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Wednesday, December 28, 2011


Well here we are smack dab in the middle of Christmas week. Finally I have some time to reflect on the Christmas season as I’ve experienced it so far. The weeks between Thanksgiving and Christmas Day were pleasant, and fairly unrushed. We started by going to Chester, not to the new retail mall, but to the old part with the quaint shops and antique stores. Mainly we went to hear and see “Cast in Bronze”, that wonderful act we first saw last year outside of Shop Rite. For those who don’t know what that could possibly be, I invite you to learn more by visiting this website It was a pleasant but cold day for Bruce, Hillary and me where we strolled down the street and window shopped, bought some sweet treats at a cake boutique, ate the best pizza on a bench outside (we couldn’t get Hillary’s mammoth wheelchair into most of the shops), coffee from a neat little cafĂ©, and bought Anna a Christmas gift. In the following weeks we went to dinner with good friends in a restaurant we’d never been to--so much fun! Anna and I baked cookies and I went to a cookie swap with the ladies from work--more fun & yummy! Bruce and I took a day off and Christmas shopped for the girls and other family members together topped off by lunch at Applebee’s. Anna and I went to lunch a few times on her day off which happily coincides with my one early day a week, and we managed to sneak in a quick shopping trip.

Things became a bit more stressful as the big day got closer. The 23rd found me rushing to finish my shopping, both gifts and groceries immediately after work, and Christmas Eve day trying to wrap gifts and argue with myself about whether or not to attend the evening candlelight service. I finally gave myself permission to skip it this year. It’s the first year I didn’t go to church Christmas Eve, I am estranged from my church for numerous reasons but generally do go this one time a year. Honestly, I felt much more peaceful not going.

Christmas Day was lovely, quiet, and non rushed--it took us about 5 hours to open gifts, as we took our time admiring, appreciating everything and had breakfast in between. One of my brothers came by for the day which was capped off with a simple but yummy dinner of pot roast and veggies, cookies and custard. Monday was spent grocery shopping for yesterday’s party, and so of course Tuesday was spent in preparing for the party and enjoying all who came. Today is rest/cleanup day, and tomorrow evening we’ll go to a party at our good friends’ house. The rest of my holiday break will be spent relaxing, and perhaps taking down the festive decorations in preparation for the return to “normal”, whatever that is!

Wednesday, December 21, 2011

Cookies, the Irrestistible Treat

A recent writing assignment here which is appropriate to the season and my recent and usual holiday pastime!  Grab a cup of something hot or glass of milk, a handful of cookies and enjoy!

It's unusual to find someone who can resist a cookie when presented with a plateful.  Whether homemade or store bought they are one of the treats most people enjoy every now and then.  What is it about them that we find so enjoyable?  It may be that they remind us of our childhood with an after school snack of milk and cookies, or perhaps they bring back memories of our grandmother or a favorite auntie.  It could be simply the need for a bit of sugar to boost our mood. Whatever the reason, we all enjoy cookies.

Cookies are known by many different names around the world.  In Australia and England they are called biscuits.  In Spain, children and adults alike enjoy galletas.  Germans call them keks, or platzchen. We've all heard of the Italian biscotti, of course, and they are also known as amaretti there.  The word "cookie" is derived from the Dutch word "koekje", which means small or little cake.  Some other American terms are "jumbles", "plunkets", and "cry babies".

The popular treats are classified by how they are formed.  T"here are drop cookies such as chocolate chip, molded cookies such as snicker doodles and peanut butter cookies.  Popular at Christmas time are rolled cookies such as sugar cookie cut outs and gingerbread men, and pressed cookies known as spritzgeback.  Bar cookies are known as "tray bakes" in England, and blondies are one type of these.  Sandwich cookies are likely the most popular store bought variety.

Cookies have been around for a very long time. The earliest cookies are thought to be from Persia in the seventh century A.D.  Cookies came about from cake dough being used in small amounts to test the oven temperature.  By the end of the 14th century little filled wafers could be purchased on the streets of Paris, as well as found among the royalty of European countries.  it is thought that the English, Scotch and Dutch immigrants brought the first cookies to the U.S. in the form of "tea cakes".

Up until the 18th century cookies were relatively hard, until the modern form became more popular by the technique of creaming of butter and sugar together.  Popular among early Americans were the macaroon and gingerbread.  Today there are countless recipes in the United States for cookies.  Who would have thought that a small, flat, baked concoction of flour, butter or lard, eggs and sugar could be such a delicious, irresistible snack?

Monday, December 12, 2011

Jesus, Mary, Joseph.....and Rudolph?

Well, I did it. I lit the Christmas fire within this weekend and am now enjoying the season. All it took was some baking, a good deed, chatting with a friend, and some decorations. The tree is up and decorated, room decorations are scattered about, and the outside decorating is complete. It looks festive, but HGTV isn’t going to be filming my house any time in the near future.
Most of my decorations are quite old or hand made by a child, or improvised by me. We use a pre-lit artificial tree, but when we put it together, the top third didn’t light! We jiggled, we shook, we twisted and tested, but the lights wouldn’t work. What to do? I drove to the pharmacy and purchased some lights and voila! Lights on the top third! When decorating the tree each ornament brings a memory either from my childhood, early in our marriage, or of the girls’ childhood. Our little bay window is graced with a glass vase I filled with potpourri and tied a red ribbon and green jingle bell around the neck, and on either side of it are the tinsel-y red star sprays that were balloon weights at Anna’s college graduation party. The piano is adorned with an assortment of small Christmas toys, some plastic, some wood, and the green sparkly gift bag balloon weight from Hillary’s birthday balloons. The wooden water pump replica lamp that one of my clever brothers made recently for my husband is festooned with a Christmas necklace made from painted stones around the shade and a tiny white seal wearing red earmuffs atop the trough. The front of the house is lit with 600 tiny lights wound around the bushes and strung along the deck rail and outlining the door. On the door is a candy cane made of gold, red and green sparkly jingle bells given to me by a co-worker a few years ago around the top of which I’ve tied a piece of red tartan ribbon that likely came off a gift at some point in time. A wreath made many years ago by my husband’s youngest sister is attached to the front of the deck flanked by plastic candy canes from the dollar store. Finally, in the corner of the deck stands a 3 foot tall wooden Rudolph Reindeer guarding the baby Jesus, Mary and Joseph. They’re not large, maybe 18 inches high, and the baby is attached to the little manger with a red twisty tie. I don’t know how old they are, but my parents were getting rid of them so we took them when we first bought our house. When Anna was about 2 years old she used to take the baby Jesus for walks around the yard in her toy shopping cart. We’ve thought about replacing them over the years, yet we don’t. They’ve become for me a link to the past with their faded chipped paint and non working lights.

So, that’s how I lit the fire of Christmas spirit within me. Now, time for cookies!

Wednesday, December 7, 2011

Can't Find It!

It occurred to me today as I was walking through Wal-Mart that I seem to be missing something. I took a personal day to keep a doctor’s appointment, and made sure I had time before it to do a little shopping. I strolled around on my way to the items I needed to buy, looking for stocking stuffers. As I made my way through the store I took in the Christmas decorations for sale, candies, all the brightly colored shiny things and hummed along to the Christmas tunes playing over the loudspeaker. Past the electronics and toys, through the holiday tableware and candles I wandered on the way to the baking aisle. That’s when it occurred to me. I have no Christmas spirit this year. I’ve tried to find it, even an ember to breathe to life. I’ve gone to hear a carillon played by the spirit of the bells, gold bird mask and all, and to look through old timey shoppes. I’ve gone to an Advent concert at church, and watched Rudolph and Charlie Brown’s Christmas, as well as various other holiday programs. I listen constantly to the Christmas music playing over the radio and still, it eludes me. I haven’t begun to decorate or bake Christmas cookies, and for me, this is late!

The Christmas spirit isn’t something that I can “get” from the store, the TV, the radio or a book. It’s something that has to happen inside of me, I know it’s in there! Somewhere, down inside of me, there is an ember of Christmas joy waiting for me to breathe it to life. I’m not sure quite what’s covering it up this year. It could be that so very many people that I know are having difficult times with either finances, health, or both, or are missing loved ones an extra bit this year. I have found myself thinking more and more of those relatives who have been gone for many years now, wishing they were here again, in person. Whatever it is, I’ll do my best to sweep it away and get to that ember of joy. I hope that you are all able to find the Joy of Christmas, and Peace.

Wednesday, November 30, 2011

Princess' Wings

One of the realities we live with as the family of an "Aicardi Princess" is that at any time she might be called Home with God. The recent passing of Katelyn is a reminder that we have Hillary for as long as God wants us to, and not a second more. I humbly offer the following poem in honor of "KK" and all the Princesses who have become Angels.

A Princess got her wings last night,

She traded in her crown,

God needed her in His angel court,

Where only love is found,

Free from the twisted body,

No more the weakened lungs,

She now can run so freely,

In God’s playground up above,

We all will miss her sweetness,

None so much as family,

She bound us all together,

With strong bonds no one could see,

God sent her here to teach us,

Though it was she we tried to teach,

Her patience was a testament,

To how hard we are to reach,

In caring for her Earthly needs,

All who knew her saw her strife,

And while trying to relieve her pain,

Gave her a beautiful life.

Tuesday, November 29, 2011

A Long Overdue Post!!!

Well, I've no excuse except for having some computer problems and a full life, but I did want to do a Thanksgiving post!  So, my scattered readers, I offer you the following "list" post of things I am thankful for.

I am thankful for the memory of a perfectly clear, bright, deep blue sky with puffy white clouds day from last summer that I spent with Princess Hillary at the park, having lunch and looking at Horseshoe Lake from a bench under the most wonderful tree which provided us with dappled sunshine that danced as a breeze played through the leaves.  I go there in my mind frequently.

I am thankful for a husband who understands that even if we can't afford to go away on vacation, we can do "vacationy" things, such as going to the zoo and out to dinner as a family, or taking a drive over roads we don't usually travel, stopping for lunch where we don't usually eat, and capping it off with a few hours on a warm Novemeber afternoon on our patio by the chiminea feeding it wood and junk mail until it's dark out.

I am thankful for a wonderful grown daughter who still enjoys being with her family, even going on "staycation" with us!

I am thankful for being able to host Thanksgiving dinner and sitting around the table over pie and coffee reminiscing with my brothers and sister-in-law about the past while all our children listen intently, learning all they can about our pasts.

I am thankful for a work environment that allows for laughter, discussion, and some argument without becoming hostile, and for a wonderful group of ladies who make it all possible.

I am thankful for having a comfortable place to live, and enough food in my pantry and freezer to feed us as many meals daily as we wish to have.

I am thankful for all of my friends; those who have known me for 40+ years, and those who have known me for 1 year, and all of those friends in between.  Their acceptance and encouragement are priceless.

Last, but not least, I am thankful for all of you who read my blog! 

Friday, November 4, 2011


As we move further into autumn, I find myself thinking of things that I haven’t for a while. Memories of being in marching band in high school, and how cold it was in the stands, especially when it was raining. Somehow, we didn’t really care. We were having fun with our friends; we had hot chocolate and hot dogs, blankets, mittens, and hats. We all went home hoarse from cheering the football team on, and chilled to the bone. The next week we were ready to do it all again. We had a game on Thanksgiving Day and it was usually snowing or sleeting as we gathered in the morning for the last game of the season. How wonderful to get back home tired and cold and be enveloped in the warmth and smell of a house where turkey and all the trimmings were soon to be served!

Halloween was a time much anticipated by me, not so much for my mother. I don’t remember many of my costumes, but I remember the feel of the plastic mask, the elastic thread that held it on, and the nylon “dress” that tied in the back at the top. When I was 16, I was in the hospital for Halloween recovering from gallbladder surgery. (Yes, quite young for such a surgery!) My friend Cathy walked to the hospital the night after my surgery, told the staff she was my sister so they’d let her up, and gave me a flower in a beautiful glass bud vase. I still have that vase, one of my most treasured possessions. On Halloween she and my friend Joan went out trick or treating and brought me some candy in a bag they took off an out of service parking meter which was placed there by the police department in preparation for the Halloween parade downtown. How bold that seemed at the time!

Other memories I have are of standing outside the middle school in a dress and tights freezing in the early morning chill waiting for the doors to open, and watching the boys all racing each other from one side of the blacktopped playground to the other. I recall walking to that same school through the cemetery with acorns falling on our heads while we rustled through the leaves collected on the path. We used to walk that same route with my mother when we were younger collecting colored leaves to take home, dip in paraffin wax, and display in a bowl as a centerpiece. The smell of the crisp air and decaying leaves never fail to remind me of days gone by.

Thursday, October 27, 2011

Writers Group Story

For any of you who don't know, (and I truly don't know how many of you readers of my blog there are--many, I hope!), I belong to a writers group at my town library.  Sometimes the moderator gives us a writing prompt to do as homework to keep us writing.  It's been a busy week, so I decided to share with you the story I shared last night for the excercise we were given.  I hope you are amused by it.  Promise I'll write something more personal in the next few days!

A man is shopping with his pregnant wife for baby items when he runs into an ex-girlfriend who he told he was not the marrying kind.


“Oooh! Look at this!” exclaimed Jamie, “Just like in the Best Babies magazine! I just knew I’d find it here, this place has everything. Here, Greg, put this in the cart for me.”

“You’re sure this is the one this time?” Greg asked, “My back is getting a little tired from all this lifting.”

“Excuse me?!” his wife replied pointing to her belly. “You think it’s not tiring walking around with this lead beach ball all day?” She opened her mouth to continue when a voice interrupted.

“Yeah, Greg-or-y,” the sarcastic voice said, “What are you complaining about?”

Jamie turned to the woman belonging to the voice behind them, while Greg paled and swallowed hard.

“Do we know you?” Jamie asked.

“Well, I know Gregory,” the woman said, “But I don’t believe we’ve ever met. I’m Amanda and this little guy is Jeff.”

Extending her hand and smiling Jamie said, “Nice to meet you, Amanda and Jeff, my name is Jamie. How do you two know each other?”

Amanda and Jamie looked at Greg expectantly. Trying to find his voice Greg cleared his throat. “I, um, well you see, we, uh, we used to see, um know each other, you know, before.”

“Are you ok, honey?” Jamie asked, taking a step toward her husband and putting a hand on his forehead. “You look a little pale.”

“Get a grip, Greg-or-y,” Amanda’s voice grated on his nerves. “Just tell it like it is!” Turning to Jamie and bouncing Jeff on her hip she continued, “We dated for about 18 months, and when things started getting serious, Greg here told me he’s not the marrying kind.”

Disbelief on her face, Jamie looked from Greg to Amanda and Jeff. “How long ago was this? In college? Greg, how long ago?”

“We broke up about a month before you and I met” he answered slowly, looking at Jeff on his mother’s hip, “I think I owe Amanda an apology or something.”

“Don’t bother, Greg-or-y,” Amanda interrupted, “We are just fine, and I see you are too.” Turning to Jamie she added, “Congratulations, I don’t know how you got him to commit, but more power to you. Enjoy your baby.”

“Babies,” Jamie replied, “Twins, and thank you. Jeff is a beautiful child. Come on, Greg, I need to get off my feet.”

With a final look at Amanda and her son Greg followed his wife to the checkout.

Monday, October 17, 2011

Monday Thoughts

Monday is best described as "Monderday" and said in a monotone.

The weekend passes way too fast, and if there were just a few more hours in Sunday I could get enough things done so that I'm not always in 'catch up' mode on Monday.

Cheeseburgers with fried onions, overseasoned tater tots, pickles and a fresh salad make a satisfying Monday evening meal.

Laughing with co-workers over lunch is a pleasant halfway point to any day, but Monday especially.

Joking with Hillary's classmate about where she was made for a pleasant moment at work.  (She was at work in the guidance office, but I told him that perhaps she had subdued both bus driver and aide after I put her on the bus this morning and was driving around town in the bus instead of going to school.)

Breezy, sunny, cool fall days remind me of growing up in northwestern NJ and trying to learn to do a cartwheel (something I never did master!).

Surprising Bruce and Anna with a simple homemade apple crisp (I didn't even use a recipe!) around 8:00 p.m. is a cozy way to end the first workday of the week. (the caramel sauce I put on my serving made it taste really special!)

Listening to the sounds of Bruce and Anna looking up the family tree on the computer while listening to and watching the "Sounds of the Seasons" cable channel playing Halloween music, showing autumnal and spooky scenes and trivia about Halloween is a nice way to end the day.

Monday, October 10, 2011

Monday Joys

I promised a more upbeat post for this time, so I thought that some simple joys from today's thoughts would be a good way to start the week.

Napping on the deck on a summery autumn afternoon with the sounds of squirrels rustling in the fallen leaves as white noise.

Going to lunch as a family at our favorite luncheonette we haven't visited for a long time and finding that the chicken sandwiches, chili dogs, and fries are just as good as we remembered.

My husband and older daughter researching geneology together, and excited by newly discovered ancestors.

Watching the princess sleep.

Homemade cookies.

Spaghetti for dinner.

Starting a new book.

The picture of a neighborhood cat sitting on the roof of Anna's car that Bruce took with my camera while I was at work.

Donating gently used clothes.

A hot mug of tea to start the day.

A bowl of cornflakes to end the day.

Tuesday, October 4, 2011

Tuesday's Thoughts

Today I am pondering some things that may or may not have easy answers.

There has been much debate lately (at least in the media) about bullying. There seems to be some surprise that bullying is an issue, and some people seem to believe it is a recent societal problem, and that we have become a “nation of weenies“. I remember my own childhood, and how beginning in the sixth grade I was bullied by some other kids, and it continued to some extent into my first year of high school. I suspect there are many people who had similar experiences. Yes, I survived to become a relatively well adjusted adult. The difference between now and then (trust me it was decades ago) is that I could get away from it. When I went home, I was safe. No cell phones and text messages, or even anyone calling my phone to harass me since they would have had to talk to my mother first. No anonymity for the caller and that was without caller I.D. Just my mother saying, “Who’s calling?” if they had asked for me. There was no internet, so no instant messaging, e-mail, or social networking account to be tortured through. Perhaps one of the reasons that bullying hurts so much more now is that there is no way for kids to really get away from it. Even if a child has a close relationship with family and can talk about it, it is still in their house, their room, their pocket.


I don’t understand why many people are so defensive and closed minded/hearted when it comes to including those with disabilities in daily life on a regular--daily--basis. What on earth are they afraid of losing from their “normal” lives by making some small accommodation, or giving the disabled a chance to do something meaningful? It hurts when I hear that staff look at my daughter and say “she can’t do anything, she doesn’t belong here”, (they didn’t say it to me, but to her aide and right in front of her), or when I overhear other staff members complaining about what a pain it is to have a disabled boy helping them. Sometimes I can’t help but wish that one day those people will be in a position similar to my daughter, or that disabled boy so they can feel the pain of being excluded from society in such a way.


Why does a boss not see that you get much more from your employees when you encourage, take an interest, and consider suggestions than you do by giving only negative comments over the phone and rarely showing up when the bulk of the work is being done? How can you expect your business to do well, and the employees to give their all under those circumstances?


So those are my Tuesday thoughts, heavy, yes, but they’ve been bugging me lately. Next post will be of a happier, lighter tone--promise!

Wednesday, September 28, 2011

Clergyman's Visit

The following is a creative account of one evening ten years ago when Hillary had bilateral hip surgery to correct a leg length discrepancy and disjointed hips.

It was the quiet time of the evening in the pediatric ward as the mother sat reading a Dean Koontz novel. She was too young to be old, but too old to be young. The best you could say was that she was born in the last years of the baby boom, and her youngest boomlet lay recovering from double hip surgery in the hospital bed next to her chair. In a full body cast and heavily sedated, the only noise in the room was her breathing and the tick of the IV pump. As her mother lost herself in the book, she reveled in the quiet. Just as she reached a particularly creepy part of the story, a voice came out of nowhere and caused her to jump and give a little yelp. She looked up into the kind face of a young clergyman who was doing his rounds in the university hospital, seeking those who needed a bit of comfort as their children recovered from surgery or illness. She laughed and apologized for yelping, just as he apologized for interrupting her and giving her a fright. She put the book aside and gave her full attention to the visitor.

It was at times awkward as the two sat there in the quiet room, noises from the hall and other patient rooms filtering in through the partially closed door. He tried to offer some comfort as best he could while she attempted to give him the short version of her daughter’s medical history from the past 9 years. She realized that each of them found themselves in the position of trying to explain the unexplainable. He however had the advantage of being trained for this. They managed pretty well, falling back on the way they met for a chuckle. The visit lasted about a half an hour and he seemed reluctant to leave. This was a mother who wasn’t hysterical, or even close to tears. Rather, she had the manner of someone who was on retreat, relaxed as she was although she did seem a bit tired. The child made not a sound while he was there, and her mother frequently looked over at her and gently touched her face from time to time.

The visit ended with a prayer for healing for the girl, and comfort and strength for her mother. They wished each other a good night and he left. The mother picked up her book and continued reading with a more tranquil feeling than she’d had before.

Monday, September 26, 2011

Monday Evening Thoughts

Lately I've been pondering some things I don't quite understand.

How is it that the company that builds and sells the wheelchair can tell me they have no idea how much a part costs until they get a quote from the manufacturer when I can find the price on the manufacturer's website in less than five minutes?

How can the people who work at the company that builds and sells the wheelchair not try to do the repair in a day or two instead of taking weeks, even when I've paid them up front so we don't have to wait for the insurance company to approve the repair, and how can they sleep at night knowing they are leaving vulnerable people in an even more vulnerable situation?

How can the mechanic tell us that the new exhaust system is louder than the old one because we have to wait for soot to build up in the system and call the noise the "harmonics" of the system, and say it with a straight face?

Why are there so very many HUGE spiders in my yard this year?

How is it that I can look into the eyes of the neighbor's cat, tell her to get the mouse I just saw by my basement window, and the next day a dead mouse is by my front door?

Wednesday, September 14, 2011

Happy Birthday Princess

 Nineteen years ago today,
a precious princess came our way,
sent for us to learn and love,
 sent from only God above,
 I've done some things nurses do,
 teachers, therapists, doctors too,
she's made us laugh, she's made us cry,
 she's made us stop and wonder why,
one thing we know without a doubt,
 she's someone we can't live without,
 so Princess Hillary, today's your day,
 Happy, Happy, Happy Birthday!

Thursday, September 8, 2011

First Week

Here it is almost the end of the first week of school/work and we haven’t seen the sun once. There are leaks in our stockroom, coatroom, bathroom, and kitchen at work. Another freezer is broken, (we lost one last year), and we started with barely enough food to serve a limited variety at all our stations and vending machines. One of our ladies called out today because of flooding, and one is not feeling well with an upper respiratory infection. We have classes meeting in the lunchroom because their classrooms are flooded, slightly impeding some of our preparations and clean up. It’s been crazy and intense so far, and it hasn’t been more than a few days since we started. In spite of all that, we are a cheerful group of women. Everyone is pitching in and helping each other as time permits, and I’m sure that anyone in the general area can hear the laughter and chatter.

Hillary seems to have gotten right back into the swing in spite of looking like a “thundercloud” the first day back. Seriously I took “first day of school” pictures that morning and she is obviously not pleased! Her regular aide, or “school Mom” as I think of her, is there to make sure her day goes smoothly. In spite of a couple of transportation issues which had me making some phone calls before work yesterday, I think the first week has gone well.

It’s very likely that by Friday night I’ll be so exhausted that I’ll fall into bed early, but that’s ok. I’ll get into the swing of these early, hectic days in no time. And perhaps the sun will come out this weekend.

Wednesday, August 31, 2011

Sometimes You Just Need Family

I’ve been feeling a bit down in the mouth lately. Partly because the summer is winding down and I’ll be returning to work. I find this to be a melancholy time of the year with shorter days, falling acorns, and leaves that are already beginning to fall off the trees. Time to look at last year’s autumn wardrobe and see what’s needed for both me and Hillary. One year closer to Hillary graduating from school and transitioning to most likely a medical day program, and in a couple weeks her 19th birthday. Another year she’s survived in spite of her life expectancy (according to medical literature I read when she was an infant) being 3 years. Those reasons are just my baseline for end of the summer blues. This year, though, things are different somehow. The “broken” toe incident, (it’s still sore, but I think now only badly bruised), the tooth extraction, hurricane Irene and the 30 hours without power, (thank God that’s all that happened to us here!), and reminders of all the things I was going to get done in the 50 or so days I had off that just never got put on the “do today!” list. For the first time in 18 years we don’t have to get Anna ready to go to school, so it feels as if something is missing.

Last Saturday, which was the day before Irene was predicted to slam into our area, I finally had the tooth pulled that my dentist of 37 years told me needed to come out 2 years ago. He uses only novocain, no gas for dental work. The good thing about that is that I can drive myself to and from, making it easier to arrange things so that someone is with Hillary. If I needed someone to drive me, it would be more complicated, finding a ride as well as needing someone to stay with the princess. Anyway, by the time the procedure was over, I just felt like I wanted to sit in the car and cry. It just felt somehow so invasive and traumatic. I never cried that day; I turned on the radio and drove the 20 miles home, distracting myself with things I needed to pick up from the store on the way home. Bruce and Anna both offered to drive me that day, but I preferred to be alone simply because I didn’t want to feel the need to talk. I should have taken one of them up on the offer, it might have been better for my state of mind; sometimes you realize after the fact what you need.

For the rest of that day we relaxed, watched TV, did some laundry and stuff that any normal Saturday would include. We woke up the next morning to heavy rain and wind, and no power. We lit candles, placed flashlights in strategic places around the house (such as bathrooms!), tuned the radio to a local station, and spent the day playing cards and keeping track of things. Not a terrible day, but always in the back of my mind the worry about when we would get power back. We need power to charge the back up battery in Hillary’s feeding pump and for charging the motor for the patient lift without which we cannot get her from the bed to chair and back to the bed. The pump, in a pinch, we can do without since gravity and the valve on the feeding bag can control the flow of formula. The lift, however, is necessary. She’s too heavy to lift, and with the rods in her back for her fused spine, one must be a bit extra careful with her. I am not sure how many lifts we get from the battery before it needs to be recharged since we always plug it in at night. According the radio power could be expected to be out for days, although we were hopeful that our area would not be out much longer.

Monday morning arrived with the hum of people’s generators polluting the quiet telling me before opening my eyes that we were still without power. We had always meant to buy a generator, but somehow it was never a priority. So it was that in the dim light over my first cup of tea (thank goodness we have a propane stove and not electric!) that I listened to the local radio for an idea of when we might expect to have power restored. Estimates were for at least 2 more days, no more than 7. I began contacting people in other areas around to see if anyone had power. My brother Dave got back to me first, they were still without power in Franklin, which is about a 40 minute drive over country roads away. An hour later he texted me letting me know their power was on. By that time I’d had offers from 2 friends who lived closer to charge things at their houses, but I chose to go to my brother’s.

Hillary and I spent the afternoon there with my brother, sister-in-law and tweenaged niece, playing games, talking, eating canned ravioli and mozzarella quesadillas, laughing, and doing a load of laundry as Hillary had leaked during the night and I didn’t want those sheets sitting around for who knew how long before I could wash them. From the time I arrived there and their neighbor came over to help lift Hillary up the stairs into their house until the time they helped me load everything back into the van for my return home, I felt cared for. Our power was back on by the time I got home, Bruce and Anna were home from work before me. As I threw out spoiled food and we got our house back to normal I reflected on the past few days. I felt better and more prepared for the transition which lies directly ahead as the summer ends and the school year begins. Even though I could have had a shorter ride and felt cared for by friends, sometimes you just need family.

Friday, August 26, 2011


This time of the year is an emotional minefield. Back to school time and Hillary’s birthday. The stores are packed with cute outfits for an almost 19 year old to love, but I’m looking at the stretch pants, wondering if they’ll stretch enough to go up and over the diaper easily. I’m looking for t-shirts without a wide neck or scoop neck. I look in the misses department and find the styles suitable for her are in fabrics that are better suited for me. It’s simply the reality that we have, but it still cuts emotionally. It was easier when she was smaller to find appropriate clothing for her. She can still fit into a girls extra large, but it would look silly on her. I try to keep her relevant to her peers, giving her the dignity she deserves and the chance to blend in as much as possible. I don’t want her to be known as the girl who dresses funny. Recently I came across a company that makes waterproof clothing protectors that look like a shirtfront. I prefer these for school and outings instead of bibs. Again, her dignity is important.

Then there is the matter of Hillary’s birthday. One more emotional mine field for me. What do you get someone who can’t tell you what they want, and who’s hobbies include playing with her bead curtain, slinkys that never wear out, and a tether ball toy? New toys end up collecting dust, as she has no interest in them. CD’s perhaps, but honestly she seems just as happy with the radio as with a CD. Books on tape (or CD)? Maybe, but truly she seems as happy with the radio as with a recorded book. She enjoys the gifts all piled on her tray, brightly colored papers and gift bags all crinkly with tissue paper and ribbon. Her interest, however, wanes once the gift is out of the wrapping. Sometimes I’m not sure what I am giving the gift to her for, Hillary’s enjoyment, or my conscience? I don’t know what the answer is. I just know that occasions such as these unbalance me emotionally. I’ll still invite family and some friends over for a birthday party; we celebrate everyone’s birthday that way. Another year survived is certainly cause for celebration with cake and ice cream, music and laughter. I’ll take some goodies to her class at school so they can celebrate with her as well.
 I’ll get through this emotional minefield just as I do every year.
At some point in time I’ll learn how to deal with it a little bit better, I’m sure. For now though, I’ll muddle along through back to school and birthday shopping, and recover my equilibrium in time for the next minefield on the calendar--Christmas.

Monday, August 15, 2011

She Rides the Bike

At night while she sleeps she rides in her dreams. Her friends and family cheer her on as the scenery slips by in a blur. She feels so free. Pedaling, pedaling looking around, taking it all in. Occasionally she stops to catch her breath, to accept compliments, to have her picture taken but then she is off again--pedaling, pedaling……….

I imagine this is what my daughter, who has Aicardi Syndrome, dreams about as she sleeps peacefully snuggled into her bed. Weekdays start too early for her comfort, as is the case with most teenagers. Once up, she’s happy to be off to school. She’s well known in the school, and sought after as a companion. She enjoys learning, and loves the noisiness of gym class, and the halls during the change of classes. Assemblies and field trips are a special treat. She’s competitive and likes to win. Ensconced in her wheelchair she goes through her day. But a couple of days a week, she gets to ride the adapted bike during physical therapy. It’s hard work for her, but she loves it. The freedom of propelling herself around the halls of the school must surely be a relief. She goes slowly to be sure, and needs help to keep her hands on the handlebars. Occasionally she needs a push to get started but makes a valiant effort to keep going, looking around the whole time. In warmer weather she goes outside for a ride. How different everything looks from the seat of the bike! Even the breeze feels different, for instead of being only on her front and the back of her neck, it wraps around her torso and legs and feels more refreshing. As she goes around the school, those who see her call out her name and cheer her on. She knows she’s accepted and valued as part of the community. At the end of the day she is tired, but happy.

My daughter cannot tell me how she feels with words, but I know by the look in her eyes and the expression on her face. I don’t know for sure what she dreams about. I like to think that in her dreams she rides the bike…….

Tuesday, August 9, 2011


"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.  Let him step to the music which he hears, however measured or far away." -- Henry David Thoreau

     I hear a different drummer.  Sometimes I think that I hear a different instrument!  Sometimes it's cymbals, sometimes a triangle.  Occasionally the beat and sound are similar to other's drums, but often the beat is different.  Waltz-like when others are rocking out, disco when others cha-cha, march like while others ballet.  Every now and then the beat of others drowns out mine and I dance along with them, although not quite in time.  No one seems to notice when I'm slightly out of step.  When my dance is different, then they notice--often they don't understand.  It can't be explained.  Need not be explained, simply accepted. Maybe it is accepted, but I'm too caught up in the rhythm to notice.  I like my beat and my dance.

     Take my views on children.  While other mothers were crying into their tissues on the first day of school, I was smiling, waving and saying, "a few hours free, what shall I do?"  My children were going to be home in a few hours, so why should I cry?  Perhaps because of my unique experiences of motherhood I understood sooner that when normal things happen, it is good, it is to be celebrated and not mourned.  Even though I do miss my oldest, she is growing up according to "plan".  Teach her well, help her to do her best, and send her on her way to becoming independent with a few guiding words and helping hands along the way.  This is the way of the "normal" world.  I also have the other end of the spectrum, the child who will never leave, never be capable of self-care or true independence.  Still, she needs to have some separation from me so she can realize her greatest potential.  Here again, I am not like many of the other mothers I have encountered.  I do not hover, micromanage.  I ask only that others do nothing to hurt my child, and allow her to build a relationship with the world as best she can on her own terms, and help her along the way.  The best I can do is to give those who are with her when I am not the information they need to keep her safe and healthy and happy.  She also hears the beat of a different drum.

Friday, July 29, 2011

I Try

I generally try to focus on the positive things that are part of my life.  Sometimes, though, I feel like I need to acknowledge the not so great things.  Lately I've been feeling like those not good things are intruding themselves into my thoughts too often.  So here I share some of the less good, dare I say crappy things that are part of my life with Hillary.

18 + years of one-sided conversations with my child, trying to decipher her cries, grunts, moans, squeals, and whimpers.  Some days I try everything that's worked in the past, checked everything I can, and still am left guessing.

22 years of changing diapers. (I'm counting the few years from my first child in that number)

Constantly worrying that the insurance will deny coverage of supplies or treatment for my daughter, and the fight that will ensue over phone, fax, and mail.

Hearing people us the "R" word and knowing they find nothing wrong with it.

Trying to get my daughter in her wheelchair into buildings and trying to get through crowds with her too.

Meeting friends or going out with my husband only after making sure my daughter will be or is cared for--she can never be left alone.

Knowing that there are people who refuse to work with my daughter.

NEVER having a day off from my main job of caring for my daughter, even if I'm sick or injured.  I've even put her on the bus, gone and had surgery, gotten home before she got home from school, and still fed and medicated her at bedtime.

Tomorrow I'll go back to focusing on the positives, and I'll appreciate them so much more after acknowledging the negatives today.  If we never felt sad, how would we know how good happy feels?

Thursday, July 21, 2011

Filling Out Forms

If there’s one thing I can’t stand doing (there are actually many things I can’t stand doing) it is filling out forms pertaining to my daughter. It’s been almost 19 years and I’m sick of answering the same questions over and over. Many of the questions get the old N/A in the blanks because they don’t apply to Hillary’s abilities. The past couple of months I’ve had a number of forms to fill out, and I kind of feel sorry for the people who have to read them because I’m not taking care to write legibly. I’m losing patience for this stuff!

When Hillary was an infant, there was still a lot of hope that she wouldn’t be too far behind her peers. Even with her diagnosis of Aicardi Syndrome we felt that her chances of being only moderately developmentally delayed were at least 50/50. HA! Always the optimist, we went from specialist to specialist, filling out forms, convinced that someone would find something that could be “fixed” and she would begin catching up. Even though her pediatrician kept warning, in his kindest manner, that the gap would get larger the older she got. I loved Dr. Berger, he was always so supportive. That is a subject for another day.

By the time she was about 6 months old it was apparent that things weren’t going quite as well as we had hoped, but with a referral for Early Intervention Services, all things still seemed possible. More forms! All those questions about birth weight, length, my pregnancy, apgar scores, milestones, likes, dislikes, etc, were answered in my best handwriting. Then there were the “intake interviews” where you get to sit there with your child talking to the staff of therapists, nurse and social worker and answer all the questions again in person. Fun! As things went along and we found out about different assistance programs, (known in the political arena as “entitlement” programs), there were more forms! These generally included requests for financial information. As if it’s not enough to constantly report your child’s shortcomings, now you have to look at your tax forms. I was (and still am) always torn between hoping we qualified and being afraid we’d qualify. It’s a double edged sword.

Of course, I would be remiss if I didn’t mention insurance forms. They’re fun, too, but in a different way. They don’t usually need much detailed information, but every now and then they want to be sure that our daughter is still disabled. I wish they would have just looked up Aicardi Syndrome, but I suppose they have a policy or something about checking to make sure they’re not being scammed.

When Hillary turned 3 it was time to get her into the local school district. Yay! More forms and another round of interviews with social worker, therapists, teachers, and learning specialist where we went over the same information again and again. Then we had to look at programs, and once we decided where we wanted Hillary to go there were forms from that school. And so it continues.

Lately we’ve been applying for programs available to our daughter once she turned 18, and taking her to a new doctor and wheelchair clinic. I confess that sometimes when I’m filling out forms it’s late in the day (evening) and I’m a bit punchy. So it was that by the time I started filling out the doctor’s form I was not in the proper frame of mind. Questions such as: “Were there problems during your pregnancy?” and “When did your child first roll over?” just about did me in, and when I saw the one asking for her apgar scores I kind of went crazy and wrote the first thing that came to mind which was “I don’t remember, it was almost 20 years ago!” And honestly at this point I don’t believe it matters. It doesn’t matter now why Hillary is the way she is. Just treat the current problem and be done with it. I do understand that the doctors need this information in the interest of science and not missing anything, but for this parent the point is moot.

So that’s the latest thing about being the parent of a special needs child that’s bugging me. I wonder, why can’t they just have one universal form that I could fill out once, update occasionally, and e-mail to the doctor or agency that needs it? It would save me from being hit in the stomach with everything she is not. I prefer to focus on who she is

Thursday, July 14, 2011

New Shoes

     It is undeniable that a new pair of shoes can make you feel different.  There's something about slipping your feet into great new sneakers, sandals, or heels that is an instant pick-me-up.  Many women go out shoe shopping when they are feeling a little down in the dumps.  Some go out and spend an afternon trying shoes on even if they're not going to buy any.
     I tried recently to get some opinions on this subject by posting a question on Face Book.  I asked, "How does a new pair of shoes make you feel?"  It was an unscientific study and one to which out of about 50 possible responses I received two.  One respondent said, "I like anything new."  That didn't really answer the question.  The other respondent posted some of the lyrics of a song from the movie My Fair Lady:  "I feel pretty, oh so pretty, so pretty and witty and fine" with a smiley emoticon at the end.  At least that response told me something.  Obviously I can conclude that at least one of my friends feels a lightening of mood when wearing something new on her feet.
     Having recently purchased several pair of new summer shoes, and having mentioned it in a Face Book status, it was no surprise that the friend who responded with song lyrics requested that I wear a pair of the new footwear to breakfast.  I told her that I would wear the cutest pair, to which she replied that she'd look at everyone's feet and know I'd gotten there when she saw them.  Of course she loved the blue-and-white-checkered flats with bows on the toes.  By the time I got around to doing anything on the computer later that day she had posted a comment about the shoes.  Several of my friends then wrote requests to see the shoes,
begging for a picture.  Being in a quirky frame of mind I took a picture or two of the now famous flats, uploaded them, and made one of them my profile picture for a day.  What a buzz over footwear!  My friends were enthusiastic in their praise and admiration.  Obviously we are a group with too much time on our hands, either that or we are all in need of somethings non-stressful to occupy our minds for a bit.
     Who knew that my choice when I went shopping would brighten the day of so many? I don't generally think too much about what's on my feet.  Sometimes,though, when the right footwear calls I must listen.  Especially when they're the cutest pair of shoes ever.

Sunday, July 10, 2011

Sunday Evening Thoughts

*When someone asks me "Am I right?" after they tell me of something they did or said, they probably already know the answer.
*There cannot be many better things than to be driving on a sunny summer day with the window down and your hand playing with the wind as you speed down a country road.
*What kids want most from adults is time.
*Just when I thought I'd left middle/high school behind someone reminds me that some people have never left that phase of life and want to pull those of us who have left back in.
*It is a beautiful thing to watch a doe with her fawn just before dusk.
*There are many types of tired but the best kind is from having spent the day with family having fun.
*Spending the afternoon with family at their house playing games and eating good food leaves you feeling as if you'd had a mini vacation.
*Pleasant weekends are the best reason to keep going the rest of the week.
*It's easy to lose track of what day it is during the summer.

Wednesday, July 6, 2011

Time Flies

Where has June gone? Seems like just last week was Memorial Day and now here we are and Independence Day is just a memory! School has ended and I'm just beginning the time warp that is summer. Nice weather constantly beckons me to forget about the overflowing closets, the dust, lint, and piles of laundry. The chair on the deck calls my name, tells me to ignore the cries from the carpets & tiles that need cleaning in order that I may enjoy its view of the sky and trees. The sun fills the window and orders me to bask in it, walk in it, do anything in it. Flowers wink and smile, encouraging me to join them, give them a drink, inhale their sweet fragrance, and watch as bees, butterflies and hummingbirds visit. Spiders show off their web spinning talents to me, daring me to tear them down so they can begin again with great energy in juxtaposition to my lazy wanderings around the yard. Even the jet planes that slide silvery so far overhead call out for my attention as they appear in relief against the deep blue summer sky and play hide and seek in the fair weather clouds. The patio cries out to remind me how much I missed it when it was buried under winter's snows. So I give in, to the detriment of the inside of my house. Soon enough it will be over, Labor Day will have come & gone and school will be back in session and so I will be back at work. Then I'll be asking: where did the summer go?

Thursday, June 30, 2011

About Miracles

When Hillary was still an infant and I told people that she was always going to have seizures and be severely delayed in her development, many would advise me not to give up hope and to pray because miracles happen. Somehow, that didn’t seem quite right to me. To me a miracle is most commonly not an Earth shattering, big bang, knock your socks off type of event. For me they are present every day. Some days it is a wonder that I have survived without alienating everyone in my personal universe. Some days it’s that Hillary laughed appropriately at something. Sometimes the right person speaks to me at the right time and makes things go smoothly. The phenomenon of Hillary being like all the typically developing children her age will not be happening.

Coming to acceptance of this was not an overnight process. It took someone inadvertently hitting me over the head with reality to open my eyes. Something such as at 18 months looking at “special strollers” (a.k.a. small stroller-like wheelchairs) with a very enthusiastic physical therapist who was non-plussed by my lack of enthusiasm. I recall asking her how long Hillary was going to need it. Looking back on that I do a mental head slap and a “well duh!” The obvious answer of “until she outgrows it and needs a bigger one” was not something I was willing to entertain at that point. It is a miracle that we were able to fairly quickly accept that particular reality and act upon it for Hillary’s benefit. She is currently in her fourth chair, and we are looking forward to perhaps ordering her fifth soon. Miraculous that we can be “looking forward” to that.

It was amazing to me over ten years ago that we were able to see Anna and Hillary on the same stage together in the chorus. Never had we imagined that would happen when we realized the scope of Hillary’s delays. How could someone who can’t do more than make the most infantile sounds participate in chorus? Due to an open minded and creative chorus teacher adding some small rhythm instruments to the chorus, our daughters were able to engage in the same activity with a group of their peers. Upon that foundation the community built a level of acceptance many parents of children with special needs only dream about. Hillary went on to join a scout troop in town, participate in as many activities as possible on her own terms, “graduate” to adult scout with the rest of her troop, and go on a cruise as the final troop activity. Currently Hillary is attending our high school in town, and is enjoying the experience immensely. I could never have dared dream that any of this would be so. I thought that she would forever be segregated from the non-disabled community both by the severity of her disability and the attitudes of those in charge. Miraculously we have found the opposite to be true.

I don’t know who to credit with the success of our efforts to give Hillary as normal a life experience as possible. It seems likely that we all have played a part. Maybe when we were trying to ask for the miracle of Hillary being “normal”, we were really praying for her to be accepted as she is. Miracles do happen.

Thursday, June 16, 2011


I freely admit that I have an addiction. I’m addicted to NCIS. I love that show, and watch it as often as possible. Never mind that I’ve seen the reruns umpteen times, I still watch them. No program has ever held me this captive before, although As the World Turns came close. So I wondered what it is about these shows that keeps me coming back time and again.
I know that the writing is excellent on this show. Interesting stories with just enough clues and plot twists to keep me engaged. But it’s more than that. I love the characters and how they relate to each other. Relationships are important in life, and apparently in TV shows as well. Come to think of it, the books that I like to read over and over are ones in which the interactions of the characters are part of the central theme. Take my all time favorite book, Little Women. I have read that book countless times and never tire of it. The way the sisters interact with each other, their parents and the other characters is what makes the book such a good read.
And so it is, too, that when I think of the times in life when I have had the best time it is the relationships with others that stick out. A group of people, who have mutual respect for each other, and are willing to forgive each other’s mistakes and quirks is what being human is all about. Whether it’s family, friends, or coworkers, when everyone is mostly respectful of each other it just makes things pleasant.
Perhaps what I am really addicted to is the feeling that good relationships give me. Whether I am watching NCIS, reading, or participating in respectful relationships it makes me feel good. What a good addiction to have!

Wednesday, May 25, 2011

The Best Hat

I studied my daughter as we sat on the back seat of the van together on the way home from college graduation. What I saw was a combination of who she is, who she was, and who she may become. All of these images superimposed one on top of the other, changing constantly under the black mortarboard she wore on her head. She had taken off the black gown and red stole, but left the hat with its two tassels on her head.
In reverie as my husband navigated through the heavy traffic I remembered all the different hats my daughter had worn during the different stages of her young life. The first one that came to mind was the knitted pastel hat my mother made for my firstborn before we knew if she would be a boy or a girl, followed by the white cotton baby hat suitable for keeping the sun off a newborn’s face in the summer. As babies do, she kept trying to pull the hat off. These memories were followed by a myriad of Easter bonnets and straw hats, some of which matched dresses and were accompanied by lace gloves and white shoes. A pink baseball cap floated through my semi conscious ponderings. Toddler to preschool years were the years of the pink cap that helped her relate to her daddy. Knitted winter hats and hoods in many colors passed through my daydream in various sizes and shapes. The Girl Scout years saw the proliferation of visors when any hat was worn at all. Once high school came around, the primary hat was the band hat. Not terribly fashionable, worn reluctantly but with pride.
So it was that as we progressed toward our celebratory lunch that I commented on her head covering, saying, “I’ve never seen you wear a hat for such a long time before. I thought you didn’t like hats.” She didn’t look at me when she answered, but I loved the words when she softly said, “I love this hat.” I thought for a moment as I studied the glowing face beneath the black square with its black and gold tassels, the gold one denoting cum laude status. I smiled and said, “Well, it’s a good hat to love.”

Tuesday, May 24, 2011

Spots on My Specs

There are spots on my eyeglasses and they tell the story of my day. The smudge on the left lens is where my daughter's elbow got me this morning when I was wrestling her out of bed and into her wheelchair. There's a smaller smudge on the right lens near the top edge from the butter I put on my toast for breakfast. The little spots pretty much all over both lenses are from work, where first the macaroni water splashed when I was draining it to make the gallons of macaroni salad for the salad bar, and the dishwater that got me when I dropped a bowl into the sink during clean up. A bit of lint seems to be clinging in tiny particles all over from the dryer when I took the sheets out this afternoon, and some soy sauce from dinner seems to have found its way onto them as well. The final smudge is from my husband's nose when he kissed me before leaving for band rehearsal. I should have cleaned them before I sat down at the computer, but really, how would I have remembered everything about my day if I had done that? I'll clean them before I go to bed, and start a new history tomorrow.

Saturday, May 7, 2011

About Mothers

About mothers. We all have them, most of us are them. We are all influenced by them. Some of us have had more than one mother figure in our lives. Their words come back to us, sometimes at the right moment to help us, sometimes at the wrong moment to temper our joy with words of caution. Most mothers mean well, and they do the best they can with what they have and who they are. Sometimes we just don’t know what the right thing to do or say is, but we don’t want to let on! Aren’t we supposed to have all the answers and know everything? Protection of our babies (no matter how old they are!) and their happiness is a driving force for us. Sometimes we want so badly for them to be happy that we lose sight of the fact that we all need to be unhappy sometimes. How else will we appreciate happiness if we are occasionally not? Even though we hate to see our children unhappy, we must allow them to have their struggles, make mistakes, fall and get up on their own. Among the most difficult things for a mother to do is standing by and watch things go as they will without interference. We all had to figure life out as we went along, and of course we have the desire to spare our children the pain of failure, but if our mothers had stepped in all the time we would not have learned all we needed to know to survive all that life throws at us. The best gift my mother gave me was the ability to be independent, to think, assess and act to resolve problems in my own way. Without being able to practice those skills as I grew into adulthood, I can’t imagine how I would have made it this far in life. Thanks Mom!

Thursday, May 5, 2011

Joy List

Just a list of simple things that bring me joy:

A deep green hillside dotted with bright yellow dandelions.

The way the air smells in spring when the sun comes out after a rainy day.

Window curtains fluttering in the breeze in the evening.

The morning sun reflecting off the newly cleaned kitchen floor.

The sound of the birds chirping through the open window on a Saturday morning as I'm lying in bed.

The way the setting sun lights the underside of the branches of the tall, tall trees across the street.

The morning or evening sky colored like cotton candy swirls.

Puffy white clouds against a robin's egg blue sky.

Watching little birds eating seeds left on the plants from last year.

Perennials when they begin breaking through the ground in Spring.

My corner of the couch.

The crocheted afghan that I made for my mother-in-law and got back after she passed away.

Pictures of my girls and husband.

Chopping vegetables for dinner.

A cup of tea.

Thursday, March 31, 2011

It Started With Salad

I had a conversation the other day at work that left me feeling sad, angry and frustrated. I work in a high school kitchen/cafeteria and we were discussing a problem with the self serve salad bar. It seems as if there are a handful of people who take much more than their share, leaving little for those who come after. The solution was a compromise that nobody is that thrilled with, and it sent the conversation in a new direction; who is to blame. The first group mentioned by some co-workers were the special needs students. I pointed out that it is not only those students, and that many of them don’t know any better. The looks I got were hostile, as was the tone of voice used to ask me where the aides were that are supposed to be with the students. Obviously I don’t know, but my guess would be that since the students in question are able enough to do some things independently, they are sent as a group to lunch a few minutes before the general population of the school. As the discussion progressed, it became clear to me that there is still much prejudice against the developmentally delayed population in general. With all the strides forward that have been made in the past 50 years or so in regards to how well those with mental difficulties are assimilated into society, there are too many people who believe they have no business in the general population and should be separated, kept together with those who are similar. As the mother of a child who has many severe disabilities this was most upsetting. Not surprising, but upsetting nonetheless. It is an uphill battle we fight to encourage people to understand that when you segregate those who are different, you create more problems than you solve in the long run. As sure as the sun rises daily, the children who have special needs grow up, graduate, and need to have a safe place to go daily. Many can work with the proper supports, but some cannot. As the children age, so do their parents. Most will outlive their parents, for the cruel irony is that life expectancies are frequently not affected by whatever is different with the brains of those in need of constant supervision and care. There are group homes, and daycares, and even some jobs available but not enough of any of these, and not enough funding for meeting even the needs of many. What could be sadder than an elderly mother still caring for her middle aged offspring whose developmental age is perhaps 5 years old on a good day? What is to become of that adult child when the parent passes on? Clearly this is going to create an emergency situation for placement, when it would have been much better to have made sure that there was a safe place for them to live when they were a young adult and the parent was able to really help with the transition. Of course it would be hard on both the parent and the child to separate. If done when both are in good health and able to cope, with the right supports, this is a problem that can be fixed. When adults do not understand that the attitudes they display are going to affect society for years to come, in ways they cannot imagine, societal problems do not get better.

Saturday, March 12, 2011

Happy Anniversary

He went into the same doughnut shop every morning around 4 a.m. on his way to his truck driving job. The same girl was there every day and after a time she knew his order and had it waiting on the counter when he arrived. They began dating and she was moved to the afternoon shift. He stopped in every day and once a week brought her a single rosebud in a white vase. He gave her a diamond ring in the parking lot. They were married on a day when it snowed, sleeted and rained. They honeymooned in Atlantic City, and set up housekeeping in the apartment he had lived in alone.

Fast forward 28 years, they exchange cards and kisses, she cooks him breakfast in the kitchen of the only house they ever owned and he buys her doughnuts from the shop where they met. They spend the day quietly together, doing household tasks, spending time with their daughters, watching tv, napping, and capping it off with a dinner out. It is a good day, satisfying in its quietude and companionship. It is the best wedding anniversary ever for it suits them and their love which is quiet and steady, the kind that lasts forever.

Monday, February 28, 2011

Ok, so maybe I had too much cake today! Happy Birthday to me!

Birthday Cake

You loved me at first sight,
Anticipating my sweetness,
How satisfying I would be,
Welcomed me to the celebration,
The others sang to me,
Illuminated me,
You smiled and breathed on me,
Then things turned,
The knife slicing me,
Dissecting me,
Ice cream cold on me,
Forks digging into my tenderness,
I hope it was worth it,
I was your birthday cake.

Tuesday, February 1, 2011


The recent passing of a childhood friend’s father had me remembering my own dad, who moved to Heaven in 1997. The earliest memory I have of my dad is of him reading to me. I can picture the book, a collection of fairy tales and fables which had a beige hardcover with red lettering. One of my favorites was “The Brementown Musicians”. I can see in my mind’s eye an illustration of the animals in the story all standing on each other’s backs looking into a window. It is, however, when I think of the story of the three little pigs that I can hear Dad’s voice when the wolf is huffing and puffing and blowing the houses down. There was nothing better as a young child than sitting on Dad’s lap listening to a story. This is perhaps where my love of reading comes from, as well as my love of telling a tale.

Dad was a hard working, soft spoken, gentle man with a quick mind and dry wit. For as long as I can remember he worked 12 hours a day, 6 or 7 days a week. When he wasn’t working he was fixing something around the house or on the car, or tinkering around in the basement. He could fix a radio or tv, a toaster, a mixer, even on occasion a vacuum cleaner, and he seemed happy doing it. Although he didn’t graduate from school, he was intelligent and inquisitive, reading books, magazines and newspapers daily. He was as quick with a supportive word as he was with an amusing comment. The best person to sit near at a family reunion was Dad, as he was constantly murmuring comments about the relatives and the conversation. Things that might not be something he’d want anyone involved to hear, but amusing just the same. That same quirky, dry sense of humor lives on in me, although I tend to keep the comments to myself rather than risk saying something that causes hard feelings or an argument. One demonstration of Dad’s sense of humor is evident when I think of some of the television shows he enjoyed. Although I didn’t care for Benny Hill, the program made him roar with laughter as did Monty Python’s Flying Circus. I recall my father and brothers all watching those shows, especially the latter, all together. I guess it’s a guy thing. My husband enjoys that type of humor as well.

It was through my husband that I gained a deeper understanding of my father. Dad was able to help my husband get a job at the same factory where he worked, and so I got to hear stories of how my father interacted with his fellow workers. One of my favorite stories is how Dad and one of his friends used to wish each other happy groundhog’s day every February 2nd. I’m not sure what they found so amusing about it, perhaps there was some joke the two of them shared. I could ask his friend or my husband, but some things I don’t need to know. It made him happy, so I’d just like to say “hey Dad, happy groundhog’s day!”

Friday, January 28, 2011

I Miss My Patio

As I was shoveling the snow off my back deck this afternoon when I got home from work my mind was wandering. Warm sunshine, green leaves, butterflies, a comfy glider were the things I was thinking about. When the weather turns warmer these are the things I enjoy after work along with either a cup of coffee or glass of iced tea. There on my patio is where I transition from work me to home me. Shoveling snow doesn’t do it quite as well. I miss my patio. In the winter it is covered with snow, there are no flowers or leaves, no butterflies, no glider to relax on. I can’t even sit on the small retaining wall at the edge because it’s buried beneath the frozen white.

My warm weather life revolves around the patio. In the corner where the forsythia hangs a bit low is where I hang a spinner for Hillary to enjoy. She so loves to look at the leaves fluttering in the breeze while the shiny spinner reacts to the moving air. In the spring before the leaves appear it is a nice sunny spot to enjoy some air after a day spent inside. Once the buds open up and the air is warmer the same spot is shady until nearly dinner time. It is such a pleasant spot to be. When Anna was in high school it is where we met once she was home to talk about her day, her worries, or simply to sit side by side on the glider sipping something cold, eating pretzels and reading. When Bruce gets home from work he joins us, relaxing in the Adirondack chair for a bit before going inside to watch the news.

The patio symbolizes a more relaxing rhythm of days, there is just as much to be done yet time seems to be moving at a slower, much easier pace. It means salads and lighting the grill to cook an easy dinner, open windows, curtains fluttering in the afternoon breeze, and waiting to see if the hummingbirds will visit the flowers in the hanging baskets. It is currently snowing again, however, so I’ll have to content myself with watching the winter birds and squirrels at the bird feeder through the window, my favorite blanket, and endless cups of tea. I really miss my patio.

Thursday, January 13, 2011


I've learned that :

wheelchairs don't go well in snowy parking lots.
people can make a really big deal out of nothing.
many people don't know how to deal with life when there is nobody else to blame.
most of those pointing at someone else are really just trying to stop people from paying attention to them.
sometimes you get what you want.
sometimes you get what you need.
sometimes you get what you get.
cookies' calories increase when used to dull worries.
a pot of soup can be stretched to feed many people multiple days.
I don't like to share chocolates.
chicken nuggets are heavenly dipped in nacho cheese sauce.
a bowl of cereal is a lovely way to end the day.
a cold cloth on the head soothes a headache nicely.
much reality tv does not resemble reality, & none of it resembles my life.
sometimes I don't know when to stop

Saturday, January 8, 2011

New Year, New View

The new year gives us a chance to look at our lives from a new point of view. We are, of course, free at any time to view things differently. A brand new calendar just gives us an easy starting point. With this in mind I try to look at all that I must do daily with an alternate perspective, and examine a bit my motivations for the choices I make.

The biggest part of my days are spent caring for Hillary, both physically and mentally. One of my main goals for her has always been to give her the best quality, most meaningful life I can for as long as she is with us. I’ve always felt that it was my job to help her live in our world because we cannot live in hers. What if this year I tried to get others to visit her world instead? Maybe that’s a more appropriate goal now. There are laws and policies in place to ensure that she has the opportunity to participate in our world to the extent that her abilities allow, and that’s good. I think that the next logical step is to invite others to visit her world for a while, so they can gain an understanding of how to further include her in the world at large. Isn’t it similar to visiting another culture? How can we understand what another way of life is like if we don’t visit that world? I see it happening in her classroom with the Best Buddies club. Non disabled peers visit the classroom as well as hosting different events after school hours. When all are able to participate in activities that they all enjoy it fosters a level of understanding that reading or talking about inclusion doesn’t come close to. When people with differing abilities can work together, everyone grows a little. Someone without disabilities can look to the peer who has disabilities and see determination to achieve that they may not see or pay attention to in their peers who have no challenges. The person who has disabilities can feel accepted, and try to model the peer’s positive behavior.

The question then is how am I going to do this? I can start, perhaps, by seeking places where there are opportunities for some one on one time with new people. We do take Hillary out quite a bit, but perhaps I can look for new places to go. I can also try inviting more people to our home to spend some time with Hillary. This will be an exciting opportunity for both Hillary and I to broaden our horizons and expand our connections. Good goals for the new year.

Sunday, January 2, 2011

My Bad Hair Life

I wanted to write something about the new year for my first blog post of 2011, but all I can think about is my hair, and I’ve come to a conclusion. I’m having a bad hair life. I know, most people just have the occasional bad hair day, but I seem to find that I have occasional GOOD hair days among the nearly constant bad hair days, and yes, I know that there are those with no hair who would love to have these problems. This thought stream got me to wondering how I ended up having a bad hair life.

As far back as I can remember, my hair has been the focus of conversation. I recall relatives commenting on the thickness of my hair when I was quite young. My mother gave me a home perm a few times a year. I slept in curlers for a good part of my childhood, and I can vividly recall spending time under a home hair dryer before blow dryers were widely available. My mother used to clean a beauty salon in town in exchange for getting her hair done weekly and I went with her many times. The owner very kindly allowed me to try on the wigs displayed in the window. What fun that was! My favorite was a very long platinum blonde wig. Which is ironic because if I stopped coloring my hair now it would be about the same color except it’d be called gray. Of course, my hair isn’t long either. But I digress. I loved my first blow-dryer, the “maxi”. I remember the ad in a teen magazine for it that I saw: 2 pictures of the same model, one with her hair a wet wild mess, the second with her hair beautifully styled with the caption “8:00 wet & wild, 8:07 dry & styled!” Somehow, no matter how hard I tried I never quite achieved that whole 7 minute dry & styled thing. Dry, yes, but not in 7 minutes, and as for styled? Well, thankfully they also had curling irons on the market at the same time because I needed one of them along with lots of hairspray. I even let my mother talk me into a “pixie” cut one year. Well, at least I blended in with my brothers--except of course for the girl’s clothes! Note to self: a pixie cut does not look like such if your hair is not stick straight and thin. Thick, wavy, coarse hair is not a good thing with a super short cut. At least I wasn’t getting home perms any more by that time. Next came the “pageboy” cut. That actually didn’t look that bad but oh boy was it a lot of work to get it to look right. It was at this stage that having “Farrah” hair was the rage. Thank the Lord that I was old enough to realize that I was not ever going to have that hair!
Once I became a young adult, I took to getting perms again, only this time I went to a salon. I loved the freedom of wash ‘n’ go hair that a perm gave me, but my hair grows very fast so it was really only easy for about 4 weeks or so. Then I was back to the whole hair dryer/curling iron routine every morning. I continued fluctuating between a non-permed pageboy and permed layered freedom for a few years, until my second child came along. When she was about 9 months old I marched into a salon and asked the girl to give me a very short cut. She questioned me a lot before she took the scissors to my hair, but she finally obliged. At least now it was quicker to style, but until that point I hadn’t realized how much gray was mixed into the brown. A new chapter was about to begin. Hair dye.

It was an incident at church that precipitated my enslavement to the color bottle. I was sitting in the pew after the service with my baby in my arms and my preschooler next to me waiting for my husband, who had sung with the choir, when the older woman who had been sitting in front of me turned and said, “Your grandchildren are very well behaved.” Need I explain further? Since then I have done everything from keeping my natural color going to being blonde. One thing I haven’t done is stop coloring. For some reason, it is more socially acceptable to walk around with a bad dye job and/or white roots than it is to be gray. About a year ago I mentioned to a few friends that I was tired of coloring my hair and wondered if I should just go ahead and go gray? Shock and dismay is the only way I can describe the reactions I got.

So, I shall continue fighting with my hair, blowing, coating, and spraying it into submission daily. Welcome to my bad hair life, and happy New Year. Have a great 2011!