Super Storms - Super Scary

I am not a worrier at heart.  I'm really not - but - watching this monster storm, Sandy, hit the east coast creates just a bit of panic in me.  I wonder what in heavens name we would do if it happened to us.

Years ago, before our final 3 kids arrived, we lost power after a terrible thunderstorm for about 4 days.  We lasted about a two days before we packed up and hit a hotel.  Last winter we lost power a couple days and ended up at a hotel pretty quickly due to the cold.  I spent the night with Callie as I thought she'd do better at home and Mark stayed at the hotel with the kids that were left.  It was below 50 when we woke up and ran to our car hightailing it to the hotel.  Thankfully, by the time church was over the power returned and I'm even more thankful we could afford to go to a hotel, although it did blow the budget temporarily.

For us, loss of power means loss of water - we have a well, which is a lot more difficult to live without than just lights and electronics.  No water means no flushing, no showers or water to clean various people at all for any reason - catching my drift? No way to make Shannie's liquid diet, nor keep it safely refrigerated.  It's pretty much a disaster for us, but again, so far we could afford a hotel in a pinch.

So my thoughts and prayers really go out to those I know and love in the east coast, but especially those with disabled family members who have medical equipment that depends on electricity or medical disorders that make it difficult to regulate their body temperatures.  For some people it's not simply an inconvenience that'll make for awesome story telling some day.  It can be life or death and that's why I feel just a little bit panicked at the thought and ever so grateful that we are safely in the middle of this great country.

Ode to Aunt Jo

A week ago my Aunt Joanne passed away.  I've been trying for the past week to put into words what Aunt Jo meant to me and to my family.  

When I was young, people who knew the Smith side of my family would call me little Joanne.  Not, as you might think, because my mother's name was JoAnn, but because I had an energy much like my Aunt Joanne.  She was full of energy and was athletic long before that was a "proper" activity for girls.

Aunt Joanne had many many fine qualities.  She was the hostess with the mostest, as we would say.  When she prepared a meal it was a thing of beauty.  I remember when we were together in New York, to take care of my dad as he was recovering from a bad infection, and I had flown out for a few days.  She made my dad a simple lunch of cheese, crackers and fresh fruit.  The way she arranged the foods on the plate and added a sprig of something or other made the simple meal a work of art.  As I commented on it she seemed surprised.  She made the common something special.  

She made my kids feel special as well.  She found out how much my Melissa loved horses and invited her to spend a couple weeks at her ranch.  Although Melissa was a little homesick, she had an amazing time.   Joanne filled her horse love to overflowing with lessons and non-stop time to ride, groom and just love on horses.

For my two youngest, Ella and Jacob, she was the grandmother they didn't have.  We were able to spend time in Idaho three of the last 4 summers.  When I gave them the choice of going to Y camp or going to Aunt Jo and Uncle Dick's house - there was just no choice for them.  Idaho won hands down. They absolutely loved being there, and I did too.

She made me feel special too.  My mom died when I was 19 and the older I got, the more time I was able to spend with Aunt Jo.  She filled a spot I hadn't realized was empty.  I was able to spend a few days with her this past Nov.  Unfortunately she ended up spending much of the time in the hospital.  She was more concerned that it was ruining our time together than about how she was doing physically. She had planned massages, something we were to do together, but insisted that I still go ahead with mine.  It was so very thoughtful, just what you'd expect.

Two and a half years ago when Melissa was married, Aunt Jo came to Minnesota.  It was a DIY wedding and even though she had only recently recovered from a serious lung illness, she couldn't wait to come. She helped me choose the salads and sent me some of her favorite recipes, which I will especially cherish now.  We spent the afternoon before the wedding preparing the salads and she helped, as she had helped so many family members so many times.

Along with her horses she loved her adopted state of Idaho.  She loved everything about Idaho and the BSU football team.  A year ago when I was out to visit by myself she had her royal blue and orange outfit on the night before a game, including the scarf she had made as she'd taken up knitting again as her energy level was lower.  She was never idle.

She was fiercely loyal to family.  Not just her nuclear family, but her extended family as well.  I knew something wasn't quite right this August when for the first time I didn't receive my usual birthday card.  She had never forgotten my birthday and mailed me a card even when I moved nearly every year for about 5 years.  She was always sure to get my new address and never missed my birthday.

One of our last conversations included a discussion about my cousin who had recently had brain surgery, but had complications and has been really struggling ever since.  It was so frustrating for Joanne that she was not able to go and help.  Doing, helping and supporting others both in a physical sense and in an emotional sense was who she was.

 Last Mother's Day I sent her a card which, unbeknownst to me, was really meaningful to her.  She pulled it out while I was there this summer and told me how much it meant to her.  My note read something to the effect that I learned much about unconditional love from watching how she treated others.  I hadn't even remembered what I had written, but she sure had and I'm especially grateful now that I sent that card.

Thoughtful, loyal, generous, giving, hospitable, caring, she loved greatly and greatly loved others.  I will miss you so much Aunt Jo and whenever I entertain you will be close beside me in spirit because no one could make people feel welcome and comfortable like you could.  Thanks for teaching me that and so much more.

Thoughts on Callie Turning 12

We've had a little over 9 years with Callie girl and they have been so full - very full.  This past year we had some highs and some lows.  We survived the lows and relished the highs.

Callie's level of anxiety became unbearable and was stealing her joy in life and spreading anxiety and concern to those of us who love her.  We finally felt we were at a spot where pharmaceuticals were no longer avoidable as a tool.  It was a timely and appropriate decision.

As she prepared to enter middle school this year we were especially concerned with the increase in noise level and number of bells she would have to endure on a daily basis.  From all that I've heard she has adjusted very well.  On her birthday Fri., I heard that a group of girls came to her table and serenaded her with the Happy Birthday song.  She was thrilled and gave hugs all around.  How cool is that?

She also was able to enjoy roller coasters - really enjoy them.  She is participating in Special Olympics and, for the most part, handling the sensory overload that is involved very well.

So as we finish out her preteen years who knows what is to be.  I've been toying with writing a book, specifically about Callie and her amazing story.  Myrikle in the Making is my "working" title.  I guess since I haven't written one page it's really an "un-working" title.  If you don't know the story Myrikle was the name her birth mom gave her.  As I've said before her name was far more prophetic that I could have imagined.

Watching how God works in Callie's life has and I know will continue to be one of the most exciting adventures of my life.  I learn so much from her and am always amazed by how much influence she wields on so many people.  She's effected so many others by her huge personality.

                                    Here's to an awesome 12th year full of amazing adventures!
                                                          We love you Callie Girl.

Just another Friday night

Tonight we have the privilege of having Dominic for an overnight.  It's a rare honor and we love it.  Tomorrow when he wakes up hours before everyone else does my opinion may change, but now while he is sleeping in the other room - priceless.

We don't know why, but Dominic's happy spot in our house has always been under this piece of furniture.  Usually he would lie on the shelf there, but tonight he fell fast asleep up against the wall underneath.

When Mark and I were having our first meeting with a psychologist for one of the kids and we were discussing our family Mark commented on the fact that for some reason we really hadn't considered the overlap in grand parenting while still actively parenting.

 We may not be able to be as available as some grand parents are, but on the other hand we didn't have to re-childproof our house, we never un-childproofed.  We often hear from other grandparents our age how exhausted they are after their grandkids visit.  We're still pretty used to the exhaustion that is parenting, albeit we do enjoy our down time much more these days, and frankly require much more of it.

Best finish up it's tIme to send the aunts and uncles to bed before the grandson's night is half over.

Always Greener on the Other Side

As long as we've been raising children there have been disparities in the expectations between siblings. Chad joined us when Conor was just 2 and Jonathan was born shortly afterwards.  So, there have always been siblings whose abilities were sharply different than other siblings.  Explaining why this is and why our expectations for the typical will be different takes time and maturity for the kids to understand.

I have often heard complaints about how unfair it was/is that the typicals have to do chores the atypicals didn't.  My approach is generally to try to help them appreciate how blessed they are that they can perform chores or do homework on their own.  Occasionally I'd hear out of exasperation, "I wish I could be like Chad and never have to do anything."  By the way, he did and does do some chores, but his abilities are definitely limited.  That comment would always lead me to ask them to really think about whether they'd like to trade places.  If you were Chad you'd never drive, never date or possibly marry, rarely get to choose what you'd like to eat because you can't cook or learn to, can't take a pain reliever if you have a headache or even tell someone else you need a pain reliever or travel without someone else choosing the time and activity.  "Do you really want to trade places?"

Someone once said to Mark how much they envied Chad as he had such a carefree life.  No worries or troubles.  Mark's reply was essentially what makes you think just because Chad's not worried about business problems like you that his worries are any less important or troublesome.  Maybe his worries are more basic, but if someone forgets to get him lunch at his usual time why would he not be concerned about whether he's ever getting lunch.  What if something frightens him, but he can't tell anyone what that is to be reassured or have it explained.  Mark's feeling was basically, how dare you think just because your concerns involve money or a business that makes them bigger than Chad's basic concerns.  To Chad they are hugely important, doesn't matter if you think so or not.

I never had a kid try to further argue that they'd still rather be him.  Now, I think Chad has a pretty terrific life and he seems quite happy with it.  However, he does have his frustrations and we can't really know if he loves the life we've chosen for him.  He can make some choices, but the pool from which he chooses is decided by us.

I wonder how frustrated Chad would be if he could understand the choices we typicals make and why.  I wonder if it would drive him crazy to think we could have made all kinds of different choices, but didn't choose them because of fear or insecurity.  I'm thinking if I were Chad and became typical overnight I'd have some choice words for me.  "Why didn't you do this, why did you waste time on that?"  "I would have taken advantage of every opportunity if I'd had all that you have."

Isn't that just how it goes.  I always think I know what's best for other people and could do it so much better.  Why wouldn't Chad?  It's what I would do and really that's the point.  Chad is just like me - and you too.

Shhhhhhhh

Yesterday I found myself doing something that still surprises me.  I had to shush Callie.  Since our Callie was completely silent when she arrived and it took about 2 years before we got to the point where she could answer our questions with a yes or no.  She was nearly 5 when she achieved that great milestone.  That was huge progress and immensely helpful in meeting her needs.  FInally she could make choices.  Rather than throw her food across the table she could answer yes or no before we set it in front of her.  The simple ability to answer yes or no opened up many doors.

We had an amazing speech therapist and learned so many skills to use at home by sitting in on her speech sessions.  Amy helped us take Callie from a silent little girl to one who was non stop talking yesterday as the public health nurse was doing her yearly review for personal care attendant support.  Amy also became as outraged as we did when the school speech pathologist wrote, "Callie has no functional speech" in her report.  That speech pathologist had already written Callie off - that was a terrible mistake and her great loss.

So, as I sat there trying to have a conversation with the public health nurse over Callie's exuberant playful conversation I couldn't help but smile.  The nurse commented about how great she was at entertaining herself and I told her the short story of her speech and language development.  It's a story we will be repeating for a very long time and one I'll never tire of telling.

Back to School 2012

We are off and running into the 2012/2013 school year.  This is a pivotal year for pretty much all my kids.  Jacob is in third grade learning cursive, not sure why they still teach that - just sayin'.  Ella began middle school.  She is in a K-8 school, so she didn't have to leave the building, but does have to move from classroom to classroom.  Callie also started middle school in a whole new building with a whole new staff.  Our little sound sensitive child now has to deal with the hated bell many times over what she's had to deal with before.  Christian is finishing up his middle school years this year and Shannon officially began high school.  I say officially because her program was in a high school the past two years, but this year she is actually high school age and is back in our school district, albeit not our neighborhood high school.

One bummer about having kids in "low-incidence" special ed. classrooms is we've never had their program in the school our neighborhood kids attend.  So for kids who have grown up with typical neighborhood friends, they ride a different bus to a different school rather than attending the same school with other neighbors.  In addition to that Callie and Christian didn't get to move into the middle school that their reg. ed. peers went to when they left their elementary school.  This is also true with Shannie.  Building relationships with typical peers isn't easy and is especially difficult at that middle school age when most kids are not the most comfortable in their own skin, so to speak.

Callie's teacher was excited to tell me how well she did on her first day.  She was definitely the one I was most concerned about as far as adjusting to a new building, teacher, schedule etc. etc.  She reiterated what we hear time and time again - "she's so smart".  I'm always glad when I hear that because I know that whoever said it will "get" her.  More often than not now people figure that out quickly, but that wasn't always the case.  There are a few preschool teachers I sure'd like to show her off too - in a totally non-judgemental in your face kinda way.

After a quick light clean up of the house I've enjoyed a wonderful leisurely lunch under our gazebo in our yard in absolutely perfect weather watching my ridiculous dog try to catch a chipmunk who is ruthlessly baiting her.  In about an hour the peace and quiet of right now will completely disappear with the first bus arriving as well as two grandie girls and that too will be thoroughly enjoyable.