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!"

Thursday, September 11, 2014

The Next Phase

The last few months have been so crazy. I went from being a "new" parent to a cancer patient in just the blink of an eye. I learned about breasts and breast cancer. I learned about vulnerability.

I walked past store windows and was startled by my reflection. One day I was in the bathroom with one of the kids when I turned and jumped when I saw a man standing behind me…only it was my own reflection in the mirror. I learned to recognized this new image. I learned to be comfortable without hair. I gained a tiny bit more confidence and could empathize more with my kids who get stared at often.

I learned to make decisions based on what I know today, but that the information I have tomorrow may change the decision. I learned to stop second guessing myself. I learned to trust my decisions no matter how difficult they may be.

I've learned to accept help, which was possibly the most difficult lesson in this whole journey. I've learned I have TRUE friends all over the country... all over the world, and that I needn't have met them for them to make it into that category.

I have NOT learned to be comfortable with the word "cancer". I still have trouble saying, "I have/had breast cancer." Those words aren't for me. When a situation arises that I must utter the phrase my knees become weak and my stomach lurches. It doesn't matter who I'm talking to, how well I know them, or if they are a complete stranger,  I will almost always find a tear running down my cheek. I'm not usually a crier, but now I cry every day. Every.single.day.

I have survived diagnosis.
I have survived humiliating examinations.
I have survived treatment.
I have survived discussing my breasts and nipples as if they were my big toe.

My spiritual self is intact. Perhaps its a bit stronger in some areas and weaker in others, but my physical self? It needs some work. Not just my breasts, but my entire body. Right now it is time to work on the breasts. I am stunned…I feel as if I'm walking in a dream…I can't believe this is what is ahead of me. I try to remind myself that, like childbirth, thousands of women go through this every day. I can do it. I will be fine. Still I must go through the motions of making sure Dean has all the information and documents he needs "just in case".

There is a lot of work ahead of me. Ahead of us. This is a four month process and then I must work on the other parts of my physical self. The overweight parts. The "not working as well as they should" parts. The parts that need to carry me another 40 years.

Tomorrow is the day I start.

I am ready. 

Friday, September 05, 2014

One week

In one week part of my life will change.

In one week my body will change.

One week.

In one week I will have my breasts removed.


I don't have a lot to say to anyone lately. I really would like to completely disconnect from the world and play hermit.


Thursday, September 04, 2014

Conversing!

We are loving watching the communication that is happening here with the kids. Asher and Abel's sign vocabulary is growing by leaps and bounds! Both have 1:1 support staff in school who are fluent in ASL, plus we sign at home as well. (I'm a former ASL interpreter.) Here's a conversation we watched the boys have this morning. SO FUN, especially when you think of the fact 18 months ago Abel had zero ability to communicate in English or Serbian, and Asher had no ability 2 1/2 years ago.

The scene: Asher and Abel are waiting outside on the front step for Dad to bring them to the bus. Dad gets something out of the car, locks the door and goes into the house.

Abel pointing at car door handle: "Papa opened the car."
Asher: "Papa's car"
Abel: "You open it." 
Asher: "Papa's car. Yes."
Abel, touching the handle: "Open it."
Mom (from the house) "Abel don't touch."
Abel: "Mom said no. Don't touch. Open it."
Asher: "Mom said no."

Airplane flies over. Abel looks at the sky: "There's an airplane. Up there." (takes Asher's chin and makes him look at the sky.) "You do it. Airplane." 
Asher: Airplane
Abel: "Eating is done. I need to go to the bathroom." 
Asher: "Bathroom." (points to the house."
Abel: "Mom! I need to go to the bathroom!" 

Wednesday, September 03, 2014

Power Cafe!

Remember back in June when Angela turned 18? Do you know what comes with turning 18? Me panicking about Angela getting a job. I have a few friends in the DS community who have solved the problem not only for their own child, but they have opened businesses to employ others who have disabilities as well.

My friend Galit is a long-time reader here at The Garden. She lives in the Boston area and has started the MOST awesome project!!!



The Power Cafe is a coffee shop, but not just any coffee shop! The Power cafe will be staffed entirely by people with physical and/or developmental disabilities! Galit has started an Indiegogo campaign. Please go have a look and, if you're able, help support this venue that will be so beneficial to the disability community of Boston!

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.
*************************************

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. 

*************************************

Axel was walking to the bus stop last week. 

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

Axel: "Bye Dad. Peace out!"
*************************************

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.


*************************************

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. 

*************************************

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. 

*************************************
Asher is spending his summer playing with or in water.