Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, October 29, 2006

Life is crazy in my house

Life is crazy in my house. And pun intended! There are days when I wonder how I'm going to maintain my sanity and make it to the next one. People are constantly asking me how I do it? Well...I don't...HE does! HE keeps me going. HE helps me get the overwhelming number of errands, doctor appointments and other tasks done. Apparently, though, HE doesn't feel the housework is that important because I never seem to be able to get it done......sigh......

It's two more days until Halloween, and Angela is so excited. Quite awhile ago she decided she wanted to be an astronaut. It took me a bit to pull together a costume, but I did. When I asked her what I should be, she looked at me like I was clearly not thinking this all the way through, because what else could I be, except for an "Astronaut helper"? D..U...H!

But the best was a couple days ago. The new church we found was having a harvest festival and the kids needed to dress like cowboys/girls. As is typical for me, I remembered this event somewhere around 5:00 pm, and it started at 6:45. Cowboy clothes were NOT something I had floating around here. But I had a flash of intelligence, and remembered the neighbor boy who is king of dress-up! I called and talked to his mom, who just so happened to be cleaning up their basement playroom and had just gathered all the cowboy stuff into one spot. About 5 minutes later her kids were at my door with the anticipated western gear. Angela was thrilled to death, and couldn't wait to get the stuff on. I must admit, she makes one very beautiful cowgirl!

As Long As It's Healthy

originally written in January 2006

How many parents, when they discover they're expecting a baby, say, "We don't care if it's a boy or a girl, as long as it's healthy"? This amazes me!

If you don't yet have kids of your own, I want to warn need to go back to school! If you already have kids of your own, start taking night classes. You should be focusing your new training on a masters in psychiatric medicine. That is because as a mom, nobody tells you that you need to be prepared to deal with these kinds of issues...just in case.

My 17 year old son has, among a long list of other things, parnoid schizophrenia. At least that's what we think it is. When you go in your child's room and you find that he's writing letters to the demon voices in his will instantly make the hair on the back of your neck stand at attention.

I bet nobody has told you there may come a day when that beautiful baby, the one who had the huge smiles for you in his crib each morning, would one day threaten to end your life in a most gory way.

I bet nobody has told you that little boy who was so proud of himself when he learned to take those first steps would one day use those same feet to run away over and over again, leaving you at home to worry in the dark. Is he cold? Is he hungry? Is he alive? Did he finally find the bridge he's been talking about? I bet nobody has told you that some kids attempt suicide at a very early age, and that when they go to bed at night you don't know if they're going to get up again in the morning.

I certainly never thought my morning ritual would include the emotions it does now.

Each morning, when it's time to wake my son up for school, I stand outside his bedroom door willing myself to open it. I open it slowly, holding the knob firmly to have something to hold onto should I find the worst.

Because of the angle of his bed and the way he sleeps, his foot is the first thing I see every morning, and every morning the first thing I check for is the color of that foot. Is it blue? Grey? Does it flinch if he hears me?

I step around the tall dresser that is right by the door, too see if his face is showing as he usually sleeps with it covered. If I can see his face, I wait before I say anything. I want to see him......its the only time he is at peace...when he is sleeping. Sometimes if I look closely I can see the baby he was 17 years ago.

But most of the time I can't see his face so I'm forced to say his name. Softly....I say it softly...I want him to remember my voice is not always harsh and frustrated. Sometimes it is soft and loving...."Tyler....Tyler...." I hate that he doesn't hear me right away. It adds yet another moment of fear. "Tyler, are you awake?"

The moan of a sleeping teenager brought back to conciousness is music to my ears. But I'm not out of the woods yet. I have learned.... from experience... that the "moan" can mean he's so drugged from an overdose of something that he's unable to speak, and that I have just minutes to call an ambulance.

I have to get him to talk.

"Do you have anything going on after school today?"

His answer, though mumbled, lets me know all is right for the moment, and I can go on with the rest of my day.

Unfortunately, I have been known to let my guard down too soon, like today. No, he didn't try to hurt himself. Instead he threatened to hurt me. To put an end to MY suffering. With eyes clearly possessed by something evil and very foreign, this disease called schizophrenia, he stared me down and dared me to challenge him. Instead I locked myself in the bathroom and called the police and an ambulance to take him away.....again.....

What I would give to have that smiling toddler standing in the crib waiting for me. What I would give for that.......


Thursday, July 27, 2006


You know, some people just don't think before they speak. I have been guilty of doing this myself on occassion. But when people don't think before they TYPE? Oh come on! That's why you can save all kinds of things as "drafts" before hitting the "publish" button.

Another blogger recently wrote about "Bumper Sticker Thinking", and happened to make a really dumb comment. He saw a "My kid has Down Sydndrome" bumper sticker and thought that parent must surely hate the "My kid is an Honor Roll Student" stickers.

Ummmmm why would that bother a parent of a child with Down Syndrome? This guy hasn't thought it through.

When parent puts a bumper sticker about their child on the car, it's not so much for everyone else, but for their child! It shows my kid, "Hey! I'm so proud of you that I'm willing to share it with the whole world!"

Should I be any less proud of my child who has Down Syndrome? NO WAY! Not only does it show my daughter how proud I am of her, but it creates awareness for others who may one day find themselves sitting face to face with a doctor who is telling them results of their prenatal testing.

Did you know it is now estimated that 95% of babies with Down Syndrome are aborted? How is this different than genocide? The Down Syndrome community is so incredibly awesome. I cannot even begin to describe it. It's not just that your child has a disability and there is a common bond, but there is something truly special about people who have DS. It's not something I can even begin to describe. It is something you have to experience for yourself. But that community is slowly dwindling.

I have new aquaintance who is a first grade teacher in a HUGE metropolitan school district. Considering most kids with DS are now mainstreamed, she finds it quite odd that in the last 6 years she's not had one child with DS in her class. NOT ONE! Why??? Because they're being eliminated before they take their first breath. Mostly because medical professionals who only know the MEDICAL side of things encourage parents to terminate. But OB/GYN's, unless they have a personal connection to Down Syndrome, don't know anything past that child's first couple weeks of life. If they did know more, they'd realize it's not such a big deal! I'll tell you what, if my child had just DS to deal with in life.....HA! would be GRAND!

So I'm gonna put TEN MORE bumper stickers on my car, all about Down Syndrome. When you're sitting behind me at a stop light you can choose to read them, and read about my kid. And then, one day when you're sitting in the doctors office, hearing that the baby you tried so hard for is not quite as "perfect" as you hoped, you'll remember my car, and remember that life with Down Syndrome is NOT a curse, it is a GIFT.

Edited to add: I and one other parent commented on the blog belonging to the writer of "Bumper Sticker Thinking". There were a couple other parents as well, but our comments inluded links to videos of kids with DS being SUCCESSFUL in life. Apparently he didn't like that. Maybe that was hitting below the belt in his eyes. Anyway, he deleted those links. Interesting.

Friday, June 16, 2006

The gift of Perspective

This was originally written in Jan of 2006, but somehow it disappeared! It now appears in the book "Gifts, Mothers reflect on how children with Down Syndrome changed their lives."
Ok..I took the kids to the tubing hill (huge hill, the city has tubes out, and down you go.) but there were no tubes today, and our ONE sled (for the 3 kids) sucks so I left the boys with Angela and ran to Walmart up the street for more.

I get to Walmart, and they are all sold out of the cheap ones, but have a bunch of the $25 SUPER FAST RACER SLEDS. I wasn't planning on spending $50, but if I showed up at the hill with empty handed Angela was absolutely freak out, so I had no choice but to purchase what the sign says is "the fastest sled in the neighborhood".

When I got back to the hill , the 4 of us (Noah, Tyler, Angela and I) are standing at the top of this huuuuuuuuuge hill. It's about 200 yards, with a good 50-75 yard flat area at the bottom. We decide to send Angela down, and one of the boys was going behind her to help back up the hill. She flew. She flew so far and Noah and I were at the top of the hill laughing at how fast and far she was going.

And then I saw it.

OMG I saw it.

At the end of the "runway" at the bottom of the hill....and nobody ever makes it that about a 2 foot drop... TO A POND!!! And on the closest edge of the pond is about a 4 foot round hole of open water. Angela was headed straight for the open water.

I started freaking out and screaming "Someone grab that kid!! QUICK CATCH HER BEFORE SHE GETS TO THE POND!!!!" But the 25+ adults that she flew past just watched her go by. With sleds zooming past me, I start running down the middle of the glaze ice hill, trying not to take my eyes off her, sure she's going to go under. I can hear Tyler running and screaming behind me, and Noah behind him. Had someone had a video camera, it would have looked at one of those Chevy Chase movies. Where the kid is zooming down the hill 100 miles and hour, then cut to the fat mom, running in slow motion down a very steep, ice covered hill, with arms going like windmills, and legs not quite keeping up, mouth open in a slowed down distorted scream, and the teenagers coming from behind trying to bypass the screaming banshee mother.

I felt so very far away from her. OMG...I felt so far away.

I watched as she dropped off the edge, and SKIMMED ACROSS THE OPEN WATER, coming to a stop right smack in the middle of the pond, with her feet dangling over the edge of the ice. Laughing hysterically at her very exciting ride.

I'm still running, and screaming at her to not move. But I am fat, and slow,and Tyler got to the pond before me. He stood at the edge of the open water. I turned to look for someone else to help, and everyone had wandered away. Nobody even realized we are there. (Probably because they are all unconscious from getting whacked in the head by my flailing arms, and are now deaf from my piercing screams.)

"Go get her Tyler!" I screamed. He looked at me like I was insane. Ofcourse, I AM insane at the moment. I know it's not a very deeppool..probably 6 or 7 feet deep. I just cannot stand there knowing if shemoves she's going to go under. It occurs to me I'm a horrible swimmer.Tyler walked through the long weeds and snow to a different part of thepond, and as he stepped on the ice we could hear it crack. He looked at me, clearly scared to death and I screamed "GO!" and he did. And he carried her back to the side and I was freaking out. OMG....

I have never been so scared in my entire life. I had visions of funerals anda drowning kid and all the horrible things I could possibly think of. All Ireally wanted to do was go home.

But Angela had FUN and wanted to do it more! So we kept one person at the bottom to stop her. She never made it that far again, even if one of ushadn't been down there to stop. Evenso, we're never going to that hill again!

Monday, June 05, 2006

Ten years ago

Ten years ago, as you were flown away in a helicopter, your daddy said to me, "They think she might have Down Syndrome" I honestly had no idea what an affect those words would have on my life.

You are amazing, my little one who is sprouting up before my eyes. Each morning you wake me with the announcemet, "I have good news! It's morning!" with a smile a mile wide, eager to see what the day will bring you. I will admit, there are days here and there where I wish you could wait until it was light out to tell me this, but most of the time I secretly smile inside at the way your genuine joy brightens the room. (well, maybe it was the light switch you flipped on, but whatever.)

I marvel at the way you never forget a person's name, or a place, or the way home from any store, doctor's office or bank that we visit. The fact that you can remember a list in your head has saved me more than once. And nothing is ever lost in our house as long as you're here. Just today I lost my keys, and while I was looking for them you kept telling me, "They're in the door mom." but I didn't pay attention, you're a kid afterall. Finally when I was in my fit of frustration you opened a cabinet door and said, "See? I'm not touching them there." aaahhh I remembered. I had to hide them from you. But you don't miss a thing, do you?

I watch you struggle with your emotions and your friends. I watch you get mad at yourself when you make a mistake, and I cry inside when I can't make it easier for you. But even with all your difficulties, you persevere. You prove to those who should know better that there is no box to categorize you in. You are your own person. You know exactly who you are and you aren't about to let anyone tell you differently.

I see your confidence shine strong and true as you run a race in Special Olympics, or when you stand up in front of the entire school, singing your heart out as we watch look on, quietly wiping the tears away. Afterall, the "other moms" there have no clue what it took to get you there, do they?

You are an amazing young lady Angela. I can't wait to see what the next 10 years bring.