me. While they are miles apart in their academic progress, they are evenly matched in their life skills. In fact, though she is six months younger than he, she is more helpful, gets ready for school more independently, and follows routines better. When it comes to fighting over an iPad, they are even-steven, and it is a toss up as to which one will come crying to me. She rides his bike, pulls him on the wagon, chases him down the slides. He reads stories to her, and gets insanely jealous when she gets one of his sight words right during our games of Word War (an M & M prize is at stake here folks.)



Yes, if you could spend an afternoon with my children, you would know what acceptance looks like. When my boys look at their sisters, they don’t see Down syndrome at all... they see only Masha, or Autumn, or Kimani. They see people not a syndrome, and when that happens for you, I will know that I have done my job well enough that you have been able to do yours.

Tell me, could you ever imagine yourself screaming with joy into the face of a person with Down syndrome?

Daddy Heard Your Song Today

I watched daddy’s black car swing into the driveway, music blaring. It was your song playing on the radio. He waited it out, and though I couldn’t see through the tinted glass, I knew he was crying. He was crying over you Kimani.

How does one broken heart console another? Of all the things I have learned in the last five years, that one remains elusive. Instead I catch his sorrow and we cry together, standing outside in the rain, with the autumn wind flinging wet leaves against us.

If only we knew then in the hospital what we know now. If only we had pushed harder. If only we had insisted. If only we had not believed the nurse who said you were fine, when really you were seizing from the bacterial meningitis that was terrorizing your brain. If the antibiotics that came late that night had been administered 11 hours earlier, would you be a different little girl?

And what if I had stomped my foot down and never given in to letting you get that CV line in your groin? Would the hospital have really called Child Protective Services on me like they threatened to? Would one less brain insult have made a difference for you? Will I ever stop hating that doctor who pressured me into giving her permission to do it to you?

It was all life or death, honey. Every decision we made concerning you led to this life or no life for you.

If you could have seen your future, would you have consented to have your aorta resectioned? Did you visit with God while you were dead? Did he convince you that this life would be ok once they restarted the blood flow to your brain... bringing you back to life? Did he give you a choice in the matter?

I hope so Kimani. I would like to believe that you chose to stay with us, despite the life you would have here. Because that... that kind of feels like forgiveness, which is maybe what your parents need the most from you.

Kryptonite

Today is my 14th white wedding anniversary, and for some godforsaken reason my husband saw fit to infuriate me over the weekend thus putting a damper on our festivities.

Disclaimer: my husband rarely makes me angry. Oh I get annoyed and all that, but totally “WTF?” mad... hardly ever.

When he does make me really, really angry, I hate it because there is not a thing I can do about it. Ok, well yeah, I can give him the cold shoulder for a while... but that only lasts a day or so. I just cannot live without talking to him, and when I talk to him, I like him again.

Yesterday I spent some time thinking about how we fight. It is hard to have good battles with kids around, and since he came with one as a package deal, we have always fought incognito. A fight will brew under the radar for a while, and then bang a few minutes of yelling, and then ice for a day or so. As we get older, our fights are even less dramatic... Hell, I can’t even pretend to kick him out or threaten him with a break up. Me alone with five kids while he is out nursing his pain in a bar full of snacks and football? Um, no.

But because of that, nothing ever really gets resolved. When we fight, the underlying cause is never anything new. In fact, you can probably trace it back all of our nearly 17 years together. While on one hand I think that sucks, on the other it is clear we really have nothing major to fight about. Just the usual he is him and I am me and we-don’t-do-things-the-same-way kind of piddly stuff. Or maybe we are simply super tolerant people.

Either way, I can never stay mad at him for long. When I do get angry, I have all sorts of visions of this being THE time I ice him for weeks and he suffers terribly and grovels at my feet, and never ever makes me mad again. 24 hours later I am dying to tell him about something that happened, or I am desperately needing to talk something over with him. I want to keep up the madness but when it comes down to it, I have no staying power for anger. And truly, if he starts to grovel I have to stop him because it just isn’t sexy. A simple “I am sorry for being an (insert colorful expletive here)” accompanied by my favorite latte from that little coffee shop downtown is good enough for me.

Because I have come to realize that he is my kryptonite, and that’s why I married him.


(January 10, 1999, taken a couple minutes after we each said, “I do” for the first time.)

What I Did Over Summer Vacation

Now that school has started back up, I will take a few minutes to reminisce about the first family vacation I have been on in more than five years.

It came about on a fluke. Sometime in July Kimani got sick right before a family birthday party. She stayed home with daddy while my mom and I drove with the four other kids to the birthday party a few hours from my house. On the way back my mom remarked that everyone was so good in the van that the trip was "easy". Right then a crazy idea occurred to me. Mom and I could drive these kids all the way to Tennessee to visit my dad and stepmom (who can no longer travel to us).

My husband agreed, plans were made, and a vacation was born.

On the way, we stayed overnight at a hotel with an indoor pool because I learned long ago that the hotel pool is the best way to break up a long drive.


We arrived at the house my dad built for my grandmother (which is right next to his own on the TN river) on what would have been her 100th birthday. I have not been there since before my grandmother died, so it was sad for me and I missed her terribly. It took my kids a few hours to stop running around like maniacs in the house which is about four times the space they are used to. My dad had gone out of his way to get baby gates to block certain doorways and the stairs. Ha, Autumn got through them in about five minutes. She was so proud of herself standing at the top landing.

My little daredevil.


We enjoyed a couple lazy days of visiting, playing, and fishing. My oldest son caught his first fish. He was so proud of it that my dad froze it and insisted we take it home to show daddy.

Playing doctor. Poor baby doll needed a shot.


Waiting for a nibble.


Showing off his first fish.


Mom and I loaded the kids up and drove them to Gatlinburg to visit the Ripley’s Aquarium (so worth it if you can ever get there).

Undersea awesomeness.


Taking a cuddle break.


My clowns checking out the clown fish inside the tank.


Jade wishing for a snack.


Walking through the aquarium tunnel admiring the sharks.


Masha and Autumn were awestruck.


The King crabs were a favorite of the kids but I love the jellyfish.




All of us posing in front of the tunnel mural.


We had only one afternoon of bad weather. And wow, did that monster storm ever come on fast. We barely made it back from the dock to the house without getting poured on. The boys loved watching the lightening, wind, and rain over the river from the safety of the couch.

Trees ravaged by the winds.


The next day we took them to the Knoxville zoo. School had already started for the kids in TN, so the zoo was fairly empty and the weather was perfect making for a delightful day.

Getting silly by the elephants.


Trying to get the gorilla to get up and play.


Enthralled with the meerkats.


They offer camel rides and for a few brief moments Autumn indicated that she wanted to do it. As the boys were climbing on, she came to her three year old senses and ran the other way.


The Knoxville zoo has a play area with a water stream that the kids can splash in. Masha showed great balance as she hopped over the stones. Autumn, not so much.






And Jade... that boy can’t go anywhere without attracting a little girl to him. He is a natural gentleman.


Family shot near the black bears. Oh my, a white tiger crashed our pose!


That evening everyone was exhausted, and though Autumn’s darling personality held up...


Her strength did not...


Every visit to TN ends with family photos in front of the fireplace. The kids were excited to pose with grandma but by the time it got to my turn they were getting antsy and bored.




Then we went over to grandpa’s for pictures and good-byes.


That little extra push to get back to that hotel with the indoor pool... so worth it!




Monkey see, monkey do!


So there you have it. Nine action packed days of travel and fun. We all missed daddy and Kimani and by the end the girls were asking me everyday, "Home? Daddy? Kimani?"

Yeah, they missed their daddy for a week, but I miss mine all the time... I love hanging out with my dad and I look forward to getting back to Tennessee soon.

(You might be wondering why we would not just all go. Kimani does travel in the car fairly well, and for the most part she enjoys riding in the stroller through entertaining places, but as you can see from the pictures the house is not and cannot easily be Kimani-proofed. And, the deciding factor was that both houses literally sit on the points of side-by-side capes jutting into the river; water on three sides with no fencing.)

View from outside grandpa’s front door, as beautiful as it is dangerous.