Blogging about life and raising our five 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!"

Tuesday, September 02, 2014

Back to School 2014

 It's time for our annual "Back to School" picture!!!

Here all the pictures through the years. Scroll through the pics and see for yourself.


2008

2009

2010

2011

2012

2013

2014

Sunday, August 31, 2014

These Eyes

These eyes


What did they see?

In their life before a family, I don't doubt they saw terrible things.


These eyes



Did they fear that one person who came to him each day?

Did he look on in hunger as the food was taken away?


These eyes


Did they wonder where the people went?

Did they worry for the child who cried next to him?


These eyes


What do they know? 

What memories do they hold?


Sometimes I am thankful they cannot tell me. 

Wednesday, August 27, 2014

Henna Tattoo Crown

Dean and I went to the Minnesota State Fair tonight. A great date night that he and I look forward to every year. We got a bit sidetracked by the henna tattoo both. I've been wanting to do a henna crown for awhile now. This is my last chance since my hair is starting to grow back. I love it! The henna work was done by Shana at Redfox Henna











Tuesday, August 26, 2014

Saturday, August 23, 2014

Summer Bucket List

I think Dean and I need a bucket list for next summer to make up for the things we didn't do with the kids this summer.

Normally I do one fun outing during the week with the kids. A trip to the zoo or some community event. Then on the weekend we do one family outing. This summer? This was "The Summer that Mommy Laid on the Couch."

We did exactly four fun things. No wonder my kids want to go back to school so bad. Its not just about keeping kids busy (though that is a lot of it) it is also about showing the world to our new kids.

Do you know Audrey doesn't remember me with hair? I  show her pictures of me with hair and she doesn't know who it is. That makes me sad. She'll get over it, I know, and so will I. At the moment it makes me a little bit sad.

So, I'm off to work on the bucket list for next summer. Some weekend road trips. Some local attractions that all kids should see. Living, that's what we'll be doing. Living.


Scars

I've been quiet lately. I have all kinds of things to say, I just don't know how to say them or where to start. I'm at a loss for words.

On September 12th I'll be having a bilateral mastectomy with immediate reconstruction. I wish there were a way to know what the end result will be. There is no way to predict how I will heal. Breast cancer stays with you. Forever.

Please watch this video. Breast cancer is not a pink ribbon. Breast cancer is about survival. It is also about the 39,620 men and women per year in the US who don't survive. ( http://www.breastcancer.org/symptoms/understand_bc/statistics ) If breast cancer stayed in the breast people wouldn't be dying from it.




Wednesday, August 13, 2014

On the Path

I didn't see it coming.
I was blissfully unaware,
living my life
as if it wasn't possible.

There was no warning.
That unexpected turn in our path
causing me to lose myself
as I tripped on the unknowns.

It is hard to fall gracefully,
all willy nilly and out of control,
trying to right oneself
while looking eternity in the eye.

The battle to regain composure
hands at the ready
to grab hold
of anything that looks stable.

Finally steady
Brushing off the dust
a cleansing breath
standing tall and continuing on.







Saturday, August 09, 2014

Asher's love of water

The first day I met Asher he was given a "bath" in the sink of his room in the institution. Its kind of like a farm sink at counter height. You can kind of see it here in this picture of Abel in the same institution. (At 10 years old Abel was still in diapers and this is the diaper changing station. A couple weeks home and he was out of diapers. )


When the children in Asher's group were given a "bath" they were made to stand in the sink while they were hosed off with the sprayer. I watched him desperately try to put his hands in the water only to have them swatted away, as if he was a naughty little boy for touching the water. My heart broke for him. He just wanted to touch the water. I had no idea how badly. 

For many adoptive parents getting custody of their child is synonymous with the "first bath". It means an opportunity to get rid of the institutional stench that emanates from the child's every pore. (It actually takes weeks to get rid of that smell.) For some newly adopted children this first bath is an extremely traumatic experience. Not only are they in a new environment , but they may have never experienced sitting in water before.  This is Asher's first bath. No trauma, but a big smile about half way through. So happy he can touch the water! (I would not normally post bath videos. You only see his back in this one, except for a few seconds. Originally this video was made so his dad at home could share in the first bath experience.) 

From that first bath until today Asher has been obsessed with water. I don't know if the word "obsessed" even comes close to describing his fascination. In the summer, if its nice outside I need only to turn the hose to a trickle and it will keep him busy for hours.  Sometimes with the hose he will put it right to his ear, letting that ice cold water shoot into his ear. 





















Back in Time

I was having trouble uploading videos to youtube tonight. While I was waiting for things to process I was looking at some old videos of Angela. This is one of my favorites. She was 11 at the time. I love listening to her little voice.




Saturday, August 02, 2014

A Little bit of Audrey

Audrey has been home 4 1/2 months now. Last week we put up a small pool. Yesterday she was scared to death of it. Today she watched Asher and Abel splash around and decided she wanted in!


Audrey LOVES music and will do almost anything if you put it to music. She is imitating more and more. It is so fun to see her coming out of her shell! Her understanding of English is increasing daily. She follows directions really well. Sometimes one of the boys don't understand a direction so she will do it for them! Please excuse my annoying singing in this video! (the boys in the pool to the side make it look really deep. Its only waist deep on them. They LOVE it!)




Friday, August 01, 2014

Life in the Garden

I found Angela and Dudley laying on the floor.


Me: Angela, what are you doing?

Angela: Resisting arrest!

We may have trouble on hour hands in the future.
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Some of the kids are done with summer school, some are half way done and others are just starting, This is because I don't have enough trouble remembering the daily schedule from one day to the next. 

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Axel was walking to the bus stop last week. 

Dean: "Bye Axel! Have a great day! Love you buddy!"

Axel: "Bye Dad. Peace out!"
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My friend Mary brought over a lego table her kids had outgrown. Axel is in heaven. He builds everything as symmetrical as he possible can.


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When Abel is done with therapy, if he didn't have any problems, he gets to spin a plate. Not an activity everyone would choose, but its his favorite activity and that's what's important! He is a master plate spinner. Lot of kids at the therapy center are trying to figure out what's so neat about this plate spinning thing and are now trying to compete with him. Here's a really short video. He hadn't quite yet gotten "into" it. In other words, I could still talk to him. Another minute and he is 100% engrossed and the plate spins for several seconds at a time. If you're familiar with the sport of Curling, he brushes the table similar to the way curlers brush the ice with their brooms. 

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My son Tyler has been helping us a lot this summer. I don't know what we would have done without him! He loves to do Audrey's hair. It is almost long enough to get into one ponytail. 

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Asher is spending his summer playing with or in water. 


Wednesday, July 30, 2014

Take that, cancer!

Its done! Chemo is done!!

I had my last treatment on July 17th. Unfortunately the fatigue is cumulative with each round, so even though I did not have that evil Neulasta shot - so no bone pain - I am still dealing with some fatigue on day 14. (normally its gone by day 10) I had one day that I was feeling pretty good, and even posted something on Facebook about being back. Apparently it was caffeine talking. A couple days later my counts dropped further and I got sick. Today my neutrophils are at 400. I've been on a broad spectrum oran antibiotic for a week and will continue for a few more days. Without that I would be in the hospital on IV antibiotics.

Anyway, even though I'm still dealing with some side effects, chemo is done, and that is a huge thing! Clearly worth celebrating!

I have spent the last four months researching all of my option related to mastectomy and reconstruction while taking into consideration the risks associated with each decision.  I was, and still am, happy with my own boobs. I just don't want them to kill me. I have a 1/4 chance of getting cancer again if I leave them alone. I don't want cancer again.

Today I met with my plastic surgeon, Dr. L. I have used her in the past and knew she did breast reconstruction. She did her plastics training at Mayo clinic, and she is awesome! I have to say, my boobs are really the only part of me that I truly am happy with. I am NOT happy to be faced with the decision of whether or not to do a mastectomy.

First Dr. L.  looked at the size and shape of my breasts and the current scars from my lumpectomy and lymph node biopsies. Most women want to have a shape similar to their natural breasts. Based on where my scars are she thinks I am a good candidate for nipple sparing surgery. This is a big deal, because it means the end result is much closer to a natural breast. I really want to be comfortable looking at my own body, much less my husband. It is impossible to know until the doctors are in surgery and can take a good look at the nipple and surrounding tissue, but for now it looks like a good option.

Because there isn't cancerous tissue involved I can have reconstruction at the same time as mastectomy. That means as soon as the breast tissue is removed the doctor would place a tissue expander under the muscle of the chest wall. This would be left in for several months and slowly expanded through a port similar to the port in my chest. Once they're the right size (similar to my current natural size) I would have another out-patient surgery to exchange the expanders for implants.

Next we talked about the type of implants she recommends for me and why. I have been researching implants for months now. Who knew there were so many? I thought I had decided I would prefer a cohesive gel implant, but once I got to ask some questions and see them for myself I don't think so. I was able to feel all the different types of implants and see how they would look in position.  Dr. L. also explained that at the top of the chest there is often a cavity after mastectomy. She uses fat grafting to fill in that area.

Then we discussed timing of surgery. If I need to have radiation it is better to have the mastectomy done before radiation. After radiation nipple sparing is not an option. After radiation the skin will loose all its elasticity. The loss of elasticity means I would need to have a dorsal flap procedure done to have enough skin to create a breast. There is also another type of flap procedure, using abdominal tissue, but I am not a candidate for that.


Needless to say, I would prefer not to have the flap procedure done. More scaring. More risk of problems. Having radiation after mastectomy comes with its on set of problems an is certainly an issue to keep in mind, and I still need to find out if I can go without radiation if I'm having a mastectomy and have already had chemo.

I left feeling like I was, for once, doing something that was proactive instead of reactive. Chemo is reactive. Radiation is reactive. Mastectomy to prevent the recurrence of breast cancer in one breast, or a new diagnosis in the other is a proactive approach. Next week I will meet with my oncologist as well as my other surgeon (He and Dr. L would work together to do my mastectomy and reconstruction.)

There is  no way to 100% eliminate all risk of breast cancer recurrence or to eliminate the risk of developing cancer in the other breast, but mastectomy is as close to zero as a woman can get.