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, December 23, 2019

Christmas Time is Here

The day before Christmas Eve. 

As I decorate Christmas cookies, I listen to “Christmas Time is Here”. I listen and watch, as my children who are former orphans attempt to sing along, each in his or her own way. Once dances, one rocks, one chants. It has taken years to reach this point. 

And my heart aches.

It aches because I am reminded of all the children who are NOT celebrating Christmas because they have no family. 

Kids right here, in my world. 
In your world. 
In my country. 
In your country. 
In my state. 
In your state. 
In my town. 
In your town. 
In my neighborhood. 
In your neighborhood. 
They are everywhere. 
They are in institutions. 
They are in hospitals. 
They are in foster care. 
They are on the streets. 

Some are now legal adults who never found acceptance into a family. They will belong to no-one until they create their own.

Chances are as you walk through Target, rushing to complete your last-minute shopping, you are passing a foster child who is "faking it" again this year, because they have no family. If they were really lucky last year, they received a gift, which has likely disappeared in yet another transfer to yet another foster home. They refuse to get their hopes up about what this Christmas will or won't bring.

No, we cannot fix all the broken pieces of a child’s heart and spirit. What is visible to us is only the tip of the iceberg of a child’s brokenness. So much hides underneath!  We can put bandaids on the wounds we find, help them heal as much as possible, but the scars will always remain. It is never easy. It is always hard. Life altering events are like that. 

All you have to do is open a door. 

We have room here. 


Do you?

Wednesday, December 18, 2019

We Have Room Here

Our documentary is being released for it's first showing!

Some of you are blinking, thinking "Did I read that right?" Yes, yes you did! Nearly two years ago we were approached by a local photo journalist, Patrick Sheppard from Bright Circle Productions, who knows our family, and asked about doing a documentary. "Everyone wants to know how your family works!" he said. After some discussion we started filming in April 2018.

Then in October 2018, Chris Ulner from Special Books By Special Kids interviewed our family. He is so much fun to work with! Chris in person is exactly like Chris in video (if it's possible, his eyes are even more blue!) and he has an fantastic way of interacting with the kids. You can check out his video here. By the way, it is reaching 1 million views. Feel free to share to push us over the edge!

In the meantime, we were still filming with Bright Circle Productions, finally wrapping up in June with Axel's graduation. It took some time to pull the last pieces together, but FINALLY we have a release date of January 11th. That is a local theater release, and there will be another small group hosted by the Highland Friendship Club on January 14th. I'm not sure what the producer's plans are after that. He'll either do another theater showing, or post it as a download.


Asher joined the circus!

For several years I have knowns about a circus school in our area. Who knew there was such a thing? Circus Juventas is a pretty amazing place. The first time I visited, I was fascinated by all the apparatus, and could picture Asher on each one of them. If you've been around here for a long time, you know Asher LOVES to hang,  climb, be up high, and inside of things. Circus school seemed a perfect fit, so I got him on a waitlist.

Finally in September he was able to start. Oh this boy! He is SO HAPPY at Circus school!

His very first day, the instructors quickly learned that Asher has NO FEAR, is willing to try virtually anything they suggest, and he is VERY strong! His favorite is the trampoline, where he is learning to jump very high, so that he can - get this - land either standing or sitting in the window of a mock building next to the trampoline.

Here is an example of what the youngest entertainers do at the circus performance.

Since Asher has just started, he has to be in circus school several months before being allowed to perform. This year is spent learning skills on the different apparatus. I can't wait until his next class (after Christmas) to show you what he can do on trapeze! For now, here are some fun pics and a video.








Wednesday, December 11, 2019

Christmas Sweaters

I love Christmas. A lot. 

I have always loved Christmas, but there were a few years that I really struggled to feel "it". Some years it was just too much work! One year when Angela was just starting to walk, I didn't put the tree up until the day before Christmas and I took it down the day after. Apparently my other kids weren't feeling it either since they didn't seem to care. 

When Dean and I first met and decided to share house, our home sat far back off the street, up a very steep hill. We put a few lights on the roof, and having my son Tyler come over to climb up there became a tradition. When we found our current house I was excited at the outdoor decorating possibilities. The entry area seemed perfect for Halloween fun, and the rest of the yard would lend itself to fun Christmas decorating. 

We love our new neighborhood, and spent that first summer getting to know our neighbors, with Dean warning them about my tendency to sometimes go overboard with lights. There are a lot of empty nesters on our quiet street, who are past the age of spending hours trying to reach as high as possible with a string of lights. Our first Christmas season here was unusually warm, bringing 70* temperatures in November. It felt odd to be hanging Christmas lights in the trees wearing a t-shirt. I imagined this is how it feels in other parts of our country that don't get buried under feet of snow and frigid temperatures. 

We're celebrating our fourth Christmas in this home. I start setting up the outdoor lights in early November, then on Thanksgiving evening, when the dinner is done, we have a little lighting ceremony in the card. And by ceremony, I mean the family stands in the street and I run around flipping switches and plugging in extension cords. No "big switch" for us like on T.V. The weekend after Thanksgiving is for getting the indoor decorating done, and the tree up. I've been surprised to find Amos is the most excited of the kids. He turns the tree lights on the moment he arrives home from school and spends many hours admiring the tree and talking about Christmas in general. 

Over the last few years I have developed a love of Christmas sweaters, which evolved into a goal: eventually have enough sweaters for every day of December. Ambitious, I know. Frivolous, and totally unnecessary, absolutely. Christmassy all the way! 

One thing I did not take into consideration is my age. I am 52. The middle aged women reading this post know where I'g going with this. They are likely already sweating! 

I thought I was done with this whole change thing. I mean, who goes through it THREE times, much less four??? The first time was chemo induced in 2014. The second time was 2015 with the hormone blocker Tamoxifen, which I was supposed to take for the next eight years but I only lasted about three months before the side effects had me begging my doctor to stop. Then in 2016, as part of my post-cancer treatment I had my ovaries removed, throwing me into menopause like a brick wall! UGH! Then it all went away, and I went on with my Merry life. Or so I thought!!! I have found I am having my own personal summers many times a day now. AGAIN! I call not fair! And also, this is odd since I should have very little, if any estrogen left in my body. (if you haven't seen recent pictures, on the request of my doctors I also lost 85 lbs, because fat both stores and produces a small amount of estrogen) But, mostly, I'm just annoyed that I can't wear what I want. I can put a sweater on and be fine, then 30 seconds later be running back to my closet while stripping as fast as possible! I have finally given up.

I'm hanging onto my sweaters though. Maybe next year I'll be able to wear them! 

Sunday, December 08, 2019

Apartment Trials!

When Angela was 11 years old she told me one day, "Mom! I have bad news. I'm moving far away and you're not coming." After all, that is what her big brothers did, and she always looked up to them as little sisters do. Unfortunately for Angela, her health was never very stable, and this was not going to be a realistic expectation for her. Then, a few years ago when she was so sick, and we were told she would not likely survive, we stopped looking into the future more than a few weeks at a time. Thanks to a life-saving, life-altering surgery, Angela's life changed. Our goals for her changed, including being able to live at least semi-independently.

This past week she did a one-week apartment trial assessment with a local agency called Kota Connections. The purpose was to see what areas of independent living skills she has mastered, where she needs a little more work, and where we know she will need supports.

I'm happy to report our impression of Angela's living skills are pretty accurate! In the trial we confirmed she needs help with cooking, and we knew and due to medical problems she can't be alone when she eats due to her unstable swallow. We discovered when faced with new-to-her machines she just needs a few prompts for laundry but will soon be independent with this. Cleaning is an area she needs help. The rest of her day: taking medication, getting out the door on time, etc she does completely independently thanks to her Goally device. (When staff arrived to check on her in the morning she was up, and ready to go, waiting at the door for her ride.) Even when there was a change in schedule and she needed to be ready to leave earlier, I was remotely able to make adjustments to her Goally.

Our next step is to 1) wait for her new county case manager to be assigned because she's currently without one 2) contact the agencies that do supported living (I think her previous case manager did this and 3) find a roommate!

If you are considering the possibility of your adult with a disability moving out, but are unsure if they would be able to manage it, I HIGHLY recommend doing an apartment trial! It allows you to learn where your loved one's independent living skills are before you are stuck in a one year lease. I know a few people who have done similar trials and learned their loved one was READY, and others who had a list of skills their loved one needed to gain or improve before moving forward.