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!"

Monday, November 24, 2014

4 months PFC

PFC = Post Final Chemo

My hair is the strangest color! It is really salt and pepper, but the color changes depending upon the lighting. If I'm in the shadows it is black. If the light is shining on it, it is silver. It is not silver tipped. The silver hairs are silver the entire length. The only thing I don't like is the fact its growing into a faux hawk. Yes, people pay to have that hairstyle, which I happen to think is dumb. Its not something I would choose for myself. LOL I'm anxious for it to get a little longer so it lays down.

One good thing though is I have significantly more hair than I did before chemo!

Saturday, November 22, 2014

His name is Asher: 3 years home

With the first step through the doors the familiar smell of the institution assaults my nose, the heavy odor of cooking smells overwhelming me. Five of us squeeze into the tiny elevator as I try to suppress the urge to point out it was only built for two, maybe three people.  It is a finicky elevator, and although it is new sometimes you have to jump a little bit to make it go. We arrive on the second floor and the social worker pushes open the manual door, all of us spilling out into the hallway as the wails of a child are heard from far off in the building. 

The head psychologist leads us down the hallway where three toddlers are sitting at a tiny table eating their lunch. She points to the child who's back is to me, his shaved head and tiny shoulders hunched over the plate of mush in front of him. 

"This is Lazar" she says as she touches his shoulder. 

The boy freezes, his spoonful of food halfway to his mouth. After a second he grunts, putting the spoon  in his mouth. He continues to eat.

Quietly I move to his side, kneeling beside the table next to him I put my hand on his shoulder. "Hello Lazo." I say in a quiet voice. His eyes never leave his plate as he pulls it closer to him, protecting it in case I should try taking it away. I feel a tear run down my cheek as I realize this tiny toddler, who appears to be two or three years old is really my seven year old son.

A minute later he is done eating. I gently use his towel-bib to wipe his face then offer my hand for him to hold. He willingly wraps his tiny fingers around my index finger, toddling alongside me down the hallway to the playroom. It is here I can finally get a good look at him. He releases my finger and moves into the room, quickly grabbing a toy to dangle. He looks at me warily, hiding behind his arm, his face expressionless and his eyes glassy. He stares off into the distance. At nothing.

When the psychologist says something to him his only response is to freeze and make a tiny grunting sound. 

Blank. I have never seen a child so void of expression.

"What do you think?" the social worker asks. "Do you accept this child? Does he meet your expectations?"

"Yes." I say.  "Yes this is my son."

And we called him Asher.

Over the next 10 days I learn all I can about him. He has only recently started to walk. He is extremely underweight. He is so very hard to reach.

But slowly….

Ever so slowly…

he comes to life.

Three years ago today I laid eyes upon my son for the very first time. This child who was lost within the walls of a Serbian institution found his way into our lives and hearts. This child who was so painfully afraid of the world,

now wanting to see,

to do



to try.

Papa is the favorite around here, but Asher is Mama's boy. So affectionate and loving. Eager to see the world and all the wonders it holds for him. Every day, as I watch my son so full of joy and wonder, I thank God for allowing us this precious gift.

Genesis 30:13 And Leah said, "Happy am I, for the daughters will call me blessed: and she called him Asher.

Deuteronomy 33:24 About Asher he said: "Most blessed of sons is Asher; let him be favored by his brothers, and let him bathe his feet in oil."

Friday, November 21, 2014

Not just a boob job

So many people are of the mistaken impression that having breast reconstruction is a good way to have a breast augmentation (aka a "boob job") covered by health insurance. What people don't realize is that reconstructed breasts are not the same as augmented breasts, and that having their breasts reconstructed is a nightmare for most women.

We didn't WANT this! We don't want the scars. We don't want the pain. We don't want what often ends up being multiple surgeries, and the scars they leave behind, in the hopes we will someday look normal. We have cancer to thank for that.

If you are interested in purchasing the tshirt pictured above, please follow this link! 

Tuesday, November 18, 2014

Three years

Three years ago I boarded a plane for Belgrade, Serbia. I was so very anxious to meet our newest son!

Lets Not Talk About It

I can talk about a lot of things.

I can talk about nipples, I can talk about breasts.

I can talk about surgeries and implants and tissue expanders.

But, it makes my knees weak to hear someone describe in detail how a reconstructed nipple is formed (cut an "s" shape, twist those pieces around and sew them together) or how incisions are made and breast implants or expanders inserted.

When my plastic surgeon says things like, "I need you to be size x so that I have enough skin to cover a size X implant". No. I am sorry. I cannot hear that. I cannot hear how you are going to stretch my skin and the types of sutures you will use to put it all back together.

Don't think you can do anything to me under light sedation "just enough to relax you" because I do not want to hear noises, feel tugging or other sensations, or anything else that there is even a slight chance I will remember. Just knock me out and get it over with. I don't need the details.

When you come here and don't want to read the details, just hit that little X up in the corner, OK? 

Friday, November 14, 2014

Just a Bra

Today I am doing some much necessary cleaning; things that haven't been done in months but now that I'm feeling so much better its time to get them done. Besides, we're having people over tomorrow night so its a good motivator.

I can't believe the pile of clothes, shopping bags and just odds and ends of life that have accumulated in this corner of our bedroom. I started sorting everything into piles, getting distracted here and there by my finds.

And then I found the bra.

I haven't worn a bra in two months. Not only do I not have breasts, but even if I did, I couldn't wear a bra if I wanted. I have these rolls of extra skin and fat under my arms, left over skin that used to cover breast tissue and lymph nodes. In the breast cancer community these flaps of skin are referred to as "mud flaps". As my tissue expanders are filled some of that skin will be pulled forward, the rest will be removed at the time of my final surgery. They are very uncomfortable and awkward, and they make certain clothing, like bras, impossible for me to wear.

I never liked wearing a bra. In fact, I would buy clothes that allowed me to get away with not wearing one just so I could be more comfortable. But today, this bra, has brought me to tears for the first time in months. It is a symbol of how my life has changed since cancer.

On the outside I may seem like the old me, but on the inside…on the inside I am a very different person. I am battered and bruised. My mind and spirit are scarred. But, like a good make up artist, I can hide my scars from the rest of the world, for the most part living my life like I used to. But that one day that I stumble upon a bra I used to wear can bring me to sobbing tears in the middle of my bedroom floor.

Thursday, November 13, 2014

Good morning parents! Its BUS time!

Excuse me while I step onto my soapbox for a few minutes.  Note: This post is in reference to special ed. transportation. If you don't have a kid in special ed, this transportation works differently than regular ed transportation. Buses usually go right to a kid's driveway, and they wait for a few minutes if the kid is not there on time.

Guess what? School started 2 1/2 months ago. We're in a routine. We know the times for everything, including what time the bus comes. We are not perfect parents, by any means, but one thing we are, is ON TIME for the freaking bus!  We have five kids to get ready and four buses coming to our house every morning, and every morning each of our kids is waiting for the bus ON TIME. Every day. It has been no less than 5 years since anyone in this house missed a bus, and that was when we had only one kid here.

The bus drivers are required to be at the bus garage 30 minutes before starting their routes, and the entire fleet pulls out of the lot in the same order, at the same time, every morning.

But at least three days a week our buses are late - x 4 buses - because other people can't get their kids out the door on time. Guess what! Maybe you need to start your morning routine earlier? While you are rushing your kid around, scrambling to throw on their winter gear while the bus is already at your driveway, other people's kids are standing at their designated bus stops in the cold. They were on time. You are not.

I have dealt with lots of behavior stuff in the past, particularly with Angela, that centered around the anxiety of having that dang bus come to the house. For two years we opted to drive her instead, removing the anxiety completely. That worked great for her, and she still arrived to school on time. Sometimes we pulled into the school lot at the same time as the bus she would have ridden. Part of my reason for doing that was it is not considerate of the bus driver or all the other kids on the bus - or the parents who got them there - when they're sitting waiting for my kid every day. So we opted to drive her instead.

So here we are, another morning standing in the cold and snow waiting for a bus that is almost 15 minutes late because the same parents are late….again…. Once in awhile its not a big deal, but EVERY SINGLE DAY???? Umm no. Get up earlier, get your kid ready earlier, and get yourself to the bus on time like everyone else does.

End of rant. I will now take my superior ass to Abel's bus, the one where HE is the problem child and the other parents are mad at us.

Monday, November 10, 2014

Here Comes Winter

Sunday night:
We live in Minnesota, land of 10,000 lakes and a lot of cold. Last year we, along with the rest of the country, put up with the Polar Vortex multiple times (would that be Polar Vorti?) making it one of our coldest, and longest, winters on record.

For the last several days there have been rumblings of a big winter storm coming. Its a little early for this type of storm, but most of us remember THE BIG ONE of Halloween, 1991. It brought with it weeks of dealing with washboard roads and general mess.

This morning we woke up to this headline

A headline like this causes mothers - ok, maybe a few dads - to move into panic mode. Its time to hunker down!!!

Are there groceries on hand?

Where is all the winter gear? Does everyone have boots? Snowpants? WHERE are all the snowpants?

OMG where are the snow pants?????

Is the snowblower running and is there gas for it?

This kind of preparation was not on my agenda for today. I had planned on getting all laundry and the kids' bedding cleaned and their rooms thoroughly cleaned. Dean is sick so he would be trying to get some rest. (this ended up not working so well.)

I ran around here like a semi-organized maniac all day. First, got Audrey's laundry going. (thats 2 loads) Next into the washer was a whole load of hats, gloves and mittens that needed to be cleaned. While those were going Tyler got everyone outside for some fresh air and I made a trip to Costo to stock up on a few things. I needed to get boots for Abel (which they didn't have) and winter coat and snowpants for Audrey.

When I came home I focused on the girls' bedroom, getting all their bedding, including comforters washed and dried. (three more loads) I went through their collection of jackets and packed away all the light-weight, off season things so Audrey stops dragging them around the house. Angela helped me clean up Audrey's toys and get the room vacuumed.

Next was a load of 5 winter coats and 4 pr snow pants that needed to be washed. When that was done Axel's laundry went in. As I type Asher's clothes are in the wash.

Have you kept tally on the loads of laundry? That's NINE loads of laundry I've done today! I still have about six more to go since so much time was spent doing bedding and winter gear. Normally I do laundry throughout the week but with my surgical incisions my mobility has been limited. Everything is so far behind so I'm busting butt trying to get caught up.

Dean and Tyler moved the motorcycles around to get the snowblower to the front where it is easily accessible.

At least I know all the kids will be appropriately dressed for the weather that is threatening. Ok, maybe not Abel.

Monday morning: Welcome to winter! The snow arrived around midnight last night and we expect to get around 10 inches in our area. The kids are all wound up because they may end up coming home early today. I hate the snow that arrived so early. It is going to make our winter soooo much longer.

Wednesday, November 05, 2014

School Pics

We finally have everyone's school pictures back! With a couple of retakes they turned to great this year. Audrey? Yeah, she is the happiest girl I know…until a camera comes out! You will notice three of the kids are wearing coordinated colors. This was a weak attempt to have coordinating pictures on the wall.  Of course when Axel's picture day rolled around I couldn't find his matching shirt. That's just how we roll around here!

Audrey 1st grade, age 10

Axel 7th grade, age 14

Abel 5th grade, age 11

Asher, 2nd grade, age 10

And of course Angela, 12th grade, age 18

Sunday, November 02, 2014

November Thankful 1

I am so very thankful for the most amazing man ever. Every single day since I was diagnosed, Dean has said or done something special  that shows me how important I am to him. He doesn't have to try, it just comes naturally to him. This last seven months have been the most difficult of my life but God gave me Dean to help get me through, to get our family through. For this, I am thankful.