Friday, December 31, 2010

pricey, but cool...

I bought each of the four older kids a "Nook" for Christmas. (R got a different little expensive bit of technology.) I bought them back in October or November and spent the next month or so going back and forth between thinking it was a great idea... and thinking it was a stupid idea.

I think the older girls liked their gift, and I hope they are having fun downloading books onto their Nooks. And I can definitely say it was a good gift for M.

M has some vision problems... nothing that affects his day to day life very much... but he does have double vision at times, and has a very difficult time reading books with regular sized fonts. He does much better with large-print books, but there are a limited number of them at our library... and most of them aren't books he'd necessarily be interested in reading or be able to understand. (Most of them are adult books...) Even with a large print book, having so many words on a page is hard for him and he tends to get lost in the words... so for a long time he's listened to books on CD. But again, there are limited number of titles available at our library, and books on CD are usually much more expensive to buy than a book (at least the ones he wants to read are...) so he only owns a few of them.

The Nook has made all the difference in the world to M. He says it is his favorite Christmas gift, and is already four chapters into a book he'd wanted to read, but wasn't available on CD, or in large print.

Here's what makes the Nook such a cool piece of assistive technology for us...

-The screen is easy on M's eyes, and he can adjust the font size. He's got the font adjusted large enough that he can see it easily, and there aren't too many words on each "page"... making it possible for him to easily read it.

-It saves his page for him. He used to get VERY frustrated trying to find his page in a book. He often couldn't find a bookmark, or the bookmark would fall out when he picked the book up. If your memory isn't dependable (so you can't remember your page number) and reading is difficult (so you can't quickly scan each page to see if you've already read it) finding your page in a book can be a real chore. Having the page saved automatically probably seems like a little thing... but it's a big thing to M, and helps make his experience of reading an enjoyable one.

-It's quick and easy to download a book to read. (And cheaper than buying the book!) Because M can get so overloaded in stores, especially stores that are "busy" visually (like bookstores), it can be hard for him to shop. There are too many choices, too much going on, and too many things that are too expensive, not appropriate for his age, etc. Now I can easily get him a book he'd like to read without ever leaving the house or having to take him into a large, over-stimulating bookstore. (And I can do it immediately, which is wonderful... no waiting for the book to ship!)

I love to read and have felt sad for M, knowing that for him, reading was not the uncomplicated, enjoyable, experience that it is for the rest of the family. I think the Nook is going to make a huge difference in terms of him enjoying reading, and being able to read just about any book he wants!  (Not just what I can find on CD, or in large print!!)

I'm so excited for him...

Thursday, December 30, 2010

Our week

I tried to think of a catchy title for this post... something that sums up, preferably in an interesting or witty way, the past seven days.

But it was a week that doesn't lend itself to quick descriptions, and my brain isn't feeling especially witty right now.

As we counted down the last few days to Christmas, enjoying the special foods of the season... M's GI system decided it needed to remind us that it doesn't work properly is quite picky about what it will digest. M ended up very sick on the 23rd, and was up all that night with his stomach...  We had to be at the airport at 7:15 the next morning to pick up B (dd#2), so sick or not, he was in the car with us by 6:15 a.m. for the drive to DIA. Thankfully having his stomach so thoroughly emptied (sorry if that's TMI) helped him to feel better and he managed the drive there, and walking around the airport, with no problem. (My purse was loaded with a few plastic bags though... just in case!)

The whole family got together at E's (dd#1) house later that morning for a Christmas Eve brunch and it was such a lovely morning. It was Joe and I, E and her husband J, their three children, and B, K, M and R. We had a wonderful time... I especially loved watching the grandkids open their gifts.

Christmas day we stayed home, and B and K (dd#3) spent the day with us. It was a wonderful, quiet sort of day and thankfully M's stomach was doing better by then.  We celebrated Christmas one more time on the 26th, when we went to Joe's folk's house for the big family Christmas get-together. There were about 40 of us there, and it was noisy and chaotic, but fun... and such a blessing to all get together to celebrate the day.

Almost as soon as the piles of discarded wrapping paper were picked up from the living room floor, it was time to quickly get moving on the homeschool group dance I was helping to plan for the 29th. What had started as a fun project and one I was really looking forward to, had turned into a major stressor shortly before Christmas, when one of the mothers of the homeschool group didn't like the way we were planning the dance, and decided to lash out at me personally. When that happened I just put the dance on the back burner... the fun was gone from the job and I figured I could just ignore it until after Christmas, and if I worked hard I'd still have time to pull it together and get everything done by Wednesday evening.

That seemed like a good idea on the 15th or so of December... but on the 27th, with only two days before the dance and lots to do in those two days, I was seriously wondering why I hadn't gotten everything done earlier!

On Monday, the kids and I looked at the room we'd reserved for the dance, with the mom who was going to take pictures of the evening, and figured out decorations and things. Tuesday was our day to shop for the craft supplies. I knew just where I could buy what we needed, and knew the price was do-able. Easy right? But then that store no longer carried what I needed, and the next store I went to carried them, but it would have been more than $100. to buy enough for all the kids coming to the dance.

Mild panic was starting to set in as I drove from Denver (where I was shopping) back to town. M wasn't doing well (he was tired and had started hallucinating as I drove), so I was debating taking him back home for rest, or continuing to shop.  I had stopped at a light on a busy road leading into town, and was talking to M when a huge jolt from behind pushed my car into the intersection. The older man driving the car behind me hadn't noticed the light turning red, or my car stopping (yes, I'm incredulous at these things... how can one not notice those kinds of things?) and crashed into the back of us.

Rather than go on and on about the details of what happened next, I will just say that it was pretty dramatic... but no one was badly hurt. R got the worst of it, moving forward with so much force after the impact, that she hit the headrest in front of her with her face. (She was buckled in, but the point of impact was pretty much directly behind where she was sitting.) Thankfully nothing was broken... she has a shiner, and we are all a bit achy and sore, but no major damage was done.... physically.

Unfortunately, R's anxiety quickly skyrocketed to new heights after the accident (probably due in part to losing a friend of hers to a car accident in October) and we are still dealing with that aspect of things.

Despite the drama of the accident (and the drama of the kids reaction to the accident) I still had the dance to think about. I considered just letting everything that wasn't already done go... but changed my mind, called around and found the craft supplies I'd been looking for, and ran to town Tuesday evening (after Joe got home with a car that was drivable) and bought everything.

Wednesday (yesterday) the day passed in a blur of phone conversations with people at insurance companies, and making sure the kids were ok physically after the accident. A visit with the pediatrician helped reassure R that she would be ok, and Dr M also had some good ideas to help with the back spasms R was having. A talk with the people at the orthopedic clinic where M is seen for his hip problems gave me some idea of what to look for in terms of the increased pain M was having in his hip since the accident. The pediatrician also had M's hip x-rayed and the films sent to the clinic so they could check things out. (It looks good, nothing is out of place!)

By the time all the medical/insurance stuff was done we barely had time to grab the things we needed for the dance and run out the door to get there in time to set things up.

The dance was wonderful (if I do say so myself) and I loved seeing the teens from the group having so much fun. They danced, snacked, talked, but mostly danced... it was awesome.

That brings me back to another Thursday... SO much has happened during the past seven days I'm having a hard time remembering it's only been one week since M got so sick, and this wild week started.

It's supposed to snow today here.. and get bitter cold... and windy.

I'm thrilled.

I will spend today happily staying inside and warm, drinking tea, catching up on the mountain of laundry that has taken over my laundry area, and being thankful for the week we just had. It was the kind of week that just makes a person thankful on a number of different levels...

Hopefully tomorrow I'll have some snowstorm pictures to post... oh and maybe some sledding pictures!

I do hope it snows enough for sledding...

Thursday, December 23, 2010

sugar cookies, icing, and red hots, oh my!

The kids and I finished up the Christmas baking Tuesday night with a few batches of sugar cookies. We had originally planned to get together with our next door neighbors, and decorate our cookies and have lunch together.

But M's stomach is giving him more trouble again, and he was up and down several times Tuesday night with stomach aches... so I knew it would be very difficult to do anything food related with the neighbors. I think most people have a hard time understanding how much M's stomach problems impact what he can eat and drink. I basically keep a running tally in my head of what he's eaten each day, and when it seems like he's putting too much in, too fast... or putting too much of the wrong kinds of things in... I have to slow him down.  Even eating something that is healthy (cheese, or whole milk, for example) when he's already had rich (to him) food, is a problem. Sometimes just drinking a glass of water, when he already has too much liquid in him, is bad news. To a lesser extent I also keep track of several days worth of eating as well, planning ahead when I need to. So... if I know we are going out to eat on Wednesday, I make sure he doesn't overload his stomach on Monday or Tuesday. It probably seems like a strange way to live, but it's better than him being sick constantly the way he was last spring and summer.

So, because of the stomach problems M had the night before, I knew we couldn't manage decorating cookies and having lunch with the neighbor. M's stomach was already acting overloaded, and he's unstable enough that he'd never let me limit him intake if the neighbor was telling him it's ok to have another helping, so it was a situation that could easily have gotten a bit ugly.

Luckily... both kids were ok with not going... so we decided to just stay home and decorate our cookies in the afternoon, after school.

Then K (dd#3) called during school time and was in the area with her friend KT, and was going to stop by. What perfect timing! We waited for them so we could all decorate cookies together...

We had so much fun! M was pretty wired, but made it through... and it was great to spent some time with K and KT. KT's family lived on our block when our older kids were young, and although the girls are only 23, they've already been friends for 20 years. They met a little neighborhood preschool group, and went to each other's third birthday parties!

We worked for a long time decorating cookies, and I think the finished creations are beautiful (and they taste really good too!).

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It ended up being a wonderful afternoon... the kids had a great time decorating their cookies with the older girls, and I loved seeing them all having such a good time together!


(from left, R, K, KT, and M)

Tuesday, December 21, 2010

Midnight star gazing

I got up around midnight last night to see the lunar eclipse...  I didn't get the kids up, R had no interest in it and I knew I couldn't wake M up in the middle of the night and not pay the price the next day (and the next day, and the next....). Disrupting his sleep isn't pretty, especially during Christmas week, when he's already unsettled.

The eclipse was amazing... and was thoughtful enough to take place where I could see it through the skylights in the classroom. I didn't even have to bundle up and go outside!

I didn't take any pictures of it...

...but did take this one of the moon this morning, dropping down behind the barn.

Still no snow here (except for a dusting a few days ago... not even enough to count!), it feels like this is going to be the winter-of-no-snow. There is LOTS of snow in the mountains west of us... but we're dry here.

Both R and I are yearning for snow...  We want it to look like this outside:


(this photo was taken in March of 2010)

Monday, December 20, 2010

*~*daybook*~*

simple-woman-daybook-small
FOR TODAY

December 20, 2010

Outside my window... it's very dark now ("darkest before the dawn" you know) but last night there was a brilliant full moon. I love the way the big evergreens cast their giant moon-shadows across the pasture.

I am thankful for... the season... the wonder of it, and the children's excitement and anticipation.

From the learning rooms... R's still deep into learning everything she can about ancient Egypt, and I've also been thrilled to see the progress she seems to be making in math. M is unstable enough that just getting his cooperation for school is a challenge. We're still plugging along though... it's just not a lot of fun, most days, trying to teach him.

From the kitchen... yesterday was baking day 1. I made some easy cookies and candies and took baskets of treats to the neighbors. Today will probably be baking day 2... making sugar cookies with the kids so they can decorate them, and Wednesday will be baking day 3... when we go to the neighbor's house to decorate cookies with a few of the other neighborhood kids.

I am creating... I just finished a very fun project. It's a Christmas gift for a friend, so I can't say too much, but it involved painting on slate. I wasn't sure if my idea would work, but I'm happy with how it turned out...

I am going... down to the bank today to try to straighten out some problems with M's account. Usually, I love this bank (we have several accounts there) but they just keep making mistake after mistake with M's account. Hopefully things will get sorted out today, and they'll stop randomly withdrawing funds from his tiny little account.

I am reading... I'm kind of embarrassed to say. I'd like to say I'm reading War and Peace, or an in-depth account of some current global situation... but I'm not. I've discovered Stanley Coren's books and am reading about dogs. I recently finished his book Born to Bark (I had to check it out... I thought he might be writing about Quin!), and loved his writing style. Now I'm reading his book, How Dogs Think.

 I am hoping... we have a good week, and M doesn't destabilize any more

I am hearing... a quiet house... the hum of the fridge, Cody moving around getting comfortable, and that's about it.

Around the house... I'm cleaning things out... again. I went through the kitchen this time and filled a box with things we don't need/use. I'll drop them off at the Goodwill today.

One of my favorite things... the glow cast by Christmas tree lights sparkling in an otherwise dark room.

A few plans for the rest of the week... bake cookies, eat cookies, deliver cookies to friends, bake more cookies, eat more cookies, get seriously tired of cookies, find something salty to eat, eat just one more cookie... you get the idea.

A picture I'm sharing...

my favorite nativity set, sitting on a trunk I'm storing for my brother (this trunk was one my great-grandparents used, over a hundred years ago, traveling from Ireland to the States).


Visit Peggy's blog for more about The Simple Woman's Daybook

Friday, December 17, 2010

the kids slept in this morning...

... and the computer was telling me it was only 17 degrees outside.

So I postponed going out to feed the animals as long as possible, and stayed inside playing with the camera.

I was also feeling lazy, so I didn't put a lot of energy into my experimenting...



... I just took pictures of Joe's little "fishing" Christmas tree that was sitting a couple feet away on the dining room windowsill.




After taking about 50 photos, trying camera different settings, I actually got a few that I like.

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After completely losing track of time, and rushing out to the barn to feed the animals because it was getting "late" (which is a relative term for us... the sun still wasn't entirely up yet!), I hurried back to the house and even had time for a few more pictures, a cup of hot chocolate, and an eggnog taffy before either of the kids rolled out of bed and came stampeding down the stairs.


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It's probably good they got up when they did... otherwise, I might have sat around eating taffy and playing with the camera all morning...


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Monday, December 13, 2010

Home...

Home is good... and lately we hadn't been seeing as much of it as we would have liked.

So we made it a point to stay home as much as possible over the past few days.

R and I put a battery in the little tractor and harrowed the small pasture so it looks nice again.

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Brighty is such a friendly little guy.  


We put up the Christmas tree and got the house decorated...`
  
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... and started a new read-aloud, one we read every year.

We did leave the house to go to the annual Christmas Parade in town. It was wonderful... cold, but lots of fun. We had big mugs of peppermint hot chocolate to keep us warm, and R and I especially loved seeing the beautiful draft horses pulling the carriages.  


Things will slow down this week. We have a couple of friends we want to visit, and plans to see The Voyage of the Dawn Treader... but other than that, we're going to spend our time remembering how nice it is to slow down and stay home.
  

Thursday, December 9, 2010

This is the face....

... of an educated dog.

Cody passed the CGC (Canine Good Citizen) test today.

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He's a little worn out right now... being brilliant can take a lot out of you.

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Yesterday was the day...

... that R's been waiting for.

Ancient Egypt has replaced WWII as the focus of her attention (obsession?), thank goodness, and she's been waiting since September for the homeschool group trip to see the King Tut exhibit at the Denver Art Museum.

She had been counting down the days for awhile, and was so excited the night before that she could hardly sleep...

But finally, it was December 8th and we headed into downtown Denver to see the exhibit.
She and her friend S, waiting to go into the museum.



There were no photos (or even sketches) allowed of any of the artifacts, of course. So the next pictures I have are of R and M after the tour (and the gift shop)... Isn't the huge wagon outside the window cool? It sits on the second floor roof of the north building in the museum complex.


And finally... our booty. I let the kids go a little wild in the gift shop. R had been waiting so long for this, and I wanted her to have some nice mementos
 of the day.


She especially loves the lotus necklace.

Tuesday, December 7, 2010

No one told Cody...

... that he's a little dog.

No one told him that he weighs only a little more than a large cat.

He thinks he's BIG...

... and that it's his job to keep track of things around here.



Like all those pesky deer trepassing in the his pasture early this morning.

They weren't frightened by his barking from inside the house...

... maybe he can run them off with the intensity of his gaze.

It hasn't worked yet... but you never know... it could happen. Once they notice him up there in the second floor window, they might be able to tell... just by his stare... that there's at least 100 lbs of fearless protectiveness packed into that little 19 lb package.

Friday, December 3, 2010

Winter Wonderlights

One of our holiday family traditions is an evening spent at Winter Wonderlights at the Wildlife Experience.  It's one of the those beautiful walk-through-the-Christmas-lights kinds of displays... It's not as big as some we've been to (like the Denver Zoo) but it's in our town, and we do it every year, and it's an important part of our Christmas celebration.

Most years it's been just bitter cold during Wildlights and by the time we've wandered through the lights and get back inside (where they show the original "How the Grinch Stole Christmas" on the big IMAX screen!) we are frozen and can no longer feel our fingers or toes.

But this year the weather was perfect... not too cold, but cold enough to feel like winter (and cold enough to really enjoy the hot chocolate we bought!), with clear skies.

A little snow would have been nice, I suppose... but I'd rather have it dry and be able to feel my toes, than try to enjoy a picturesque snow with numb feet and fingers.

You can see the lights of the display from the road into town...

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Winter wonderlights...



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We bought some of those prism glasses when we got our tickets... They make each point of light you look at, look like a particular picture. R's glasses were snowmen glasses, and when she wore them each bunch of lights looked like dozens of tiny snowmen.



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It was really cool to watch the car headlights on the road with them on... It looked like a whole army of little snowmen racing up the street! :)  (No, it doesn't take much to amuse us...)



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There are many life-size bronze statues around the Wildlife Experience building... This is my favorite.



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We got to see a few real animals too... like this caribou. There was still some velvet left on his antlers and M got to reach through the fencing and touch it. The caribou jerked away as soon as M touched him, but M was satisfied... He said he'd always wondered what the velvet on antlers felt like.




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More lights....



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... then inside for the movie.

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While we were in the museum we checked out the current art exhibit of student artists, and found a painting done by someone we know!   It's beautiful Grace...

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After going through the lights one last time it was time to go.

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We sang Christmas carols the whole way home... It turned out to be one of those evenings I'd like to bottle up the memory of to keep forever.

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Thursday, December 2, 2010

Sunrise...

...the promise, and blessing, of a new day.

I never get tired of watching the sun come up...

So... after posting my list of 20 things I wondered if maybe I shouldn't have...

Maybe it was too personal.

Maybe it would make people feel uncomfortable.

I thought about deleting it.

But then I decided no, I would leave it.

I didn't post it to make people feel bad, or guilty... but because, as Stephanie touched on in her comment, many times people just don't know what to do when a family is struggling with the mental illness of a child. People who really want to be supportive, and would know exactly the right thing to do if there was a death in the family, or the child of a friend was struggling with a serious injury or illness... don't seem to know how to be supportive when that serious illness is a mental illness.

So they do nothing.

They don't know what to say...

...so they say nothing.

They really want to be supportive... but they don't know how.

While my list is very specific to our situation, hopefully it gives at least a few good ideas for that unknown"how".

So the post is going to stay...

And hopefully people will understand the spirit in which it was written.

Monday, November 29, 2010

How to support parents of children with mental illness

I recently took part in an online survey for parents of children with mental illness. The survey was looking at the types of supports (personal, professional and community) that are typically available to parents of children with what they categorize as severe and persistent mental illness.

One of the questions really got me thinking...

They asked, "Please describe ways that your family members, friends, doctors, people you work with, and/or members of religious organizations could be more helpful and supportive of you as a parent of a child with a severe and persistent mental illness.".

I only had to think for the briefest moment before starting to type... In all the years of M's schizophrenia (9 years now!) it's the first time I've ever been asked that type of question, and once I got started answering it, it was hard to stop.

What I ended up with is a list of 20 ways to be supportive of parents of children with mental illness...

Here they are... (in absolutely random order)

1) Please stop wearing t shirts that make fun of mental illness or hallucinations, and think about the language you use... using "psycho" or "schiz" casually, or as even a light-hearted insult, is hurtful to me, and disrespectful of my son's struggle with the devastation of schizophrenia.

 2) Call just to say hello sometimes. No, it may not be the best time for a phone call on my end, but I'll let you know if I can't talk (or I'll let the machine take a message for me). Calling at a bad time is better than not calling at all.

 3) When you call, don't be afraid to ask how things are going.  And if you do ask, please take the time to listen to my answer.

4) If you are able, visit us sometimes... even just short drop in visits are so nice, they can brighten our whole day. It's virtually impossible to take an actively psychotic young person out to visit in other people's homes... so it can be easy to feel isolated.

5) But if you visit, know that as much as we love to see you, shorter visits are usually better than longer ones. People with sz tend to fatigue easily, and can be hypersensitive to noise, stimulation, and breaks in routine. Unfortunately, it often doesn't take long for them to overload... which leads to greater instability and can sometimes even trigger psychotic episodes... so short visits are probably best.

 6) Please be accepting and patient with my child, even when he says or does something inappropriate, irritating, or strange... or when he looks unkempt and disheveled... understand it can be part of his illness and we are doing the best we can.

7) When I tell you about difficult symptoms or behaviors we're dealing with, please don't tell me about the time your child did almost the same thing. Your typical child doing something similar, once, isn't the same as living year after year, 24/7, with extreme behaviors. I appreciate you trying to relate, really I do... but it's just not the same thing.

 8)  Be brave and ask how my child is doing, even if you're afraid to hear the answer (see #3b)... but don't take it personally if it's difficult for me to talk about the worst times until after they've passed and we've made it out on the other side.

 9) Tell me you are there for us, but only if you can match those words with actions.

 10) Please don't talk about my child's illness or symptoms to your friends, co-workers, neighbors, children, extended family, mailman, or anyone else, without asking my permission. I need to trust you to respect my child's confidentiality if I'm going to be able to confide in you.

11) Don't feel sorry for me... ever. I love my child and think he's awesome. His illness may have taken (stolen) many things from him, but it has also allowed me to clearly see the strength and gentleness of his spirit. He is a gift, and I don't want or need your pity.

12) Please don't be pushy about diets, supplements, or other therapies that you've heard will "cure" my child's mental illness. Understand and respect that we've tried everything we thought would have even the slightest chance of helping him... your pushiness brings misplaced guilt and that's not something I need or have time for.

 13) Likewise, don't tell me he just needs a different parenting strategy, or more attention (or less attention). He has a biologically based mental illness... my parenting didn't cause it, and can't cure it (see 12b).

14) Please don't judge the different way I must parent my child with mental illness. By necessity, I've had to learn to parent my son differently than I parented my typical children, and differently than most people parent. Trust that there are reasons for what I do, reasons that are probably not apparent to those outside our family... but are valid nonetheless.

15) Be patient with us when we seem undependable.  My son can go from calm to out of control very quickly, and (trust me on this...) you don't want us around when he's out of control. I can't keep appointments when he's unpredictable, it's too big a risk. So when I make plans with you, know that I'll do my best to keep them... but sometimes it's just not possible.

16) Understand that hearing about your typical child's successes (or complaints about your typical child's minor misbehaviors) can be hard for me, especially when my child is unstable and seems to be hanging on by a thread. Know that I'm happy for you and your child, and truly appreciate (probably even more than most people) the miracle of a typical child's accomplishments... but know also that those kinds of conversations can be hard and trigger grief.

17) But at the same time, please don't be afraid to talk to me like a "regular" person... Having normal conversations, about normal things, helps me to feel normal even when things around me are anything but... and they help me feel connected to the rest of the world.

18) Don't hesitate to share your struggles with me or lean on me for support because you feel like the struggles you are facing aren't as "big" as mine. I know of no rating system for life's challenges... You're part of my support system, please let me be part of yours.

19) Hugs are good.

20) And prayers are always appreciated.

I do love Colorado...

...especially the weather.

The temperature yesterday was in the 70's,

but today looked like this...

The kids (and I) were so excited about the first snow. We pulled out the hot chocolate and candy canes and made peppermint hot chocolate to celebrate.

R on her way to the barn to feed...

Tucker and Cubby feeling sorry for themselves...

It was a good day for staying inside and doing some studying...


...I do take my work very seriously, you know. I believe in perfecting my craft.