Comfort & Joy

Tidings of comfort and joy are words in the Christmas carol "God Rest Ye Merry Gentlemen". Also on this travel mug my friend gave me. When it's filled with coffee I hold comfort and joy in my hand. But it also makes me think about other things that bring me those feelings. Walking in the door at the end of the workday brings me comfort; just having a home is one of the most reassuring things in life; a place where I belong no matter what else happens in my day. Just knowing that helps get through some tough days. I can't imagine not knowing where you are going to be at the end of the day. It must be awful.

What about joy? The people in my life bring me joy. My husband and children, my coworkers and friends, my siblings and their families brighten the days. Having a good laugh over some shared silliness is such a wonderful thing to do. Joy also comes from music, a bright sunny day, and overcoming a challenge. Seeing a loved one happy is one of the greatest feelings in life. This time of the year it seems everyone is wishing each other comfort and joy; I wish that for you too.

 

My favorite Yuletide coffee cup.

Things I Miss

I'm feeling nostalgic tonight and somewhat melancholy. Christmas is fast approaching and with all there is still to be done it feels somehow wrong. I'm remembering how we used to get ready for this holiday and without those things, somehow, this year feels kind of empty. Here are some of the things I miss.

*Writing a letter to Santa. Writing that letter as a child was like putting all my wishes in one place and sending them out into the universe with the hope that one day they'd all come true.  Maybe as an adult I should still do that--hey, it couldn't hurt, right?

*Looking through the Sears toy catalog. Was there anything better than that? We used to wait for it to come out and then spend hours looking through it and marking off the things we wanted. I wish there were a catalog like that now! Just to dream about whatever strikes your fancy would be such a pleasant way to spend an afternoon.

*Doing Christmas crafts. Whether it was making tree decorations out of yarn and cardboard or making tinfoil chains I loved Christmas crafts. Busy hands making what became treasured items when they survived time's ravages in retrospect was an awesome way to fill the time waiting for the big day.

*Walking uptown to do Christmas shopping. It was wonderful growing up in a small town where I could walk uptown with a friend after school to shop. The Internet and the big box stores and the mall just aren't the same. It was so much fun walking in the crisp December air and looking at everything in the shops on Spring Stree while humming along to the Christmas carols being broadcast over the stores' sound system. Such dazzling displays of items and decorations! It wa a great way to get into the holiday spirit!

These are some of the ornaments I made

When I was younger. The top two when I was perhaps 12, and the bottom one as a newlywed. I treasure them and put them on our tree every year.

Spots & Stains

Yesterday as I was cleaning and cooking in preparation for Thanksgiving I noticed how used and worn my house and appliances are; especially in the kitchen.  We've lived here nearly thirty years and of course replaced things from time to time but not for quite a few years. (Thank goodness because things are so expensive!) the linoleum is looking a little tired with a scratch or a crack in a couple spots and some staining which I think just can't be helped because of its age and amount of use. The kitchen really is the most used room in the house, the place where everyone goes for warmth, comfort, sustenance and me. Many conversations happen in the kitchen, usually in front of the stove.  My stovetop, I'm afraid, is showing its age. There are stains around the burners that just won't come off no matter how hard I scrub. I was thinking as I was cooking and cleaning that all the wear and tear are silent witness to the life we have here. There's the scratch in the floor just under the front of the fridge that happened when a jar of pickles fell and broke leaving a chunk of glass which left its damage when we moved the icebox to clean the pickley mess. The high traffick areas just never seem to look as clean as the rest of the floor even though I mop them regularly, testament to the number of times feet make contact there. The stovetop especially tells the story of family and friends being fed and cared for. Whether it's a box of macaroni and cheese, a cup of tea or a Thanksgiving feast that left a small spatter or stain there's a certain comfort I take in knowing I've loved and helped sustain the important people in my life in such a basic, beautiful way. So this Thanksgiving I give thanks for the spots and stains that are a testament to our family's love for one another.  Happy Thanksgiving!

Remember November

The ghosts and goblins have come and gone

A new month starts with the dawn

This is the month we most give thanks

For veterans, voting, and (fill in the blanks),

Please don't rush through this month November,

Take your time so you can remember,

Everyone you are most thankful for,

Feeling thankful for them is not a chore.

by S. Donald

Welcome to November, the most rushed through without acknowledging it month. It seems we go directly from Halloween to Christmas in a rushed haze barely sparing a thought for any of this month's events. Election Day, Veterans Day, and Thanksgiving are all pretty important days but seem to be an afterthought.  How hard our ancestors fought for the right to vote, and some people in other areas of the world still don't have that right. Yet how many of us simply blow it off because either it's not an "important" election such as for president or because we don't like any of the candidates. Well I'd say every election is important because it gives each of us a chance to send a message. Even if the candidate we chose doesn't win, someone notices that x number of people don't agree with the person who won. Doesn't that help (at least in theory) send a message that there is important work to do in bringing all points of view into play? That may be too simplistic for some people's taste but hey, I'm just expressing my opinion which I have every right to do largely because of the people we honor on Veterans Day. Those brave men and women who gave service to our country so that we might all be able to sit around reading blogs where others share their thoughts on any subject they like from the comfort of our cozy homes. That's a pretty important day! Then there is Thanksgiving which has been diluted to be an excuse to over eat, over drink, watch football and plan Christmas shopping strategy. I hope we all pause in our indulging to be thankful for all that we have, material things and food but also our friends and family. The people who help make our lives as rich and full as they are. This is another important day!  So we have 30 days to try and keep a slower pace and bear in mind all we have to be thankful for. Let's not let the month go by in a blur, but live it one day at a time savoring the feeling each event brings.

Reading

I love to read, always have and always will. I love a good story! As a child I spent many hot summer days either in the coolness of the library reading & picking out books or laying on a towel in the yard reading. I especially enjoyed all of Louisa  May Alcott's books and Laura Ingalls Wilder's reading them over and over so many times I lost count. I loved books about horses reading "Black Beauty" and "Misty of Chincoteague" multiple times. These days I'm more likely to read either a murder/mystery or a novel although I take occasional forays into life after death. Those collections of inspirational stories such as "Chicken Soup for the Soul" can also be found on my book shelves. I've just always loved books; and words. I love alliteration and rhymes yet rarely do I read poetry. I prefer to write my own although scraps of Robert Frost's "Stopping by Woods on a Snowy Evening" occasionally run through my mind, and I can still recite "Trees" by Joyce Kilmer.  Books; stories; have a way of taking me out of my routine life and giving my worries a rest. Reading at the park is an especially good routine buster for me. Of course on a cold winter weekend afternoon there's not much that beart curling up with a blanket and a good book.  There are those who prefer non fiction or a biography, and while those can be interesting I prefer to leave reality behind and go along with an author's imagination. Whatever you like to read, give yourself a little vacation and open up a book. You're bound to feel refreshed and have a slightly new perspective on things.

Little Things

Sometimes the things going on in my life, both good and bad, come at me so rapidly that I begin to feel overwhelmed and pointless. So many things going on and no time to process it all or deal with anything effectively. This past week has been filled with good things and some not so good. No major bad things, really just annoying difficulties that arise time to time in everyone's life but when I'm feeling ineffective and emotionally drained those minor things feel huge and insurmountable. When that happens it seems like I am always the recipient of some type of nice little surprise from a friend on the day I need it the most. It could be anything from a phone call to a box of cookies in the mail. Yesterday I was feeling like I was the most pointless, ineffective person ever to walk this earth. As I approached my front door upon returning home from work, planning in my head a little pity party over lunch, I saw something on the chair on the porch. It was a stack of small books tied with a ribbon and a note attached. It was from a friend who shares a love of those little books with me. My day suddenly was wonderful! The books vary from bible verses to bless the home, pictures of Washington, DC, to Chinese Proverbs. My favorite among the books is a beautiful one about friendship, which was in the middle of the stack.  It was such a nice surprise to find that gift by the front door. The seemingly smallest acts of kindness we do for our friends can make the biggest difference in how we feel and see ourselves. Sometimes even the most optimistic among us needs that little boost that says "you are important, you are wonderful, you are appreciated just because you are you". If you are thinking of doing something for someone just because you want to then I urge you to do it--write a note, bake some cookies, drop off a candy bar or pick up the phone and call. It may seem a small thing to you, but it could be just what someone needs to regroup and get on with this business of living.

Was Someone Staring?

Another article that wasn't accepted, I share it here.

When my daughter, who has multiple disabilities due to Aicardi Syndrome, was 18 months old and we got her first wheelchair I remember feeling extremely conspicuous.  As far as I was concerned you might just as well paint me bright orange and make me walk down the middle of the street because I felt so very uncomfortable.  I didn’t want us to be noticed; to be stared at.  The physical therapist we were working with was very excited and happy about the chair, I was not.  As time went by we did get stares and those odd looks from passersby, both adult and children.  As my daughter got older and larger, so did her chairs and with each one a little part of me cried because all I wanted was to blend in with the crowd and that was getting harder and harder to do. People were looking. They were looking at us, at her, at me, at her chair.  We were unusual.  Another thing that happened as she got older was that my daughter began making noises.  Not yelling or screaming, more like grunts, groans, moans and the occasional “aaaahhh!”  Then there were noises associated with the seizures.  Always at the worst times, like during silent prayers at church, or when a child had a solo at a school concert.  Now people were really looking!  We didn’t let it stop us.  After all, (I tell myself still), this journey, this life we live, is not about me.  It is about my daughter and her journey through life.  I’m just here to help her along the way.

She is now 22 years old and on our last vacation I had a realization.  If people are staring, I don’t care. I. Don’t. Care.  Really. Another thing: I didn’t notice if anyone stared or not, and if I think about it, I can’t remember that last time I was upset because someone stared at my daughter or me, or all of us together. We go places all the time, the mall, the supermarket, fairs, parks, concerts, anywhere we please. My daughter is still the same as always in looks and noises and all of it. If people are looking I am oblivious to it and that is a nice way to be.  After all, she is a fascinating person.  I find myself staring at her when she is happily watching TV, playing with her bead toy, or just looking up at the trees because she is such a wonder.  With the deficits in her brain, and eyes, and muscle tightness, and seizures it is amazing to see how she is aware of what is around her, who is around her, and interacting with it all.  So perhaps all those times when she was young and I felt like hiding, people were staring because (at least some of them) also saw the wonder of her.  As for the rest?  Well, I guess they must have just been rude and I don’t care.

A Writing Exercise Story

I'm taking a little break on this one and sharing with you a  fiction/fantasy story I wrote from a writing prompt for my writers group.  One day I may write a follow up to it, what do you think?

Flora to Fauna           

Penelope hurried along the path leading to her favorite spot in the park where everything seemed just a little different. Finding the hidden break in the hedges she brushed the fluttering petals off her face, inhaling the sweetness of lilacs and lilies as she entered the cool dimness of the garden.  Birds twittered and squirrels chittered as she made her way around the huge animals sculpted out of bushes there.  The work of elves and fairies, she thought as she considered each one in turn.  Passing by the llama, lamb, cow and lion she stopped, tipping her head back to get the full effect of the elephant.  “You’re my favorite” she whispered as she sat with her back against an ancient oak nearby.  Pulling a sandwich from her bag she sighed in contentment and opened her book of poetry.  After some time the effects of the quiet garden and heat of the midday sun leaking through the gently waving leaves overcame her and she fell into a deep contented sleep, her chin resting on her chest.

             “When daylight turns to darkness

             There’s a nighttime in the noon

             No sun shines down upon us

             And neither so the moon

             Then flora becomes fauna

             And the fauna cry in fear

             That is when the world will know

             The One in charge is near.”

Penelope stirred and lazily opened one eye to murky light.  “Who said that?” she mumbled, still not quite comprehending the changed conditions.  A bumble bee hovered in front of her.  “Did you say that? I couldn’t quite hear you if you did.  Who’s Flora and why is it dark?  Who’s in charge?” Regaining some of her senses she waited for the bee to reply.  “You heard me,” the reply was almost too soft for her to catch the answer.  “Think about it, as you watch all that happens around you.”  “Who are you?” she asked the bee, “and what am I to watch?”  “You’re full of questions, be patient little one.” He said, and added as he flew off, “I am Bob.”  As she watched him zip away she heard a ripping sound, almost like Velcro when it’s torn apart, only thunderously louder.  The ground around her began to shake and the tree trembled behind her.  She looked about her through the greenish dim light terrified with the realization her topiary friends were galloping about, bumping into each other.  The elephant stood in front of her, loose roots hanging off its legs spewing little balls of dirt as it shook them as one would do after standing in one position too long.  Wide eyed and trembling Penelope looked up into the creature’s eyes which emitted an odd brown glow as it commandingly intoned, “Since you have always shown me kindness I will carry you on my back to keep you safe during the uprising.  Climb up my trunk and settle yourself securely, and hang on to my ears.”  The child, though shaking in her shoes, obeyed and did as she was told.  From her vantage point on top of the behemoth she could see that all the trees shivered and the topiary animals were spreading out through the park.  People ran and screamed in horror as loose roots and dirt pellets rained down, for when they tore free of the earth they also gained size.  As her mount picked up speed she began to relax and take in the pandemonium.  Panicked birds flew in screeching circles after being disturbed from their roosts by trembling trees. She saw dogs and cats huddling together behind boulders or running neck and neck for the nearest building’s entrance in competition with people, squirrels, and every other animal in the area.  All were whimpering in fear and just when she thought she couldn’t stand to see any more she heard buzzing and felt something land on her shoulder.  “How are you dear?” Bob inquired barely audible. “Are you starting to understand?”  Penelope, still looking at the masses crowded and trembling in the buildings entrances, sighed and murmured, “You are the One in charge.”   “Yes,” he purred, “You are perceptive, my dear. The topiary witness many crimes against nature as they stand their silent watch. Everyone must begin to change their ways and care for the Earth and all life forms, plant and animal alike. Nature out of control is a fearsome thing and hopefully this display will stay with them so they begin to change their ways. Now, time for you to rise, rise, rise!”  His voice got louder as Penelope began to float up, and then down, down, down.  The sounds of chaos became fainter and further away as she wafted as a leaf on a gentle summer breeze back to the base of the ancient oak.

            “Penelope!” she heard through a drowsy haze, “There you are dear, wake up!  Goodness, you must have been tired.  I’ve been calling you for five minutes!  Didn’t you hear me? I had to come all the way in here to get you.  The picnic is over; it’s time we went home.”  Standing up and picking up her bag she walked alongside her mother, turning to look at her friend the elephant as they passed.  “Mommy, I had such a dream!”  “You can tell me all about it on the way home, Penelope; your dreams are always so exciting.” As they made their way through the park, a bumble bee trailed behind.

 

 

 

River

The river flows as it must toward the sea

While its surface reflects all the feelings in me

The breeze breaks the surface in ripples and dips

The sky is reflected distorted by this

Fish break the surface from shallows and depths

While gulls, ducks and osprey dip feet and wing tips

Motor boats speed while kayaks float slow

All making waves on the surface as they go

At night all is quiet, it's smooth as plate glass

Resting and preparing for when dawn comes at last

And always, still always, the flow toward the sea

The current of the river carries hearts of poets like me.

The mighty St. Lawrence, Alexandria Bay, New York.

Inclusion Story

I wrote this recently in response to a writing challenge from "The Mighty", a website to which I've become a contributor.  They don't use every story submitted to them, so since they didn't use this one I thought I would share it here. 

After six years in a self-contained therapy centered special education school located several towns away we decided to bring our daughter back into our town schools for her education.  We wanted her to know that she is part of the community where she lives.  It was a scary thing to do as the class she would join had recently relocated from an elementary school to the middle school, and she would be one year younger than the sixth graders. We didn’t know how welcoming the general education staff nor school administration would be but hoped for the best, and prepared to fight for inclusion if necessary. The principal was welcoming of the class, and seemed generally supportive.   If there is one person I could credit with the success of the transition for both Hillary and our family it would be the chorus teacher.  He embraced her and her classmates and helped the other students understand how to interact with kids who were differently abled.  Even though Hillary and her classmates were all nonverbal and had a myriad of serious challenges he fostered an atmosphere of acceptance and focused on what people can do, not what they cannot do.  He stood up to the few concerned parents at back to school night who were afraid that somehow this group of differently abled students would lessen the class for their typically developing kids.  With the help of her teacher and through the use of dance routines, adapted rhythm instruments, assistance from classroom staff and student volunteers my daughter and her classmates were able to fully participate in concerts, Christmas caroling, and other music related activities over the years.  We were even able to see something we never dreamed possible in both of our girls on the stage in a concert together.  He included them in keyboard labs, and made sure he told us how excited Hillary was to be making her own music on the keyboard. He attended Hillary’s IEP meetings with positive input.  This wonderful teacher brought his other classes to my daughter’s classroom to visit and participate in special activities and for birthdays to sing happy birthday to the honoree.  Because of his attitude and efforts, Hillary was able to make friends and be known in her town as part of the community, not just the girl in the wheelchair.  When she graduated from the middle school it was Mr. D who asked us personally to please allow her to participate with her peers in the graduation ceremony, as not all the parents of her self-contained class in years past had allowed their child to do so. He assured us that we would be able to sit in the front row right in front of her so that if she had a seizure or needed us we would be right there.  We agreed and are glad we did.  Four years later when she graduated high school we invited that teacher to be Hillary’s honored guest and he gladly accepted.  I have no doubt that without such a special person acting as a bridge between Hillary’s world and other students the transition to our town school would have been much more difficult for all of us.

The results of our decision are still being felt in that when we are out and about in town or a surrounding community we generally run into someone who knows Hillary from school and approaches to say hello.  I'd say this is really a success story for inclusion.

Spider Hate

Spiders are evil

They're creepy and will not die

I hate them

I've written about spiders before. My post titled "Tarantula" is one of my most viewed. This year around the outside of my house seems especially infested with the ghastly creatures. In fact, I've run out of bug spray--I must get more because nothing else gets rid of them! I tried shower & tub cleaner, window cleaner & disinfectant spray. They curl up, drop to the ground & the next day there they are with a new, more spectacular web than the one I destroyed the day before. Earlier in the summer it was small neon green ones who are very clever in their web building. They spin layered ones and sit in between the layers watching for their prey and laughing at me as I try to kill them with my ineffective sprays. Now there are orange and black tiger striped fat bodied short legged ones who are growing bigger daily. They also are unaffected by my cleaners. They build huge one layered webs places where I want to walk or sit--across the deck ramp, across the patio chairs, from a tree to the driver's door on my van, and from the bushes to my daughter's car. One day I was sitting on the deck with Hillary, just enjoying the lovely summer weather while reading a book when I looked over at her and one of those evil creatures was busily spinning a web between her wheelchair and the house! Not cool! Thank goodness I keep an old broom handy on the deck so I could get rid of it!  It's also terrifying when I'm outside relaxing, notice movement out of the corner of my eye, turn my head and see one of those vile things in the middle of it's gossamer trap undulating in the breeze not 5 feet away from me! It's bad enough when I look at my yard in the morning and see it's dotted with doilyesque patches highlighted by a heavy dew and realize the monsters were busy overnight decorating things. Even now, as I sit here on the deck typing this I see those silken threads caught by the sunlight stretching between the hydrangea and one of our cars. And don't even get me started on webs inside my van! That is s story for another day.

This is a picture of a spinner I enjoy while on my deck. It's nicer than a picture of a spider.

Traveling Fun

 

          Traveling with someone who can sit only supported in a wheelchair presents certain challenges others don’t think of.  When my daughter was younger and we encountered physical barriers we always managed to get around them by lifting her, wheelchair and all up stairs and over curbs.  As she has grown and we have aged the physical barriers are a bit more challenging.  Sometimes others step up and help, but mostly now we look for places that are wheelchair accessible.  We enjoy vacationing in small resort towns staying in hotels situated within a short walk of restaurants, shopping, and other low key attractions so that we get a break from the task of loading and unloading her wheelchair in our van.  Most of the buildings are old and some have been retrofitted with ramps and elevators which make for some interesting entrances.  There’s one restaurant we liked that had a flight of stairs to get to the dining area and bar which had an open elevator right inside the entrance next to a flight of stairs into the bar.  Since my daughter is unable to operate the lift herself someone must ride up with her, which means that for unwary patrons sitting at the table nearest the lift they are suddenly confronted with two heads rising from the floor.  It’s amusing, but awkward, forcing everyone at the table to move to allow for the elevator door to swing open and her and companion (usually her sister) to exit. It would be fun if they added a fanfare and sparklers emanating from the lift as it rises to give some flair to the entrance of the wheelchair user.  Another restaurant has built a ramp around the side of the building which opens into the bar area located on the second floor.  Here again people must move out of the way so we can gain entrance.  We’re fortunate in that we’ve never encountered anyone annoyed by moving, most are happy to make room for our passage. My funniest experience with my daughter and elevators came on a cruise ship.  When the other girls in her scout troop were graduating high school they celebrated by taking a 4 day cruise.  I was initially not planning to take Hillary because I couldn’t imagine how I could care for her alone without all the equipment I use at home and when we take a road trip.  After thinking about it and speaking with her troop leader it was decided that along with me, Hillary’s school aide and my older daughter would accompany the girls as chaperones and help with her care.  The accessible room we had was for 2 people so Hillary and I were on a different deck from the others in our group.  There were banks of elevators, which were in nearly constant use.  Meeting up with everyone became challenging when it was just my daughter and me.  I’d push the button for an elevator on one wall, and one on the other wall at the other end of the row opened.  By the time I got there with her one of two things happened: the car was full, or it took us too long to get there and the doors shut and it moved on as we approached.  I found it quite frustrating at the time, but when I think about it I laugh because it was such a ridiculous thing to be pushing buttons and hurrying from one side and end of the rows to the other with Hillary and her chair before finally catching one of the cars.

          Traveling with a wheelchair user presents some challenges, but somehow we always manage to make it work. 

Park Days

Recently I’ve started going to the park more often, there are nice walking paths at our park in town and at a park in a neighboring town.  Our park is fairly young, built on old farm land and they are still developing areas of it.  I like to go there alone because the terrain is hard to push Hillary’s chair around since there are so many ups and downs and she is heavy.  Plus there’s a gazebo there where I like to sit and read or sketch.  It’s near the all veterans memorial and so pleasant when there is a breeze and all the flags are making that little snapping noise as they dance on the wind.  It faces, as well, out over a pond and there are trees and bushes nearby where birds twitter and chirp in the morning sun.  

Looking across a soccer field toward the pond at my town park.

The last time I went there I walked along the paved path until I got to a newer ball field with a dirt road running along it and followed that until it ended with dirt piles on one side and a gate blocking traffic on the other.  The look and smell of it brought me back to childhood and the “new road” by our house.  It was a dirt road edged by wildflowers and weeds on each side and eventually it was paved but for the longest time wasn’t and was blocked off on each end by phone poles.  We walked along that road to get to the local Acme grocery store, my friend Cathy’s house, middle school, and sometimes to walk to church.  I loved the sound of my sneakers crunching on the stones and used to pick Queen Anne’s Lace as I walked along.  Later at home I’d put the flowers into a glass with colored water and watch as they turned blue or yellow as they sucked up the liquid.  Those were nice days.  How pleasant it was to relive those times as I walked in the park, and reflect on nice memories as I sat in the gazebo sketching a tree that day.

         A few days later I took Hillary to the park in the next town over.  The paths there are easy to push her on as it’s flat there and wind through sunny fields and under shady trees giving us a nice mixture of sun and shade so we didn’t get over heated.  I love the smell of a field in the hot summer sun and Hillary enjoys being on the go and looking all around.  Later we found a bench along a tree lined path by the lake and relaxed there, having a picnic lunch and enjoying the beautiful day and scenery.

         A trip to the park leaves me feeling refreshed and rested as spending time in nature generally does.  It’s one of my favorite things to do in the summer months.

In A Slump

         I’ve been in a bit of a writing slump lately, in fact I’ve been in a life slump since my last day of work (until September).  It feels as if everything is out of whack somehow.  I’m not sure why exactly. There are phone calls and appointments I need to make for me and for Hillary but I just keep putting them off—procrastination!  There are closets and cabinets that need a good cleaning out and other cleaning projects I plan to do over the two short months before I return to work.  There are bushes to be trimmed and weeds to pull and there are spiders to be dealt with out there!  In past years we’ve had those big striped spiders that I hate to deal with, this year it’s smaller neon green ones which are more difficult to get rid of, it seems. When they spin a web, it’s layered and those smart little buggers hang out on the underside so the top layer is protecting them from my bug spray. It seems their favorite place to build a web is between the bushes and my daughter’s car.  You think I hate spiders?  She hates them more. It’s as if they know this and taunt her by hanging out where she will walk.  Ugh!  Inside I have papers to shred, and plants to repot—there’s so much to do and I feel like doing none of it.  If this were my job I’d be right on it; breaking it down to this task one day, that task another and so on until all the extra stuff was done. So easy to say that I’ll treat it that way, but my boss (me) is easy going and says, “Take the day off if you want!”  My boss needs to get tougher on me! Ha ha!  Maybe my boss needs to give me some rewards for completing those tasks.  Work for 3 hours and then get a coffee and read a book break for 30 minutes, then work another hour and call it a day.  It sounds good on paper, but putting that into practice, like taking a daily walk and flossing twice a day (as my dental hygienist recently advised me to do) takes a lot of discipline which apparently     I DON’T HAVE!  I don’t think I’m alone in all this either.  I think that most of us have some trouble getting ourselves to fill in our time off with that good mix of productive work and relaxing, fun leisure time.  Time for me to go check something off that to do list and try to get out of this life slump.  Apparently since I’ve just finished this post I’m coming out of the writing slump.  At least for now.  Hey, baby steps!

        

        

Lunch Lady Taboos

You've seen those lists on Facebook, "things to never say to a horse" or "don't say these things to a contractor" but I've never seen one about lunch ladies so, I thought I'd make one: 

10 Things Never To Ask A Lunch Lady

1.) how hard is it to throw food on a plate, really?

2.) why do you charge such a high price for lunch?

3.) you know my taxes pay your salary, right?

4.) why can't I have extra food?

5.) can I pay you tomorrow?

6.) is this food organic?

7.) what is this?

8.) can you toast this sandwich?

9.)is this Pizza Hut pizza?

10.) where did you get that outfit?

Memory, A Source of Comfort

         When the day to day never ending sameness of caring for my adult daughter starts to get to me I mentally excuse myself for a few minutes to take a walk down Memory Lane.  It gets me out of the present physical situation or task that I can’t leave.

          In the summers when both my girls were young, perhaps 5 and 2 years old, we went to our town’s lake beach in the afternoons.  Since my younger one can’t walk, and I have always been determined to give her a life full of “normal” activities, I found that getting her across the sand was easiest in a bucket type baby sled we used in winter for playing in snow.  While her mental development is delayed, her physical development has always been right on schedule so she was a little bit too tall to be sitting propped up in the infant’s sled.  One day as I was pulling her across the sand, lugging a tote bag, umbrella and chair, I stopped to look around for a good spot and found that she had fallen over—sled and all!  Judging by the trail in the sand I’d been pulling her that way for about 20 feet. The whole side of her head was covered in sand.  I felt so bad!  Righting her, I brushed the sand off her face and out of her hair as best I could as she just looked at me with an expression that said “Good one, Mom!” We set up camp in that spot and continued with our afternoon.  I took her into the water in a turtle shaped float and we played with her sister and the other kids there, then she and I headed back to our little oasis where she napped wrapped in a dry towel and I read a book while her sister played. Those were such pleasant times.  I’m glad I have them in my arsenal of quick getaways which bring me the comfort of knowing that in spite of the routine “not normal” things we must do every day to care for her we have had “normal” fun over the years.

 

Rainy Monday Thoughts

Rain means a free car wash! No more green pollen dust & bird poop on the driver's window--Yay!

All the plants get a good soaking. So good for their roots!

It's cool so we can save $$ on the a/c.

I think the neighbors are going to be upset when they return from vacation to find their little screen house didn't survive the thunderstorms.

It's a good day to make banana bread and macaroni & cheese.

Rainy days & evenings are a good time to watch reruns on TV. Also for curling up on the couch with a book.

It's not a good day for the Keurig to break, but at least the teakettle still works!

I'll appreciate the sun so much more when it returns!

A Day to Remember

It's hard to believe that May is almost over, but here we are at Memorial Day. It's supposed to be a day set aside to remember and honor our brave servicemen and women who died while defending our great nation. Over the years we have seemingly moved further and further away from the original intent of the day.  The real Memorial Day is actually May 30th. I guess holidays that are not always attached to a weekend are inconvenient so the official observance was moved to the last Monday in May. Then it was kind of high-jacked by retailers hoping to boost their sales six months after "Black Friday".  Now, thanks (in my humble opinion) to both regular and social media, it has been confused with Veterans Day and we are inundated with reminders to thank a service person for their service. I'm not saying we shouldn't thank all our servicemen and women. While it is important to always be thankful for their sacrifice, it feels like we are forgetting the ones we lost. That's if we remember anything about this day and don't simply look at it as the first day of summer which of course it isn't because that comes toward the end of June. 

It's good to see that most towns have at least memorial services on this day. Some also have parades before or after such services. I think that as long as those traditions are carried on future generations will know what this day is really about and never forget our fallen heroes.

Lessons From Mom

This is the last photo I took of my mother. It was at her 76th birthday party in my back yard. Here she is with all her grandchildren. Eleven months later she was gone, succumbing to Alzheimer's and pneumonia. We all miss her terribly.

We all learn things from our mothers, sometimes things they don't intend to teach us, and some that they do. Some of what I learned is listed below.

~ yyur, yyub, icuryy 4 me!

   (Too wise you are, too wise you be, I 

    see you are too wise for me!). She 

    wrote that in my autograph book when 

     I was about 9. I don't have the book

    but never forgot the clever way it was

     written.

~Getting up early won't hurt you.

~it's possible to stack the washed dishes

  from dinner for a family of 6 like 

  pieces of a Jenga game.

~fresh baked cookies are always

  appreciated.

~Laughter daily is important.

~If you do your errands and housework    

   early in the day you can have time for

   yourself.

~Sometimes moms cry.

~Letting your kids be independent is

  important.

~Freshly brewed iced tea is best.

~Home made lemonade from scratch is 

   worth the effort.

~Walking through the woods and 

  stopping to have a cheese sandwich 

  at "diamond rock" is a great way to  

  spend a summer afternoon.

~It's ok to express your opinion.

~The simple things are what make life

   good.

What kinds of things did you learn from your mother?

~ 

Piece of Cake!

My father always said he never met a piece of cake he didn't like. I said that too until a couple of years ago. At work we used to take turns bringing in a treat to share during our break. Usually it was cake, but sometimes it was brownies or quiche or pie. One time it was lemon bars and freshly brewed iced tea. It was all delicious and shared freely between us regular workers and substitutes alike. One day one of our frequent subs brought in a cake. We were pretty excited, (hey, a treat is a treat--it doesn't take much! Haha!), and asked her what kind of cake it was. I will use only her initial, S. She  told us it was a mung bean cake. None of us, with the exception of my friend A  never heard of such a thing! I began to feel skeptical at the word "bean" as I am not a fan. The word "mung" didn't sound too appetizing either! As it turned out, our break was delayed that day so we decided to try the cake as we were working. I let some of the others try it first and they said things like "interesting!" "mmmm!" And "not too sweet!" as they stood around the table with S looking on. I took a small piece and a small bite. I quickly excused myself on the pretense of a task urgently awaiting me in the next room. I walked right over to the trash can, spit the cake into a paper towel and sent the rest of my piece after. I did not like it at all! To me it tasted like dirt mixed with green beans. That is the only piece of cake I ever had that I didn't like; although I didn't say that to S. I simply went back where the others were after a few minutes and thanked her for bringing in a treat to share; and refused a second piece, of course! I can't recommend that you ever try mung bean cake for yourself, but of course that's entirely up to you. As for me, I'm sticking with the traditional flavors like yellow and chocolate. If I want something different I might go for carrot or banana. But never again mung bean!

Something About Spring

There’s something special about spring. It’s not my favorite season, but I do enjoy it.  The days get longer little by little, trees begin to come back to life after the long winter, the sun is stronger and even on chilly days it feels good; snow and ice become memories of the trials of the winter, and hints of life beginning anew are seen everywhere. It’s a good time to try something new, rearrange things a bit and cast off old unused things to create some room in your closets, your house, yard and most importantly your life.  Those spaces will surely be filled up in no time with new and different things.  There’s something exciting about changing things a bit.  As I go through my clothes I think about when I wore things last, and decide what I still like and what I want to give away. Unused items from the kitchen cabinets will surely be bought by someone shopping at Goodwill or the Salvation Army store. Those old books will be opened with delight by someone this summer looking to pass a hot day in the shade reading while sipping an ice cold drink.  As we trim bushes and cut down saplings in the yard and rake leaves off the flower beds we plan what plants or seeds we will try there this year and vow to use our outdoor space more this year than last, changing where we put the picnic tables, benches and chairs as we sip the season’s first iced tea when the yard work is done for the day.  Spring is time to light the grill and taste the season’s first hot dogs and barbequed chicken and macaroni salad.  This year I decided to try a new hairstyle for spring and so far I can’t decide if I like it or not, but my friends and co-workers approve so I’ll keep it at least for now. There’s just something about spring that begs for things to be changed and spruced up, like we are celebrating the end of winter and dormancy and coming back to life.  I think it’s better than New Years for inducing change.  I hope you have a happy spring!

New Gadgets

Recently we upgraded to new iPhones.  Not the latest model, but still a newer model than we had.  We also purchased a wireless printer for the first time.  Imagine typing in the comfort of the living room and sending something to the printer without getting up!  Sounds good to me!

         I am notoriously bad at adapting to new technology so all things considered I am handling this fairly well.  The phone has been a breeze as the young people in the phone store were good at explaining things in language I understand, even if they were talking so fast it was difficult to keep up at times.  I was able to transfer almost everything from the old to the new by myself with just a couple of questions for my twenty-something daughter and my husband once we were home.  It’s kind of fun perusing the different ringtones and alert sounds then assigning them to different contacts and applications.  I was even able to print a picture from the phone as I nested in my couch corner.  It was with bold confidence that I set up my laptop on the dining room table and attempted to send a document to the magical wireless printer after so successfully sending something from my phone.  Alas! My technological wizardry ended abruptly!  Try as I might, I just couldn’t get the document to print.  I called my daughter into the room to see what I might be doing wrong but nothing we tried worked.  It was after eight p.m. and we were both tired so I decided to just forget it for the time being, shut things down and figure it out the next day.  Finally, mid-day, I had a chance to power up both printer and computer.  I was determined to print that document!  As I was waiting for the laptop to boot up after turning the printer on, it began to print the document from the night before, spitting papers out at rapid pace.  As I bent to pick the first page up off the floor more papers fluttered around me and slid under the table and chairs.  Subsequently I sent another document to be printed and first thought it wasn’t going to work when suddenly with a few whirs and clicks papers began shooting out in rapid succession.  This time I was able to catch them as they flew out before they hit the floor.

         I’m proud of myself for having such a smooth transition to my new electronic equipment.  Now I just have to figure out the older gadgets and computer programs I need to use.  That ought to be a piece of cake.  Gosh!  I love technology!

Smallest Vessels

         Sitting on the balcony of our hotel overlooking the St. Lawrence River just after dawn on vacation last summer I saw first a large freighter glide through the water, motor giving off a low rumble and some gently lapping waves in its wake.  Shortly after that a small motor boat zipped by, the loudness of its motor and the violence of the waves in its wake in sharp contrast to both the quiet of the early hour and what was left by the tanker.  In my notes that day I wrote the following sentence: “The smallest vessels leave the biggest wake.” I find this is often true when I think about life events.

         Those gentle wakes left by the big events of life are long lasting and change the course we are taking on the journey.  Something such as getting married is like a big freighter with low rumbling motor staying steady in its trip down river toward the ocean, surviving the rains and winds of life, and occasionally being rocked by the wake of the smaller, faster boats. Still, it’s steady and true in its movements.  The smaller craft, with their noisy motors and erratic movements in comparison demand immediate attention. Things such as illnesses, children, job losses, and even holidays are like those smaller vessels.  They demand attention; they make the waters choppy and harder to navigate.  Too many of them at one time can threaten to sink a larger ship if the captain and crew aren’t attentive.

         By far the smallest vessels in my life are my children.  They both produced the largest wakes and have changed the course of our voyage; we have nearly been knocked off course by their wakes many times.  One speeds ahead, cutting in and out of our path, while the other simply runs alongside, keeping us constantly aware of her presence.  They have both escorted us to places we would never have thought to go, but which turned out to be the most interesting and growth inducing.

         Inspiration comes from many places, and notes written on a summer vacation, forgotten then found on a cold spring Saturday morning can inspire some deep thought.  Like a pebble in a puddle, or a small vessel early in the day on a quiet river.

        

The Trouble With Handling Things Well

When Hillary was a baby I always asked the neurologist for a copy of the report he sent to the pediatrician.  In the report following the initial diagnosis of Aicardi Syndrome the neurologist told the pediatrician that my husband and I handled his remarks well.  I guess because we managed to maintain our composure and ask what must have been intelligent questions although I have no memory of that.  I do remember the drive home down Route 10, tears falling like rain as I stared out the window knowing that the life we had planned with our two little girls would be vastly different than we imagined.

         Now here we are over 22 years later and we’ve never lost the knack for appearing to be handling things well.  The trouble is that others are fooled into believing that we don’t need help. Partly because most of the time I wouldn’t know what kind of help to ask for.  How do you pick one thing out of the hundreds that you’d like help with, everything from basic house maintenance and cleaning to getting a break from the constant mental inventory of supplies and medications on hand?  Prioritizing is not my strong suit; unless I’m in a situation where things must be done in a very short time.  Somehow the stress of needing to get things done quickly causes me to focus and run on autopilot at the same time.  It’s an odd thing, and the best example I can give is when I go grocery shopping after work knowing that I have only a short time to get in, get out, and get home. And I do it one two three!  If I go on the weekend when I have no time constraints it takes much longer.  I lose my focus, I start thinking about how there are so many choices for even the most basic items. Then I might start making up little stories in my head about what other people are shopping for according to the items in their cart. Maybe I’ll see something that reminds me of my childhood and take a stroll down memory lane while walking through the aisles.  Focus for the task at hand vanishes when I have no reason to rush. There are many of us “special needs parents” in the world who just keep moving forward without much help.  I have found that when I ask for help from case managers for the state their first response is to tell me how they have other clients who have much worse situations and don’t get as much help as I do.  This makes me angry and feel like I don’t deserve help.  If we follow that train of thought, how bad do things have to be before we deserve any help? My daughter, because she does not have a trach nor require oxygen doesn’t qualify for nursing care, yet home health care workers cannot administer her medications as only nurses can do that. She cannot walk, talk, roll over unassisted, feed herself, use the toilet, bathe herself or communicate her needs.  She has daily seizures and is legally blind in one eye and visually impaired in the other.  Yet when I ask for any additional services I am told that there are people in worse situations who get fewer services.  Well that’s just sad!  So, I just keep moving through this life with as much grace and dignity as possible. 

Birthday Post, Late

         I was born in the hiccup of time between February and March in a year with an extra day.  It’s a day that many don’t understand, and leads to some confusion as to when to celebrate my birthday in the 3 years in between when there is no 29^th of February.  I think the extra day occurs because the ancient folks who made the calendar we all go by couldn’t figure out another way to keep time and the seasons going along regularly.  I think it’s complicated and if I were more energetic I’d look it up and impart that wisdom to you but alas!  I am not going to do that.  Let’s just say they had a reason and leave it at that.  Getting back to when I celebrate, my mother always said that I was born the last day of February and I think that makes sense so I celebrate on whichever day is the last one of February.  Some people celebrate on March 1^st reasoning that I wasn’t born on February 28^th which I know but really it makes no sense to me to wait for the first day of March.  If, however, someone wants to wish me a happy day and give me cake or a gift on March 1^st I will graciously accept!

         My brain works differently than many other people’s brain.  It’s nice to be unique, but it does lead to some frustrations in dealing with others on a daily basis.  For instance, if I am giving someone directions to a place I will always give landmarks for them to look for along the way because that is what I look for when going someplace either new or that I don’t go very often.  When I am on the receiving end of directions I frequently am frustrated because generally I get only a couple street names, some mileage, and second left, third right, or something like that with no landmarks.  It leads to confusion and frustration for both of us.  At work the different way I think tends to lead to my coworkers trying to help me but actually making things more difficult.  I know it looks like I need help but in my mind all is organized so that I can get through my tasks quickly.  It’s nice that they want to help me so I try not to let my frustration make me cranky. Oh the perils of thinking differently!

         I don’t know for certain that being a “leap baby” makes my brain work in a unique way, but I like to think it does.  Having an unusual day of birth makes for a good conversation starter, even if it does lend an air of confusion as to when to celebrate it!

Sucked In

It was almost a year ago that at work we were uncertain as to our department’s future and unable to get a straight answer from anyone.  This created a “the sky is falling!” atmosphere which was stressful to say the least.  Although I was certain that my personal circumstances wouldn’t permit me to return after the summer break I went to “save our jobs” meetings.  I participated in a rather public way in trying to stop what was happening with a letter to the editor of several of our local papers. It was printed in our county paper and in the online version of a local free publication.  It was copied, printed, and posted around our work area by my coworkers.  It was an excellent letter, I was told by many.  That was quite gratifying for a writer such as me!  I went to meetings, I wrote a speech for a coworker.  I tried along with the rest of my department and some from other departments and the union to stop the inevitable. I was sucked into the panic and guess what?  The sky fell; well partially.  We all still had jobs with a new company if we chose to take them.  I took a job with them as they were willing to work with my personal situation and so far so good. 

In the past couple weeks I have been barraged with information about changes to the services my disabled daughter receives; and a call to arms.  “The sky is falling!” once again, this time at the state level.  I wasn’t going to join in, my plan was to stay informed; but guess what? I got sucked in and wrote a letter which I sent to the governor, our state’s department of health and human services, and posted on the Facebook page advocating against the proposal. ‘It’s a great letter!’  ‘Very clear and to the point!’  ‘Wonderful strong words!’  Those are some of the comments I received.  Once again gratifying for a writer; but very public and out of my comfort zone.  What’s worse for me personally though is that this letter made me confront the ways in which my child is lacking.  For over 22 years I’ve been by turns confronting and on some level ignoring those things while still dealing with them.  Yet here I am laying it out there for the entire world to see.  It’s heart wounding, it hurts, it stinks.  I prefer to focus on the positives about her; all the things that she is and not what she is not.  Will it do any good?  Will any of this stop the proposal as it is written from being adopted?  Let’s hope that there are a sufficient number of us willing to lay it all out there to make a difference and change the proposal so that it is fair to all.  If not, the sky may indeed fall; or at least part of it, and I’ll be picking up the pieces again.

February Thoughts

February is spelled weird.

Every four years there is an extra day (thank goodness because it’s my birthday!)

My very good friend also has a birthday this month, Happy Birthday!

Love is celebrated this month as well as Presidents Washington and Lincoln.

It’s women’s heart awareness month.

It’s black history month.

This year it’s a very cold and snowy month.

There are noticeably more hours of sunlight this month.

A rodent started us off; I think we need a different animal to do that, like maybe a cute puppy or something.

I eat too many sweets during this month between Valentine’s Day and my birthday—but I like it!

 

 

Three Friends

         Three friends went to dinner last evening after not seeing each other for a few months.  They fell easily into conversation, drove the waiter nuts (probably) because they were so caught up in discussion of their lives they forgot to look at the menu causing him to return several times to inquire if they were ready to order.  Even after their wine glasses and plates were emptied and cleared away they lingered over mugs of ice water until they were the only patrons left and the music was turned off; as is always the case when they meet.

         It’s been over 22 years since the three friends were brought together by their youngest children at early intervention therapies.  They have two children each, the first borns typical in development and the second borns with developmental challenges of varying degrees.  They have seen each other through the many emotions of parenting both special needs and typical children, sharing each one’s triumphs and setbacks.  When one of the children succumbed to her disorder at the tender age of 16 they walked hand in hand through the darkness of grief and keep the child’s memory alive still.  Although they come from three very different backgrounds, and would never have met if not for their children, they feel a kinship which supersedes dissimilarity.  Emotions can be a powerful bonding agent, and is a large part of what keeps these three together.

         When we feel an emotional connection with someone, it doesn’t matter what the details of their individual situations are.  The details give us something to discuss; differing viewpoints to consider as we all try to figure out this crazy life we are given. It’s all part of being human and if we find others who can be our companions on the road it’s beautiful.