Saturday, October 26, 2013

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.

Wednesday, October 23, 2013

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.

Rumors next to Coffee

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

(Picture credit: Michele Quigley)

Wednesday, October 16, 2013


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.

Wednesday, October 9, 2013

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.

Tuesday, October 8, 2013

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?

Monday, October 7, 2013

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.

daddyHow 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.

Tuesday, October 1, 2013


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.)