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!"

Thursday, December 31, 2015

2016...BRING IT!

For the last 29 years I have done what mothers around the world do; I have taken care of everyone else. The last five years have been even more intense, working on bringing kids home and parenting through some really rough stuff. Then 21 months ago came cancer, and I found myself in for the fight of my life. "Taking care of me" meant keeping me alive.

Now it is time for me to turn the tables. Oh, I have made half-hearted attempts in the past, but this is
it. This is the time for me to take care of me, from the inside out. Getting rid of all the left-over crap that hangs on my body, and replacing it with a new, healthier version of me. One who has the energy and ambition to keep up with the life we have created here. The commitment has been made. My trainer(s) are waiting, the weights are waiting, the cycles are waiting, the sweat is waiting, the pain is waiting.

So here is my "before", for all the world to see. 
Bring it on 2016.
Bring. It. ON!!!!!  

And high praise for my plastic surgeon who gave me new boobs!! If you're in the twin cities area and need a referral for a surgeon specializing in breast reconstruction, hit me up! 

Sunday, December 20, 2015

Guest Post from THE DAD

I would like to start this off by wishing everyone a "Merry Christmas"

I like to cook and on occasion I will make things from scratch, like chili, (okay, I haven't made it for a long time because Leah doesn't like it. No I don't need a new recipe because she just doesn't like chili), spaghetti, lasagna, stews, cookies, brownies, etc, etc. Unlike Leah who buys everything already made or "just add water" type of foods, or orders delivery or take out. Anyway, I learned a few things tonight while making those green wreath things with the little round cinnamon candy on them.

First, don't wait until the last minute to start making stuff. The stores wouldn't have it. I checked 4 stores for those little candy things! I could not find one package of them. Not the Dollar store, not Cub Foods, not Big Lots and my least favorite store Walmart. The guy at Walmart didn't even know what I was talking about.

Second, make sure you have everything you need, before hand, Here again I needed some ingredients that I forgot, like wax paper and a can of Spam, oops I mean PAM. Where did I go? You got it,Walmart. Wouldn't you think that wax paper would be in the aisle with the baking goods? Let me tell you, it's in the aisle with paper plates which is the aisle next to the dog food, away from the grocery part of the store.

Third, never ever measure liquids over what you are making. I didn't think that hole in that little jar of almond extract was that big.(Make sure you close the top good because that stuff pours out really fast when it tips over), I think I put three times the amount it called for.

Forth, marshmallows. Never ever put four cups of marshmallows in a four cup measuring container and put in the microwave. That stuff expands big time!

Fifth, I figured I screwed up the first batch so why not try another batch? After measuring the green dye the almond extract and vanilla extract, make sure you put it all in. I didn't. I think I was gun shy because of putting to much almond extract in the first batch and the smell of the almond extract I spilled on the counter made me not want to put it in like the recipe called for. Lets just say they aren't very green.

Sixth, ALWAYS measure your corn flakes. I figured I had a good eye for measurements and I found out I DON'T. I didn't have enough stuff to mix with the corn flakes and now not all of them are green colored.

I'm thinking of starting a cooking school. Does anyone want to enroll??

P.S. I also found out that milk chocolate chips melt better than semi sweet chocolate chips!!  

Audrey: Looking back and forward

Sooooo many people have asked me for updates on each of the kids. I thought I'd start with Audrey since I found something today.

On April 15, 2014 I posted this picture on Facebook. 
Doesn't she look like an angel?

I don't remember taking this picture.

I don't remember this dress, though Dean says it was sent to us by a friend of mine.

I really don't remember much of Audrey's first 6+ months home. Lost in a chemo-induced fog, going through the mechanical motions of each day. Taking care of the kids between naps. Feeding the kids between naps. Sitting outside, trying to soak up some sunshine until I could excuse myself from life for another nap.

I do remember one day in particular when I was trying to potty train Audrey. WHY in the WORLD did I choose THEN to potty train her? Did you all think I was crazy? Someone should have slapped me. Anyway, I had underwear on her and a potty chair in the middle of the living room. I was doing my usual "no pants" day, which is how I potty train my kids. Suddenly I thought, "Why don't I have a pull up on her instead of underwear? Yes, she might take longer, but I can barely get off the couch much less constantly be cleaning up puddles on the floor." Such a simple thought, but one that was so difficult for my brain at the time. Audrey was fully potty trained just a few days later.

My friend Ann came to help me on a couple of my really bad days. I remember sitting outside in the fresh air so thankful my friend was there when I had to make several mad dashes to the bathroom. And she brought me desitin which I desperately needed.

I have to go back and look at pictures to have any idea of Audrey's progress during those first months home. I know from videos that her communication took off, and she was so excited to have a way to tell us what she wanted instead of just pointing. Her love for music is something to be reckoned with, and she can usually be found with an iPhone in her head, and occasionally a small blue-tooth speaker that she can carry around the house. Although, it doesn't really matter if there is no music playing at a give moment, because Audrey has a song in her head at all times. She never stops dancing her own little jig, singing some crazy tune that often sounds like a Native American spiritual dance. She has been so very happy and excited to see the world.

But a couple of months ago things started to change. I'm not sure exactly when, as we were a bit pre-occupied with Angela and probably not noticing some of the more subtle changes. Finally, there came a day when I said to Dean, "I think that Audrey is regressing."

It is very common for kids with Down syndrome, as well as post institutional kids, to make big gains, then regress a bit in one area while they're working hard on another. Kind of the "two steps forward, one step back" concept. Two weeks ago we had Audrey's IEP meeting. We discussed some changes to her programming, and I expressed my concerns about just teaching her to function in the world, and lets worry about the academics later. Audrey is developmentally around 16-18 months old, and kids that age aren't sitting at a table learning letters and numbers. Her classroom staff is excellent and in complete agreement. They know what they're doing, and I'm so thankful to have staff working with my kids who truly do approach teaching as a team effort! Anyway, I also brought up my concerns about regression. Her teacher made it clear that Audrey has regressed in every single area.

Every. Single. Area.

So, here is where I tell you the hard parts about parenting Audrey, and to remind those adopting for the first time that the child you bring home may not be the child you have a year or two down the road. When Audrey came home she was SILENT. I knew she liked to sing because she did it with her foster family in Serbia. I figured the whole language barrier and new sounds she was hearing was too much for her to process. But now, a little over a year and a half home, Audrey is SO VERY LOUD!!!!!! Oh my word!!!! She chants. She sings. She screams. (not like a girl screaming when they play. This is a self-stimming noise that goes right through my spine!!) And when she screams a certain scream she is sent to "sit in the circle", while she laughs hysterically at our attempts to reign her in. She has also gotten very aggressive and will kick, hit, bite, pinch, scratch, spit, tackle, and put other kids into headlocks before you can process that is what's happening right before your eyes. While she smiles at you and bats her eyelashes. Thankfully she saves most of her aggressive behavior for school, laughing at staff's attempts to make her stop. I say "thankfully" not because I'm glad she's naughty at school, but's 6 1/2 hours less per day that I don't have to keep an eye on her. We love this child fiercely, but we also need a break for the eyes-on supervision she needs at all times.


I am pretty sure Audrey was a stripper in another life because she is so very good at being dressed one second, and when I blink my eyes she is naked. Or wearing someone else's pants. Maybe even the pants that person was JUST wearing and she has managed to get them away and onto her own body. While I blinked. This child can vaporize and re-appear in totally different clothes as we all sit here wondering what the hell just happened.

Stripping can happen anywhere, such as while we wait in line to see Santa. And I am holding her hand. And without ever letting go. I listen to her sing and feel her dancing around as I talk to the people next to us, when I suddenly realize they are looking down with their mouths hanging open And so I, too, look down to see Audrey smiling the biggest smile at me, and her jacket and shirt are now hanging from our joined hands. And her pants are at her ankles. And where the hell are her shoes and socks???????  This is something that happens multiple times per day. And don't even try to say, "You must not be watching her close enough" because it happens at school too, where she has a 1:1 staff person with her at all times. On the bus she is strapped into a harness for the 3 minute and 42 second ride home. When she arrives she is usually missing her jacket, shirt, shoes, socks and is working on her pants when they arrive at our driveway. How is she even able to do this strapped into the harness?

One of her best moments was when I had a county person here for a visit for one of the kids. Audrey was outside jumping on the trampoline when I ran to answer the door. When I ran back to bring the kids up to the house Audrey naked, laughing and jumping on the trampoline with wild abandon. I looked up to see the county rep. watching out the window, trying not to laugh.


In addition to stripping, Audrey also changes clothes multiple times per day. We still haven't figured out if this is a sensory thing or a developmental stage. Probably a combination of the two. She will find anything to wear. I'm considering putting together a dress-up box for her, but really the "dress up as someone/something else" part is beyond her yet. She just wants to change clothes. I have taken all of the clothes out of her bedroom to save me having to pick up the mess of strewn clothes at the end of every day.

Have I mentioned that Audrey is extremely hyperactive? Now, Angela was very hyperactive when she was little, and there were many professionals in her life who, along the way, commented, "I have never seen a child with Down syndrome quite so hyperactive."

Let me tell you, Angela was a sloth compared to Audrey. Remember the cartoon of the Tasmanian devil? This is Audrey, on one of her calmer days. Complete with the noises.

And so, where Audrey is concerned, our focus over the next few months will be figuring out exactly what is happening in that pretty little head of hers. Maybe we won't find out at all (look, it took us 19 years to get Angela diagnosed!) but we have to figure out something to help her. She is not even functioning well in the world right now. In the meantime we're looking at moving her to a different program. Like I said above, Audrey's staff at school are excellent. But these kids with severe institutional delays, behaviors and attachment problems? They are no walk in the park and not everyone can be expected to know how to manage it all. We don't know how, and we sure can't expect her school staff to just know how either. Thankfully our district does have another option for Audrey, and I think it will be a very good fit for her. A place where she can learn to function in the world, and if she learns some academics along the way? That would be just great!

So that is my update on Audrey. She really is a beautiful little girl, but man, she is a HANDFUL!! I'm so very grateful we have to parental tools needed to get her to adulthood. To help her become the most independent she is capable of being. To allow her to see the world in all it's glory while the rest of us run to keep up with her. 

Tuesday, December 01, 2015

The end of a season

Do you know what today is? Well let me tell you! Its the end of the season of my life called "cancer".  Yes, I finished treatment ages ago (16 months ago, in fact), but I've still been dealing with this stupid reconstruction process. 14 months ago I had a bilateral mastectomy, and today I'm in surgery, having my horribly uncomfortable tissue expanders removed and replaced with implants. Also, because of the way breast reconstruction works, it also involves liposuction at the sides of the ribcage to even everything out.

Looking back at the last 20 or so months since I was diagnosed, there are some things I wish I had known. Here is a letter to that self.

Dear Me,

Today you were told the worst news you've ever heard in your life. You have breast cancer. You felt your knees give out beneath you as you best friend and life partner held you up. You sobbed the longest, loudest sobs. As you cried, noises escaped from your mouth you didn't know were even possible. Primal fear. What you are feeling now is primal fear.

I'm not going to tell you, "Don't worry, you'll be fine." because its impossible to not worry. You're going to spend the next few days (or even weeks or months!) numb. You will think you're losing your mind because you keep forgetting odd little things and can't concentrate on anything. Its ok. You're normal. Your brain is on overload and it can only process so much right now. Remember that primal fear? This is part of it. You are in survival mode. Don't worry about the laundry right now. If it doesn't get done the world won't end, but if it helps you by all means do it.

Start a list of questions for your doctor. Even if they seem silly, write them down.

Do NOT, I repeat DO NOT set any kind of timeline for when you'll be done with treatments and/or surgeries. There is no way to predict how each woman will respond to various steps in the process and its easy to get disappointed when your treatment or healing doesn't go according plan. Mine was supposed to be a "three month speed bump" in my life, and here I am 20 months later, just finishing up. Don't count on "you won't need chemo" or any other treatment predictors until EVERY test has been completed.

Everyone is going to send you emails and private messages with the most outrageous "cures" for your cancer. Use your "delete" button generously. Everyone means well and only want whats best for you, but they forget your doctors spent years in medical school, and more years treating other women just like you. He or she knows the latest TRUE research. Listen to your doctors, but if you don't feel comfortable get a second or 3rd opinion.

Nipples aren't necessary for life, and if you don't have them there is no "show through" so no need to wear a bra. Oh, and you can buy nipples online. For real. You can order any color you want.

When something doesn't sit right with you, trust your gut and ask questions. Remember that you are your own best advocate. If you don't feel comfortable speaking up, have your partner help you.

Speaking of your partner, he's hurting too, in totally different ways. He's scared to death about losing you. Suddenly the weight of the entire household is on his shoulders. Remember to encourage him to take a break when he needs it. Spending a few hours with his friends or brothers can make a world of difference for him.

Sleep. Sleep and don't feel guilty for sleeping. Your body needs to regenerate healthy cells and the rest of you needs to rest while that happens.

Everything tastes bad when you're on chemo. Moutain Dew will taste like salt water, but banana cream pie blizzards taste heavenly. Oh, and Jimmy Johns delivers to the chemo clinic.

In the coming weeks you're going to be very run down. Try to organize your house in such a way that if someone comes in to help, its easy for them to see what needs to be done. Let go of your need to control all things, even if that means turning on the white noise machine in the bedroom so you can't hear whats happening in the rest of the house. Resist the urge to take over. RESIST!

Don't try to potty train a child during chemo. Really, its a terrible idea.

You may look at your body and hate every scar, or you may embrace them as badges of honor. Whatever floats your boat, but do not EVER be ashamed of those scars.

Let the kids do washable marker art on your head. It feels awesome and they have a blast.

Steroids really do make you crabby. When you notice you're snapping at people, its better to just excuse yourself for a nap.

Chemo brain is a real thing. Unfortunately sometimes it sticks with you long after the chemo is complete.

You have a long road ahead of you. Right now you're trying to see into the future and its just plain impossible. Try your best to live for today. Notice the smiles on the kids' faces. Notice when they seem worried or anxious. Take the time to give them an extra hug. Let them sit on the bed with you and watch movies while you nap. Let them take care of you in their own ways. Its really important to them.

You don't need to make excuses to anyone. When you feel tired, its ok to say, "You know, I know you wanted to have coffee today, but I'm just too tired to even listen to talking, much less get out of bed."

Its ok to complain, and its ok to cry. But, if you're feeling overwhelmed by it all, its also ok to talk to your doctor about a little pharmaceutical help.

Just say "No" to Effexor. Its terrible to get off of!

If you're sitting in the warm summer sunshine shivering, take your temperature. You're probably running a fever. Likewise, if you feel you can't make it up a flight of stairs without sitting to rest, its time for some IV fluids!

Take care of yourself however you feel is right for YOU.

 A lot of you reading are cancer survivors yourself. What would you tell yourself on that day you were diagnosed?