Stuffsoup – a little blog with a lot of "stuff"


Two for the show

Posted in Down syndrome,health/fitness by stuffsoup on September 17, 2012
I’ve been running again. I got back into it the only way that seems to work for me… with a group. This time though, it isn’t a running group, per se. This time, it is a group of people running for a cause. I’ve never run for a cause before, but if one had the chance to hook me, it would definitely be this one… It is GiGi’s Playhouse Twin Cities, a Down syndrome awareness center that first opened in Chicago, but now will open its doors in the Twin Cities in January 2013!
Running has been interesting to say the least. I’m slow; slower than my previous “normal”. This means that on those long runs, I have time to think…. LOTS of time to think. I’ve joked to several people that I have to look at my long-distance runs as looooong meditations. See, I didn’t know how slow I’d be. I’ve run a couple of marathons before and thought I’d be able to hang with some of the group. But, time after time, after the group starts out on those early morning runs, I very quickly fall behind.
On one of those long runs that started out at 12, crept up to 18, and turned out to be 18.6 miles, I was struck by some of the similarities of my running with my daughter’s life. My daughter has Down syndrome (which is why the GiGi’s Playhouse coming to town is such a big deal for me) and I’m sure she is aware that her “normal” is slower than others. But, she gets out and does what she can every day. She even encourages her classmates, her brother, and sometimes even passersby by letting them know that they are doing a “good job!” She’ll give them a big thumbs up and a smile for doing things that she might not be able to do while she is busy working on things that she can do so she can improve. She means it too, that encouragement. She is truly impressed and happy for the people she is rooting for. She shows up. She does so as cheerfully as she can on any given day; and most days that’s pretty cheerful. But, even on those days that doing the work is hard, really hard, she is there trying; sometimes slowly, but trying.
I hope to be the same as her in that. I’m showing up, as cheerfully as I can, and I’m trying. I’ll go the “wrong way” around a lake so that I have a chance to encourage the other runners from our group (since I’d never see them if I went the same way around as them). I’ve enjoyed the passersby, particularly around the lakes. I’ve encouraged them and been encouraged by them. I keep showing up, keep putting in the work, and keep being ok where I am while also being very happy for the other runners as they pass me by.
The way I’d like to see it is that my daughter and I, well, we may not be fast, but we have big hearts and we’re tough enough to put in the work even if it takes us longer. We love to support and encourage others along their path and we love to get support and encouragement from those people who cross our paths. So, there’s the pitch… would you help support my daughter and I by donating to GiGi’s Playhouse Twin Cities? Just go to http://tinyurl.com/GiGisTwinCities and click the donate button. Down syndrome is basically 3 copies of the 21st chromosome, so you could donate $21.21 and have 21 friends do the same. 🙂 The marathon is 21 days away and whatever you can do would be appreciated! Though, if you aren’t moved to donate or can’t right now, I totally understand. A smile, a thumbs up, a “good job”, or a kind word will take my daughter and I (and likely anyone that crosses your path) a long way as well. However it all goes, we are showing up!

“Cleans for company”

Posted in Uncategorized by stuffsoup on November 13, 2011

A friend once told me that one of the categories on match.com for “how clean do you keep your house” is “cleans for company”; along with something like “always tidy” and “what’s clean anyway”. I’ve never been able to get that phrase out of my head, I guess, because it was my category. And, when I used to have company more often, my house stayed cleaner. I do like having people over and it is good for me in more than just one way.

When I have no laundry, I feel kind of the same as when I have no new email… nothing is pending and I’m not sure what my next move should be. Maybe I was more of a born firefighter or EMT. It’s kind of weird since there really are so many moves that could be or should be made. I’m just not inspired to pick one… there’s no fire.

I have an idea though. To make it more fun, I think I’ll make slips of paper with some of the bigger projects in the house and put them in a jar or a bucket then pick a “winner” to work on for 15 minutes. If it gets completed, the paper gets tossed. If it doesn’t get done, the paper goes back into the bucket.

How about you? Do you have any projects for your “bucket”?

Restart

Posted in pop psych by stuffsoup on November 9, 2011

I was at book club last night. I didn’t read the book. I adore, appreciate, and admire the women. That is really why I went. But, I want to read the book too.

I used to read the book. Every book. I got into 3 book clubs at one point (admittedly, that got a bit tougher to keep up with). I’ve discovered that as I’ve stopped making time to read, writing has gotten more difficult too.

I want that to stop now. I want to read again. I want to write again. And, so I shall. I guess it doesn’t matter where you start, as long as you do. Now where did I put my copy of Mr. Brown Can Moo?

Hair today, gone tomorrow

Posted in Uncategorized by stuffsoup on March 31, 2011

Well, here are the before and after pictures from the Locks of Love event…

Thank you, thank you to Spalon Montage for sponsoring this and a big shout out to Angie Kruse, the stylist that did my cut. It was so fun to do and the gals were so great!

Locks of Love, here we come

Posted in pop psych by stuffsoup on March 23, 2011

Many years ago, I wanted to give my hair to Locks of Love. I really liked the idea of being able to do something that felt important. What I remember though is that they had a minimum diameter and my hair is thin, really thin. I guess the official term is “fine”. But, whatever you call it, I was never going to be able to grow my hair to a diameter of one inch. (Frightening isn’t it. I can hear my thick-haired friends laughing now.)

Yet suddenly, it seemed, Locks of Love was on my radar again; a gal I know donated hair, a friend’s kid had leukemia, multiple friends were battling cancer themselves, and another gal I know was planning to donate. I ended up checking the regulations again and… no diameter requirement! I’m in. They now also take colored or dyed hair as long as bleach hasn’t been used since bleach apparently causes problems.

I suppose I could have just gone to get my hair cut, but it seemed too good a thing not to share if I could and things started falling into place. I found two other girls who were willing to donate which seemed to me a good start for an “event”. I was at Spalon Montage for a Blog Pantry event and when I told the salon manager that we’d like to find a sponsor salon she said, “Let’s do it!”. Love that!

So, after some iterations, the date and time have been set — next Monday, March 28 at 10:00 am! Spalon Montage said that they would be able to handle up to 7 people pretty easily, so if anyone else has at least 10 inches of hair to cut and would like to get a sassy, new, short cut from a great salon, let me know soon! I’ll see if we can get you in too. It really is a great cause.

I’m glad I will finally be able to do this and I’m glad to have partners in this, Clara and Celia. I am also so grateful to Allison at Spalon! (If anyone can get her some more good press for being so enthusiastically willing to do this, please let me know about that too!)

Love Spalon Montage, I’m sure I’ll love the new ‘do, and I love that a kid might have a chance to feel a bit better!

Happy WDSD

Posted in Down syndrome by stuffsoup on March 21, 2011

Today is World Down Syndrome Day. I had a great time celebrating by taking a book that I wrote about my daughter into her classroom to read it to her classmates and teachers. It is a simple book with lots of pictures that I wrote when she was 4.

The kids were so sweet as they sat to listen. I read about things that she had been through and how some things are different for her and how some things are very much the same. The kids almost unanimously liked all the things my daughter liked in the book. It was fun to share.

At the end, I asked if there were any questions and nearly all of the questions were about how I had put the book together. One boy even wanted to know if I had drawn the pictures (they were all photos). Down syndrome was clearly a secondary thing. I had been told by another mom that this was how it went for her too so I actually wasn’t surprised. I think kids just like the idea of putting a book together to tell a story.

In the book, I explain somewhat what Down syndrome is (at a young kid level). Even so, there was another question. A boy asked at the end, “So, what’s Down syndrome?”. I love that her classmates don’t have this “label” for her and I also love that today, they learned the term. Kids are smart and I think it is good for them to have words for their observations.

I tried to express to the boy that it is kind of hard to explain exactly what Down syndrome is and I asked him how he would explain to someone what “brown hair” is, what it means to be born with brown hair. He kind of chuckled and seemed to realize what a task that would be. I just briefly mentioned that Down syndrome leads to some of the characteristics that I had previously talked about such as that she has to work her muscles really hard (hypotonia), she has to practice things more, and she might look a little different.

My daughter’s teacher then had a great question for the class too. She asked if anyone learned something new or found out something interesting that they’d like to share. And, the class was back to the pictures as a girl said that she thought “It was very interesting to see, um, the picture of her at the beach. It was a very cute picture.”.

I was glad that I had brought in a spare copy of the book with the pages all loose and I passed the pages out and the kids all got a chance to look at the pictures more closely. They were great at sharing and asking for a page to be passed that they hadn’t seen and they made such sweet comments about what they saw. My daughter was even in the mix with her classmates passing pictures of herself and looking at them again.

I am grateful to feel like my daughter is in a good place. She’s just one of the kids in her class. I hope you had a great World Down Syndrome Day too.

Where never is heard, a discouraging word

Posted in parenting by stuffsoup on March 12, 2011

It has to come, I guess. The day a peer says something mean. Why does it always seem to be the girls?? I was surprised though because it wasn’t my kid coming to me to say, “Johnny called me a name.” or whatever. I was privy to the conversation between two girls from my daughter’s Spanish class as they talked while preparing to leave for the day. Girl 1 says to girl 2, “They said you are mean… oh, but I don’t think so. That’s just what they said.”

I have no good words to describe the look on girl 2’s face. It was a combination of shock, sadness, anger, hurt, and a glimmer of just wanting to flee.

I took it as an opportunity to “practice” what I planned to tell my kids when this day came for them. I’ve never bought the “sticks and stones” theory. So I tried something else. I told both of the girls that just because someone says something, that doesn’t make it true and they do NOT have to choose to give it even a second thought.

I asked the girls what they would say if someone told them that the sky was purple. They looked at me confused so I offered that they might think that the person was just wrong and that the whole idea was silly.

I wanted them to see the word “mean” as wrong and just plain silly. Please, please, please girls, don’t give it a second thought because it is as wrong as saying the sky is always purple.

If you know something is just plain wrong, you don’t have to let it in. Water off a duck and all that. I hope girl 2 lets it go and isn’t bothered and I hope my kids will let it go when it is their turn. It is hard though. I think I prefer the “if you haven’t got anything nice to say, don’t say anything at all” plan.

100 books, good reading or road?

Posted in parenting by stuffsoup on March 2, 2011

So, the project for “I like to read” month has come to a conclusion. My kids and I set out to read 100 books in the month of February. It went really well. I didn’t write down every book we read, but I did write down at least 100. I’m actually glad to have a number (I’m a geek, I like numbers) for how much we read. I wouldn’t have guessed quite that much, but it is good to  know that we’re getting in some good stuff.

Having so many fun books (old and new) around got pretty interesting too. The kids decided to make a “road” out of the books for monster trucks to drive on. The “road” got a bit rough on the “mountain” (otherwise known as the stairs) and was quite long, going into each of their bedrooms.

I liked how creative (and careful, since that’s a big rule) they were with the books as “material”. I also liked reading so many different books and spending time reviewing the coins and the math involved in the coin count.

It was a fun project to do and we got to a lot of fun books… from simple ones like “Hello, Puppy” to more lengthy tomes like “Cars and Trucks and Things That Go”.

We’re still working on what we’d like to do with our 100 coins. The brainstorming session involved dolls, puppies, mailboxes, and more.

Did you get some reading done last month? What would you do with 100 coins?

Forward, charge

Posted in pop psych by stuffsoup on February 17, 2011

A year ago or so, I met the keynote speaker at a Parent Fair in the town where I live. She is a life coach and motivational speaker. When I spoke with her after her talk, there was something that she ended up asking me that has never let me be… “What are your chargers?”

“Chargers”, she explained, were things that charge you up… you know, make you happy or content or energized. They could be as simple as a warm cup of coffee (not a charger of mine, though it could be for some) or as complicated as a walk on the beach (now we’re talking! though definitely complicated if you live in Minnesota and it’s February). When she asked, I had no response for her which was a bit disturbing… had I really forgotten what charges me?

Well, last week I was certainly reminded of a few “chargers”. I was invited to the Alexander Ramsey House in St. Paul to offer my opinion as a research panelist. I was paid for my time and even treated to dinner. I hardly know where to start, there were so many chargers… It feels great to be paid well for my time, it feels great to be asked for my opinion, I love brainstorming, I love to meet new people, I love new experiences (I hadn’t been to the Alexander Ramsey House before), I love being a part of something fun.

Apparently, I wasn’t alone in thinking this was great fun. One of the other participants said to me conspiratorially, “Can you believe they are paying us for this?” I smiled and agreed that it was pretty great. There were about 10 of us ranging from a young gal who said her hobby was “partying” to an older, retired gentleman who discussed his favorite hobby, “historical research”. I guess I was considered part of a demographic somewhere between them.

Another charger from that event is along the lines of trying new things, I love trying new food and the food certainly did not disappoint. They catered it in from Forepaugh’s Restaurant which is right across the street. Just listening to Chef Don Gonzalez describe what he had prepared was a culinary treat, but eating it… well, all I can say is really more of an exhale (or a chant)… mmmm.

I look forward to going back as this is a 2-part research. They are taking our suggestions and refining them to see what might work. Then, they plan to get more feedback from us. So, watch for new offerings at the Alexander Ramsey House which is, on its own, a pretty cool historical place, by the way.

And, think about the things that charge you? Have you done any of them recently?

Cold toes, warm heart

Posted in Down syndrome,parenting by stuffsoup on February 10, 2011

My daughter has taken to climbing into bed with me between 5:00 – 5:30 in the morning. There are just a couple of things that make this less than optimal for me. First, I am not a morning person and second, my daughter is not always the easiest person to share a bed with so usually there will be no more sleep for me once she is in the “big bed”.

The other morning, she climbed in and cuddled up like she often does. This time, she pulled my hand up underneath her chin like she was pulling up her blanket, so the palm of my hand rested on the soft, warm skin at the collar of her button-down pajama shirt. Suddenly, she felt small again.

She was small as a baby; born prematurely, as babies with Down syndrome are at greater risk to do. I used to “measure” her with my hand back then and nearly everything on her was smaller than my hand.

That morning in bed, her chest felt as small as my flattened hand. It got me thinking about her heart. That little defect she still has and the one she finally outgrew. [Nearly half of babies with Down syndrome are born with heart defects.] I even thought of the newly famous kid in the Super Bowl commercial who played Darth Vader. He has bigger heart issues than most of the kids I know with Down syndrome.

I felt glad that we were not lying in a hospital bed together, which we have done for other issues. I was glad that we had never had to go through open heart surgery as others had. I was grateful for how soft and warm and cuddly she felt and how sweet the moment was.

Then, she kicked me with her cold, little toes as she rolled over in her sleep. 😉

Next Page »