Quiet & Merry

Some observations this Christmas season:

There is a quiet beauty to snow falling on Christmas Eve.

Christmas trees, late in the evening and early in the morning have a quiet beauty about them.

A simple strand or two of lights outlining the front door adds a feel of merriment unmatched by the largest display of flashing lights and figurines synched to music.

One of the merriest things I saw was the small table at work crowded with the little gifts adorned with ribbons and bows co-workers spontaneously gave to each other, creating a kind of small cookie exchange.

Christmas cards strung along the ceiling of a living room create a merry decoration.

A congregation gathered together on a Sunday afternoon to share their musical talents informally is both quietly beautiful and quite merry.

The story of Christ’s birth has a quiet beauty all its own.

The Ones Who've Gone

The ones that we love who have gone on before

Are missed so much more at this time

But I see them around in the things we hold dear

Our traditions, our food, and our minds.

All those who have gone to their Heavenly home

Sit round the table on each holiday

For their presence is felt, in a tangible way

As we bow our heads briefly to pray.

Their bodies are gone but they’re here nonetheless

In the stories we tell, childhood things we confess.

Take a look and you’ll find they are all still around

In your heart they can always be found.

Christmas Past

As the Christmas season begins I can’t help but reflect upon Christmases past.  One of my earliest memories, though vague, is of being very happy to have received a “Ridem’ Fifi” toy, which was a pink plastic ride on poodle. (Can you imagine that?!)  I don’t really remember other specific toys I received, but rather impressions of how Christmas was.  My mother always baked massive quantities of cookies, many of which were given as gifts to teachers.   We did Christmas crafts together; I still have one ornament that I hang on the tree every year.  Other projects included paper chains, tin foil chains, decorating stockings, and my favorite thing was painting Christmas scenes and symbols on the windows with poster paints.  With four kids, our tiny living room was full of people all the time and extra full with a decorated tree and piles of gifts crammed into one corner.

Christmas morning was a frenzy of squeals, laughter, and wrapping paper flying as we ripped into the treasures.  Hot chocolate and Christmas Stollen were staples on the big morning in our house.  After that we’d pack up the stuffed turkey my mother had cooked all night and go to our grandparents’ house an hour away.  Although we were sad to have to leave our new toys, it was nice to be in my grandparents’ warm house which smelled of dinner, the different perfumes of the assembled women, my father’s pipe smoke, and burning wood from the furnace in the old farm house.  What a beautiful gift it was indeed to have been surrounded by the love of family on Christmas, and to have these memories.

 

Thankful

This year I decided to make a list of the perhaps lesser thought of people and things for which I am thankful on our national day of Thanksgiving.  I am quite thankful for my beautiful daughters, loving husband who puts up with me, and my brothers, sisters-in-law, brothers-in-law, and nieces and nephews, also my surviving aunts and uncles. What follows is a list of some of my other thanks.

-the lovely, fun, fabulous, hardworking, loving women I work with.  They make every work day pleasurable.

-Jackie who takes care of Hillary at school every day. 

-the chiropractor without who’s expertise, knowledge, interventions and guidance I would be most uncomfortable to say the least.

-my favorite pharmacy technician.

-having a “merry heart” and Helen Hooven Santmeyer who introduced me to that term in her book “And Ladies of the Club”.

-my smart-aleck phone which allowed me to keep in touch during our 8 day power outage following
“Superstorm Sandy”.

-the members of my writers group. 

-my Facebook friends who enjoy my nearly daily status rhymes.

-electricity & heat.

-the opportunity to share my story of caregiving with a live audience last summer.

-Alexandria Bay, NY (SIGH)

-NCIS and The Mentalist reruns

-butterflies

-free pie

-the freedom to write whatever I want without fear of repercussion

-fond memories, and funny memories

-curbside garbage pick up

-the random scraps of songs that float through my head and cause me to hum throughout the day

-readers

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Oh my dear Readers! I've been neglecting my little blog here--life's been busy and this old body gets tired easily these days.  The past two weeks have been a bit crazy what with Sandy the Superstorm the size of Europe attacking my dear home state and knocking out our power and internet for the better part of 2 weeks.  Man, I don't like being cold and in the dark for long stretches of time!  I pray that I will never end up homeless, because I can't imagine being that cold all the time, and wondering where I was going to sleep and eat.  Having said that, I wanted to share a little bit of a light very short story I wrote for the last time we were able to hold our writers group (we missed the last one because of Sandy, and still the library is without power which makes me sad).  Hopefully we'll have one in December.  At any rate, the writing prompt was: "Panhandling can be fun...."  I wrote the story as if I were a newspaper reporter, hopefully you'll find it a pleasurable read.
**I made up the name, sorry if there is a real person with that name**

Panhandling Can be Fun

                by Susan Donald

            In a recent interview with Jesse Williams, the so called “Happy Pan Handler”, I learned what lies behind his happiness.  His main mission is to have fun and spread merriment wherever he goes.  He can usually be found at the corner of “Walk” and “Don’t Walk” in front of the “Coffee Place Café” during daylight hours, except on Sundays.  “I take the Lord’s Day off”, he said, “To be thankful for all the blessings I have.”  When questioned about his strategies for keeping begging from getting him down, he willingly shared some tips.

            “Only ask folks who look like they might need something to brighten their day.  Not the ones who look hostile, just maybe the ones who look a little down in the dumps.  Usually they’re uplifted by helping someone less fortunate than them.”

            “Sing some silly songs or make little rhymes to thank people when they give a little something.  That way it doesn’t feel so much like a hand out, gives me some pride, makes them smile.”

            “Sometimes I offer to carry their bags, or pick a flower and give it to them.  That really opens up the wallet and makes them feel good about helping me.”

            “Just telling a lame little joke brightens their day and they usually show their appreciation with a bit of money, or sometimes a sandwich and cup of coffee.  Some folks just smile and nod and hand me a dollar.”

            Jesse just has an appreciation of life stemming from a life changing event several years ago when he lost his job, his home, and his family.  Even though he was really down for a while, he says one day he realized that he has only one life to live no matter where he resides or how much he has, he wants to make people glad to be alive.  So the next time to you see The Happy Panhandler, give him a smile, and if you’re feeling generous, a dollar or two.  It’ll make your day.

 

Thoughts on a Wednesday Evening

~Tomato soup and grilled cheese, mac & cheese, bread pudding—just some of the most comforting foods on Earth.

~Don’t say you’ll “never” do something because one day you might find yourself doing and enjoying the thing you said you wouldn’t.

~I’m enjoying watching baseball (Yankees) so much that I don’t know what I’ll watch when the season ends. This is a new activity for me. (see the previous thought!)

~I think the papers have won, and I need a secretary.

~2012 has not been my favorite year.

~Changes in friendships are inevitable as we all continue to grow and evolve.

~I think my smart aleck phone and I have come to an understanding—at least for now.

~Halloween is an odd “holiday”.

~Sometimes the best thing you can do is just show up and smile; the rest will fall into place.  This applies to about 80% of life.

~Sometimes you get what you want, sometimes you get what you need, and sometimes you get what you get.

About September 14th

Today my baby turned 20.  It’s a happy day.  It’s a bittersweet day.  It’s an emotional day.  Special days are always a double edged sword where Hillary is concerned.  I’m happy she is still here on this Earth and not yet in Heaven.  Every visit with her neurologist for the past few years has started the same way—with Dr. G. sitting across from Hillary smiling, beaming, looking from her to me and saying, “Well, she’s still here.  She looks wonderful.”  Could I ask for a better doctor for my daughter?  He’s the only neurologist we’ve ever taken her to.  If you knew everything the diagnosis of Aicardi Syndrome entails you’d understand his attitude.   Most children with the syndrome don’t make it to their 20^th birthday.  Yes, I am grateful for every birthday we get to celebrate with Hillary.  Yet, it’s a difficult day for me.  First is the gift.  This is one thing that just drives home the fact that she is not like her peers.  There is not a gift that will make her smile with pleasure, except perhaps a bouquet of Mylar balloons.  I know it’s not about the gift.  I do, but she deserves gifts just as much as any other family member.  So we buy her gifts, new outfits, new shoes, lotions, and most things you would expect to purchase for a age girl she is.  Unlike her sister, who is excited by gifts and shows it, Hillary doesn’t appear to care much, except for the balloons.  So I wonder, is it about her, or about my feelings?  Is there a part of me trying to pretend she is not the way she is?  Or do I just want to do what is typical in case she truly understands so she won’t feel slighted?  Perhaps the other gifts do really make her happy, she just doesn’t or can’t show it, or perhaps I feel like her soul knows and appreciates our efforts.

She had a fun day at school.  The chorus sang happy birthday to her during class, I brought in cupcakes for her regular class and they had a little party for her after lunch.  She so much enjoys being around her peers.  She brought home a gift from her “school mom”, her aide.  It was a beautiful outfit.  Once at home, things were quiet.  We were the only two here most of the afternoon.  I gave her the balloons, which I knew would be her favorite gift and bring a smile, and we opened the card and gift she brought home.  There was an e-card from an aunt and uncle which she watched on my computer, and we went outside to wait for my husband to arrive home.  It was getting late for her, she is so tired by dinner time.  After a quick dinner we lit the candles on the cake and sang the happy birthday song.  She enjoyed looking at the candles, trying to touch them, but I am careful to hold the cake just out of her reach.  Cake and ice cream and then off to bed with her; she’ll open her gifts tomorrow.  She’ll appreciate them more when she’s not exhausted.

  I didn’t finish this post that day, so I continue it now.  Saturday we went to the mall, something Hillary enjoys.  We stopped in where her sister works to say hello.  My husband and I opened her gifts with her later in the day.  She didn’t seem impressed; in fact, she seemed a bit angry that we were blocking her toy with her gifts.  She’s a funny girl!  I’m sure she’ll enjoy watching the movies we gave her, and the sweater will keep her warm.  On Sunday, she received her sister’s gifts.  Her favorite was the pair of lined moccasins.  She smiled when they were put on her feet.  Later we took her to dinner at Cracker Barrel, where she enjoyed the double chocolate coca cola cake with vanilla ice cream for dessert.

I’d have to say that Hillary had a nice birthday.  Some things I know she liked, and some I’m not sure.  I think she knows that she is loved, and that’s the very best gift we could ever give her.  I survived without too much emotion.  On to the next emotional mine field……er, holiday.

 

 

 

 

 

 

 

 

 

 

 

Summer Music

The sound track of my summer is different from the soundtrack of my work year, which is September to June.  During the work year I listen to one certain station on the radio in the morning that I can count on to keep me on track with time updates, and I’ve listened to it for so long that I really know what time it is instinctively by what song they are playing or whether they are doing a traffic update, an interview, or whatever programming is on.  Sometimes in the afternoon or evening I’ll listen to a CD or a music station on the TV.  But July and August are times that I listen to different radio stations and go to live performances.

               In the summer we go to fairs, festivals, and free outdoor concerts.  My favorite thing to do at a fair or festival is check out the musical performances.  This year I have three favorites, and they are eclectic choices.

               In June we went to a Scottish festival and the second we approached the field I was captivated by a lone piper surrounded by 5 drummers, it was Albannach, a Scottish band.  The massed bands is always powerful, so many pipe bands all playing the same song marching toward you in a block is an awesome thing, but the performance by Albannach  just fascinated me.  They are primal, and wild, and different than any other band I’d ever seen.  Needless to say I have one of their CD’s and occasionally check them out on Youtube.

               Every year we go to the local 4-H fair, and my favorite thing to do is hang out in the coffee house tent.  If I’m lucky we go on the day that Scott Hallock is performing.  We first saw him a few years ago, and something about his acoustic guitar and bluegrass style speaks to me. Primarily I’m a soft rock/pop music fan.  The first time we saw this performer at the fair he was singing a song he wrote about his grandfather.   Whether he’s covering a song like “Ode to Billy Jo” or singing an original song I look forward to seeing him every year.  He can also be seen on Youtube.

                Most recently, on our last night of vacation in Alexandria Bay, NY, we attended a free concert in the town park.  We didn’t know what to expect of the “Country Stompers”, but we picked up some sandwiches for dinner and headed off to the park.  It turns out that the band is local, has “groupies” who follow them from performance to performance, and are all over 70!  They were fantastic, playing covers of classic country western music from the Merle Haggard, Sr. era.  The groupies were dancing, and they even had a segment where the band called a square dance.  We were treated to watching the groupies square dancing, and all through the concert the audience, (my hubby and I included!) got up to dance.   A sing-along portion included “Roll Out the Barrel”, and they ended with “God Bless America” and all the groupies (mostly women of the same age as the band, I suspect) stood, holding hands with their arms raised as we all sang along.   Sadly, the “Country Stompers” are not on Youtube.  I think that may have been my favorite performance of the summer.

               In a couple weeks I’ll be back to the same old radio station and soft rock/pop, but in my head I can listen to any of these live performances any time I want.

The Speech

This is a bit longer than my usual posts.  Recently my friend sent me a text asking if I would share my story of caregiving at a meeting of the Caregiver’s Coalition in our county.  This is the speech, and Hillary was with me. 

 

My name is Sue and this is my daughter Hillary.   She is 19 years old and was diagnosed with Aicardi’s Syndrome when she was 6 months old.  Aicardi’s Syndrome is a rare disorder, only about 500 cases worldwide.  The three markers of this syndrome are absence of the corpus callosum, which is the part of the brain that connects the two hemispheres; seizures that cannot be completely controlled by medication; and very specific shaped lesions on the retinas.  Hillary is considered moderately affected by this disorder.  She is legally blind in one eye due to 11 lesions on the retina, and has near normal vision in the other which has only 3 lesions.  She has clusters of short seizures on average 3 times a day.  She has no verbal communication, cannot walk, and cannot take care of herself in any way.  She relies on those around her for everything—changing, rolling over in bed, getting into and out of her chair, bathing, and feeding.  She eats only mashed or pureed food and thickened liquids but doesn’t take in enough for good health so has a feeding tube as well.  I am her mother and her primary caregiver.  My husband and my adult daughter pinch hit for me, but 99% of the time I’m on deck.

Caring for Hillary has impacted me in many ways.  The emotional impacts cycle around the same as the grieving cycle does.  Disbelief, anger, and sadness are likely to hit at any time, sometimes brought on by something as benign as a TV commercial.  There have been times that happy occasions took on a bittersweet tone due to this cycle.  Whether it’s because she couldn’t join other children in a basement playroom when at a dinner party at a friend’s house, or because there’s no room for her wheelchair at the holiday dinner table it’s sometimes a hard pill to swallow.  

Financial impacts come from the cost of supplies and equipment that are either not covered by insurance or Medicaid at all, or are only partially covered.  Also impacted is my ability to work at a full time job.  I’m lucky to have found a part time job in the school system so that my schedule and Hillary’s are about the same, limiting how often I need my husband to take time off to stay with her.  There are only so many days that can be taken off a year and some must be saved for illness or emergency.

My health is probably the thing most negatively impacted by caregiving full time.  I have chronic back problems which are made worse by the physical demands of moving my daughter.  Other health issues are impacted by the need for someone to always be with her.  I have scheduled surgery around her pick up and drop off times from school.  No matter how I am feeling the same care needs to be given.  I’ve had pneumonia, stomach bugs, vertigo, and cellulitis at one time or another and still had to get up at 5 a.m. and get her up and out the door to the bus.  It's better to send her off to school so I have 6 hours to rest than to keep her home when I'm not well.  Being a caregiver is a non-stop, no time off full time job.

I wear many hats as Hillary’s caregiver.  First I am her mother.  Other hats I’ve worn are nurse; physical, occupational, and speech therapist; wheelchair tech; case manager; and advocate. Last year the brakes on her chair broke and although the vendors are quick to come out and diagnose a problem, they are extremely slow in fixing it.  In spite of my having given them my credit card information and asking that they go ahead and order the part so the repair could be done quickly it took at least 6 weeks for the repair.  In the meantime, I figured out a way to make it work.   I’ve gotten money back from a health insurance company when they were not processing claims properly, I’ve gone toe to toe with school administration, and I’ve fought with the DDD to get the help and equipment we need to keep Hillary at home, in her community and happy.  I’ve written countless letters over the years and one of the things I’ve learned is to never send a letter to only one person.  I copy many people on every letter I write to anyone.  I’ll copy to the person’s supervisor, their supervisor, my state representatives and senator, the head of the state agency involved, the public advocate, the governor, an advocacy group, and anyone else I can think of.  The more eyes that are looking at a letter, the harder it is to simply brush me off. Eventually someone will look at that letter and say “hey, this isn’t right” and make a call that gets things going.   I’ve also learned to keep most of the emotion out of the letter and to be specific as to what type of help I am seeking.  Keeping a more businesslike approach has served me well.  Another area where this approach has been useful is during meetings.  When I have felt my emotions getting the better of me, I have stopped the meeting and either taken a break or asked that we reconvene another time, or suggested we finish up with a phone call in a few days.  This approach has allowed me to be the one in control, not someone else who doesn’t know my daughter as well as I do.

My greatest caregiving needs are equipment and respite, and I don’t think there could ever be enough respite.  The logistics of getting Hillary around and making sure there is someone to care for her when I am not there are at times daunting.  I can’t accept an  invitation, make an appointment or even go to the store without thinking about what Hillary will be doing, where will she be, who will be with her.  With our wheelchair conversion van I can take her most places if need be.  There are times, however, that it is either inappropriate or physically impossible because of barriers to the building to take her with me.  If my husband has to work late, my older daughter is working or has a class, and my respite worker is unavailable I may have to turn down an evening or weekend invitation or cancel an appointment.  If our van breaks down, we are stuck, and Hillary goes nowhere except to school.  We have a patient lift in our house which has been wonderful, and if that ever broke we’d have a serious problem as we are unable to lift her without it.

I don’t mean to focus on all the negatives.  Hillary has been in public school in our town for 12 years.  She’s been in chorus, been a girl scout and in town parades.  We go shopping and to festivals, fairs, parties and places most families go.  We’ve learned, because of Hillary, to truly relax while we’re on vacation.  She cannot keep up with a frenetic pace, so vacations are the time we really slow down and just rest and unwind, visit one attraction a day, or just enjoy the town we’re vacationing in.

In closing, the past 19 years have been challenging, but at the end of the day, when she’s snuggled into her bed, Hillary is simply my baby and I am her mother.

Odd Things

So far this has been a year of odd things for me.  We’re beginning the 8^th month and I think I’d like to review.

-Going to the chiropractor.  I’ve done that a lot this year, and as grateful as I am for the help and healing I have received, it is an odd situation to be in.  There I am, lying on my stomach on a table with my face mashed into the paper covering the little cut out in the head rest talking to someone I can’t see while he manipulates my spine.  I wonder what it would be like to talk mostly to people’s backs all day?  One time my regular chiropractor was out and his associate treated me.  Wow!  I didn’t realize how much I trusted my doctor until that day, I couldn’t relax, his methods were different and by turns I felt like a rag doll and as if I were going to fall right off the table.

-My legs.  Well, once I had the cellulitis which delayed by a month the delivery of steroid injections for my back pain, all the doctors and nurses wanted to look at was my legs.  They still look at, touch, comment on and ask about them.  At one point I told the doctor he wasn’t allowed to look at them anymore.  Everyone there laughed; I’d just woken from anesthesia—but I was serious!  Enough already with my legs!

-Hillary throwing up on the dentist and the hygienist commenting on my sneakers immediately after—way to fill and awkward moment!  Speaking of my shoes, the chiropractor frequently comments on them.  It just occurs to me that medical people are spending an awful lot of time looking at the bottom of my extremities.

-Being greeted by people who know me and I have absolutely no idea who they are, even after they tell me.  Kind of awkward to have to tell them I truly have no idea who they are after they tell me that we went to the same high school.

-Physical therapy.  Seriously, I’ve been having some and every time I look around I think how odd it looks with all the assorted adults doing strange exercises—me balancing on a ball while raising opposite arm and leg in turn while a lady walks sideways on the treadmill and a man, wearing what looks like a foam bath mitt, stands facing the mirror wall slowly running his mitted hand up and down the mirror, while still another man lies on his back on a table doing the same motion I am on the ball.  If an alien saw us, I wonder what they would think.

-Me with a smart phone—‘nuff said!

-Me trying to figure out which button on the remote for the new van opens the door I want to open.  Seriously, I had every door opening and closing simultaneously in the parking lot of Hillary’s doctor’s office.

Ok, so those are just a few of the odd things that have been happening in my life this year.  I hope your odd things are few and far between.

The “ON” Button, Please

               Recently I borrowed my 23 year old daughter’s car.  It’s a pretty zippy little car into which she had installed a new radio when she first got it.  I remember my first car and its radio.  Turn the knob to “on”, adjust the volume with the same knob, and then turn it off with it.  So easy!  I could not figure out the radio in this car.  There was no “on” button.  There was a screen saver that told the time for a nano second every 30 hours or something, because I never once saw the time.  Thus I arrived at an appointment in a flustered state thinking I was late.  I was on time.  I tried at every stop light to figure out how to make some music come out of the speakers.  All I could find was an “off” button which I stabbed repeatedly thinking that perhaps the maker thought turning it off might be more important than knowing how to turn it on.  There were buttons with arrows, and letters, I think one said “source”.  Driving down the highway stabbing at buttons trying to get some music going in the little car; now that’s the way to get to an appointment!  This of course is just another incidence of my troubles with modern electronics.  I’m still learning the ins and outs of my smart aleck phone, and now this radio.  Thank goodness it’s not in my vehicle, which was in the garage for repairs the day I borrowed my daughter’s car.  Once my vehicle was ready for pick up my daughter drove me to the garage.  I told her of my trouble trying to turn on her radio.  With a mildly amused smirk she pointed to the proper button.  It was the one marked “source”.  If I sat in that car for a year I wouldn’t have ever guessed that was the one to turn on the radio.

Writing Prompts

From time to time at my writers group we agree to use writing prompts to have something to share and discuss at our next meeting.  Sometimes I share them here, this is one of those times.  Just a little light reading for you on a hot summer day.

This writing prompt was "I used to think..."

            I used to think Candyland was a real place.  The lollipop forest, and the pool of root beer with a vanilla, chocolate and strawberry float were places I wanted to visit.  As a child with a fertile imagination I also thought that leprechauns lived in the hole at the base of the old maple tree that grew near our porch.  I thought Rudolph really lit the night to lead Santa on his rounds and Frosty the Snowman really came to life.  The whole world was like me, with clean running water, a soft bed at night, and loving parents.  Everyone, I believed, had nice schools, books, and enough to eat always.  Sometimes I wish I could go back to that time when everything felt so simple.  To have that bubble of innocence around me, how restful that would be!

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 This one was "They had nothing to say to each other...."

Uh oh!

They had nothing to say to each other as they sat together looking at the body.  Each going over in her mind the series of events leading up to this moment.  Sandy found her voice first.  “What have you done Jen?”

Jen swallowed, and croaked, “Nothing, he just stopped and died.”

“I don’t believe you.  You were always talking about poisons and how a good whack with a hammer would get rid of him!”  Looking back at the little body Sandy whispered, “Poor little guy.”

“Oh cut it out Sandy!”  Jen’s voice got louder as she went on, “You wanted to be rid of him as much as I did.  ‘Poor little guy’, oh please!”

Sandy and Jen froze at the sound of approaching footsteps.  “Is that my Joey?” With fear in their eyes the girls turned to look at Mrs. Higsby.  As Sandy opened her mouth to answer she was interrupted by “Yip! Yip!” and nearly lost her footing as the ball of fur that was Joey scampered through her legs to his owner.  Not noticing the looks of disbelief on the girls’ faces, she handed each of them a five dollar bill and said “Thank you young ladies for taking care of Joey for me again today.  See you next week!” The girls were still gaping after her and the little dog long after they had disappeared from sight.

The Smart (aleck) Phone

Well, I am now the reluctant owner of a brand new “smart” phone, or as I like to call it (when I’m not cursing at it), a smart-aleck phone. I can think of nothing in recent memory that made me feel more stupid than this piece of electronic wizardry.  Why, I have been asked, did I purchase it if I don’t like it?  I’ll not get into all the reasons, but suffice to say data share plan, two family members who were interested in them, and passive aggression of sorts.

The first problem arose when the salesman, we’ll call him “Joe”, was transferring contact lists from our old phones to our new ones.  Of the three of us, mine refused to do it.  I don’t know if my old one refused to let go, or the new one refused to accept.  “Joe” told me I’d have to do mine manually.  I told him that I should get a 5% discount for my trouble, but he just gave me an amused look and continued entering things into the register.  Next, the screen protector on mine had bubbles in it, in spite of him trying twice to put one on smoothly.  I suggested another 5% discount might be a good will gesture.  Again the amused look while entering data.  Perhaps he was a bit miffed because in spite of his urging us to purchase cases for our phones from him, we huddled briefly and decided that we would go to a nearby discount store and purchase them for about 40% less, thus robbing him of some of his commission.  When he told me the total I just about passed out, but handed over my card and smiled.

To celebrate our new purchase we decided to stop on the way home for dinner.  While waiting, we took out our smart phones and tried to figure them out.  Of course, my 23 year old daughter had no problem, and a bunch of “oh  cool!”s came from her.  “Hmm!” and “Ah ha!” could be heard emanating from my darling husband, while I sat there muttering curses under my breath trying to figure out how to do the most important things I want my phone to do—make and take calls, and text.  Once we were home it was time to try out all the ring tones and set all of that up.  I confess, I am not crazy about any of the sounds that come with the phone, but chose them anyhow.  Next came me trying to download “apps” and then figuring out how to turn the sound off of the notifications.  Really, I don’t need to know every time someone comments on something on Facebook that I have “liked” or commented on!  Nor do I need to know every time someone takes a turn on “Words with Friends”.

Then came the day that I had a voicemail, and couldn’t figure out how to listen to it!  By the time I thought to put the phone to my ear, all I heard were the last 2 words of the message.  I tried and tried to listen to it again, but could not figure it out!  Everything I tapped on either did the opposite of what I wanted, or did the same thing over and over, and wouldn’t clear.  Tempted as I was to throw the stupid thing out the window of my van, I compromised and threw it on the empty seat next to me.  The following day I had my daughter show me how to listen to voicemail.

A week after purchase, I am slowly coming to terms with my smart-aleck phone.  It’s like a new child; try to figure out how it works, then work hard to get it to do what you want.  If it starts talking back to me or sticking its tongue out I’m definitely throwing it out a window!

More Bruises to My Heart

It happened again.  Yesterday I filled out some forms required to plan for Hillary’s future.   I don’t like to think about the realities of that, it makes my heart hurt.  The forms require writing down everything that she needs done for her—everything she can’t do—which is pretty much everything.  It gives such a sad, depressing “snapshot” of her.  It doesn’t tell who she is, what she’s like, what she can do.

I went to the library today, leaving Hillary with my wonderful respite woman for a few hours so I could run some errands and have some time to myself.  While there I noticed two young women in wheelchairs with their attendants.  I couldn’t help but think how in just 2 short years Hillary will no longer be in school, and our options for what she will do to fill the hours of the day are limited.  One option is to hire attendants to take her places.  While I know that it is wonderful to have options at all, I think how sad and lonely that would be for her.  She likes to be around other people who are lively, talking, laughing, doing things.  None of the available options for her include as much of that as she has at school every day.  It hurts my heart.

I always knew that these days would come.  There will be more and more forms and decisions to be made over the next couple of years in regards to Hillary.  Just because I knew this was coming, doesn’t mean it’s any easier.  At least I wasn’t blindsided by it.  Forgive me if I occasionally post about these things, they are not happy thoughts, but necessary, and by confronting them I can continue to give Hillary the happiest life I am able to provide.

When I Think of Dad

When I think of Dad I hear coffee percolating very early in the morning, smell eggs and toast cooking, and hear heavy footsteps leaving the house.

I hear a deep voice reading “Little Red Ridinghood” doing all the characters’ voices, especially the wolf.

I see kind brown eyes and a white t-shirt, and country music on the stereo.

I remember early cold winter mornings and a tired man starting my car so I could go to work on Sunday, his one day to sleep in.

I hear muttered comments and laughter at a family gathering.

I see old cars held together with spit and a prayer carrying a family of 6 wherever they needed to go.

I see green lollipops, burned cookies, and grape popsicles that nobody else wanted.

I remember plastic ware in a shirt pocket at family reunion picnics.

I hear silly rhymes and someone calling me “Snicklefrits”.

I know that I grew up with love, respect, and understanding nobody else could have given.

The Past

With the windows down and the radio loud she’s singing as she cruises ‘round the town.

  She’s got her short shorts on and her hair’s streaming in the breeze, she’s smiling and she’s waving bringing guys to their knees.

  She’s nineteen, and it’s seventy nine, the summer’s rolling on and all is fine.

 Billy Joel is singing “Stranger”, and she sees her greatest danger as the boy she’s been stringing along.

  Out of the blue comes a sound to her that’s new and it stops her dead in her tracks.

  It’s a little baby girl who is the focus of her world and reality of a sudden is back.

   She’s in a mini van with a bottle in her hand, and a seat full of groceries to boot.

  She’s wearing mom jeans, Elmo’s singing ABC, and her world is surrounded by cute.

 She thinks back on those days when just cruising was the way to spend her free time in the sun.

  Now she’s by the kiddie pool and she’s wiping off the drool that has just run down her arm.

  She reflects as she coos that those days may have been misused but they sure were lots of fun.

  Now that boy is a dad because of all the fun they had and she wouldn’t have it any other way.

  She still sings as she goes, but it’s “head, shoulders, knees, and toes”, and she’s happy with the life she has.

Odes to Comfort Food

I've been feeling under the weather lately, and here are two foods that I find comforting.


Ode to Tomato Soup
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Tomato soup how I love you

You warm me up inside

I feel so comforted by you

When you I imbibe.

When I was young my mother gave

Tomato soup to us

On cloudy days in summer

And cold, cold winter days

When all else fails to cheer me

You bring some sunny rays.

You are high in vitamin c

That fact we can’t deny

But how you comfort, warm, protect,

 And truly satisfy makes you the apple of my eye!

 
Ode to Grilled Cheese
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Grilled cheese oh such yummy stuff

So gooey, warm and good

Dipped into tomato soup

You are a perfect food.

Crunchy on the outside

With your insides soft and warm

Cut in rectangles, squares or triangles,

I love you in any form.

White bread, rye, or on whole wheat

It doesn’t matter much

American, cheddar, provolone

Mozzarella, gouda, swiss

It’s all the same to me,

Toasty yummy, gooey warm,

That’s how you were meant to be.

(S.Donald)

On Loss and Grieving

Sometimes things happen and you don’t know what to say.  Sometimes there just isn’t any right thing to say.  Platitudes and trite sayings just don’t cut it when someone loses a loved one whether it was a total shock, or “expected”.  As if knowing such an event was on the way would bring any comfort!  Words are so very inadequate to express the shock, sadness, sense of loss, devastation that you know are being experienced at least 1,000 fold by the family.  You want to help, do something concrete.  I have sat with a very dear friend who lost her young daughter, just holding her hand, crying, talking, hugging, and expressing disbelief.  I have done this the day after her daughter left the Earth, and many times since in the intervening years.  I tried to figure out what the best thing to do or say is, and the only thing I can say is that it seems not mentioning the person who’s gone is the worst thing to do.  Even when talking about her makes her cry, my friend most wants for her daughter to be remembered.  Talking about those who are no longer with us keeps them present in our lives, helps fill the void somehow even though it is like one raindrop in the ocean.  I often talk about my parents who are both gone, I keep a picture or two of them around, it helps keep them in my life somehow.  Grieving is such an individual thing. There’s no right or wrong way, but not getting stuck in part of the cycle seems to be the key to continuing on with our lives here on Earth.  Just like keeping the pedals on a bicycle in one  position will not allow you to move forward, neither will staying on one part of the grieving cycle.  I know so many people who have lost loved ones recently, husbands, children, parents, siblings, and pets.  It all hurts.  Sometimes I feel like maybe I should edit what I say, what I write, in an effort to be sensitive to their losses.  If I did that, however, I’d be hard pressed to make conversation or write a letter or Facebook status.  We all lose loved ones, it’s part of our journey.  It never seems to make sense why the ones who go are chosen to do so when they are chosen.   I don’t know that we’re supposed to really make sense of it, but we try anyhow.  We’re each on our own life’s journey.  We help each other as best we can, try to learn from each other, and lend some comfort in whatever form—hugs, prayers, listening, holding hands, or just sitting silently side by side passing tissues.

I Remember

I remember the sound of my mother’s laughter.

I remember how my mother called her mother every Thursday morning.

I remember fried eggs on toast for lunch, and fresh veggie sticks in the summer.

I remember fresh black raspberries for our cereal on a summer morning that my mother picked off the bushes in our yard before we were up.

I remember the pride in my mother’s voice when she spoke to others about her children.

I remember the joy on my mother’s face on each of our wedding days.

I remember the tender proud joy of my mother when holding her first grandchild, and her second, and third, and fourth, and fifth!

I remember the first sight of each of my daughter’s faces after they were born.

I remember the pride of showing off each of my babies.

I remember sleepy middle of the night feedings.

I remember singing softly to my babies.

I remember holding the little hands of my girls.

I remember the silkiness of the childhood hair as I braided their hair.

I remember handmade gifts and cards, and bouquets of dandelions.

I remember so much more than there is room for here.

Friday’s Thoughts

1)      Once you’ve been stretched under sedation you are on a first name basis with the doctor who performed the procedure.

2)       When the ice pack feels like you’re getting frost bite it’s time to remove it.

3)      Easter decorations still up at Mother’s Day is just sad (but not as sad as Christmas decorations still up!)

4)      If this house isn’t dusted soon there will be a haboob when we turn on the ceiling fans.

5)      No matter what you say there will be someone who is offended and/or disagrees with you.

6)      Buying and sending greeting cards is a nice thing to do, and it’s fun to read all the cards in the store when picking one out.

7)      It’s comforting to find that the nurse taking care of you grew up right around the corner from you and knows your family.

8)      The doctor that calls you personally at the end of the day after you’ve had a procedure done the morning is a caring person.

9)      There is something magical about the way the sunlight hits the undersides of the tall trees’ leaves as it is setting.

     10)     There’s something about a free weekend that excites the imagination.

Telling Stories

 Have you ever had an MRI?  Well, if you are claustrophobic, I suggest finding one of the “open” type because I never thought I was claustrophobic but I have to say that when you realize that for the next 20 minutes you are going to be laying inside a white plastic tube that’s almost pinning your arms down making all kinds of  banging and whirring noises while bombarding your body with magnetic waves, you might just start to feel a tad uneasy!  When I went for the MRI of my back I found myself feeling panicked so to keep my mind off it I kept my eyes tightly shut—it wasn’t dark inside the white tube, it was quite light—and pretended that I was laying outside in the sun and each new banging and whirring sequence was a different kind of animal (squirrel, chipmunk, raccoon, bird, etc.) trying to get into the house through the roof.  I imagined in great detail their little hard hats, reflective vests, tool belts and all their tools.  Everything down to the tiny lunch pails and water bottles they were having on their breaks!  I’m happy to say that they never made it—their tiny tools are not strong enough to break through the shingles on the roof.  Oh, my mind is an interesting place!

I find that having the ability to tell myself a story is a great way to distract myself from unpleasant situations such as having an MRI, or root canal.  I have been making up stories all my life.  Not lying, but just writing stories in my head.  Some of them make it onto paper (or computer now) but there have been so mamy I never wrote down.  My younger brother and I used to take a tape recorder and make up stories with sound effects to entertain ourselves.  I remember at least one of them, not the details, but things that happened while we were taping.   We titled it "The Haunted Volcano", and I was supposed to make the sound of the volcano erupting, except that each time I started to do it we both giggled and giggled instead.  I chuckle now as I think of it.  In another part we wanted to sound of a ghost clanking chains as Jacob Marley did in "A Christmas Carol" so my brother found something outside on the porch.  We were out there taping it when my mother came to see what the noise was and upon seeing Dave with the items we were using yelled "Hey!  Don't ruin that thing!", and Dave replied, "It's a ghost" before we both collapsed in giggles.  I wish I had those tapes, but I doubt they survived.  My brother went on to write and self publish a book of historical fiction, write a sci-fi novel (unpublished), as well as newspaper and magazine articles.  I simply continued writing for my own pleasure and start this blog.

I have some unpleasant things coming up in my near future, and plan to utilize my story telling ability to the max.  If I come up with any that I think would amuse my readers, you can be sure you will find them here!

CRYING

“Every day I have a choice; I can sit down and cry, or get up and laugh.  I choose to laugh” –me (as far as I know)

          This is my basic philosophy, and it generally serves me well.  Some days it’s a difficult one to live by, but I do my best.  Aside from the stress level that’s the norm for someone caring for a child who has severe multiple disabilities, works a part time job, and living as typical a life as anyone, I’ve entered into a period of chronic pain.  I’m hopeful that it won’t always be so, but for now it’s been almost 2 months of back/hip/leg pain, a couple of tests, phone calls, treatments and not sleeping enough.  The well of tears that for years I’ve managed to keep from overflowing daily is running a little high.  A few days ago the well overflowed, and wouldn’t stop—while I was at work, no less!

          I’m employed as a “lunch lady” in our local high school.  I work with 9 other ladies who are mostly easy to work with and we have a lot of fun as well—a great mix of personalities.  We serve the whole school at the same time, which is a couple of thousand potential customers.  Not everyone can fit into the lunchroom at the same time so tables are set up in the gym, and we take 3 serving stations out there every day.  For the month of April I was manning the snack kiosk out there. 

          There’s a team of custodians who help us get all our things out to the gym and back, a process that takes about 10 minutes total to get all three kiosks, snack racks, coolers, and warmers safely moved out of the way before the students are dismissed from lunch.  The other day it was getting late and some of the students were dismissed already, and the custodians were short staffed so we were taking a different route back, going through the rows of tables and out the back of the gym rather than down the hallway near where we set up.  It’s a bit like a parade when we’re on the move, the big blue kiosk, me with the snack rack, and someone behind me with the pretzel warmer, the big plastic pretzel on top quivering.  Rushing to keep up and trying to avoid running into any staff or students on my right, I didn’t realize there was something dangerous on my left until, in what I imagine was a spectacular display, the cart stopped, I didn’t, and the momentum took both the cart and me to the floor with a crash, and a spray of chip bags and cart pieces exploding around me!  One moment I was rushing to get back and count my inventory and money, the next I was being helped up by the custodian who had been behind me asking if I was ok as staff and students picked up the cart and chips.   All I wanted to do was cry.  Crazy emotions!  I made it back to the kitchen (almost) without any tears, but once I got to the coat room and restroom they flowed.  They flowed and flowed and flowed.  No matter how many times I washed my face, took deep breaths, and gulps of water.  I almost had it together, I brought back my leftovers and all the sudden there was Linda, the mother of 4, asking if I was ok, saying my pants were ripped, pulling up the leg and telling me I was cut and needed to go to the nurse.  Then Anna, asking if I wanted her to sew the rip for me.  And I cried, every time one of the ladies asked what happened and was I ok, hugged me, patted me on the back, helped me with my work, gave me a candy bar. Every kindness made me cry more.  Honestly, the whole thing was not worth crying over, yet even after I got home, I lay on the bed and cried, got Hillary off the bus and cried. And. I. cried.   I finally managed to stop before bed.

          Was it the medication that I’ve been taking, or being worn down from chronic pain?  Well, probably it was the perfect combination of those things and ignoring what is truly a basic human need—the occasional good cry.  I regularly laugh until I cry, sometimes I think I should have been named “Silly” instead of “Susan”, but rarely any more to I allow myself the luxury (yes, LUXURY) of a good cry.  It’s an outlet that keeps things on an even keel for me, able to handle most anything thrown at me.  Just as laughing releases tension, so does crying, whether it’s from a sad movie, a moving story, or out of frustration, crying acknowledges that not everything is ok, but that’s not a bad thing.  Holding it in works in the short term, but those feelings need to be released so they don’t keep collecting, eventually overflowing at an inappropriate time (like at work over an accident).  So what have I learned from this incident? I need to slow down a bit and take time to cry occasionally over things that happen, or things that scare or upset me.  A few moments of tears helps keep those negative things from collecting so much that a meltdown occurs.

          (Oh, and of all those bags of snacks that went everywhere in the gym that day?  Not one was missing.)