Was Someone Staring?

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

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

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

Changing the World

“A teacher effects eternity; he can never tell where his influence stops” –Henry Adams

“I will let the facts speak for themselves” Demosthenes

 

These two quotes feel relevant to me just now.  There have been some things going on in my daughter’s school days that I found it necessary to address.  I tend to be pretty easy going about things, trying to see all sides and hanging back, letting Hillary meet the world on her own terms and the staff who work with her handle challenges that come up with the rest of the school.  I frequently think that she is here to teach more than she is to be taught, but we must work within the public school system and they (administrators & law makers) don’t get that poetic idea.  So when Hillary is mainstreamed into a general education class, I take a back seat and let things work themselves out, and for the most part it’s been good all these years.  This year, for the first time ever, I had to step in and protest.  I’ve protested things before, but never a situation like this.  The chorus teacher kept asking her aide to take her out of the class because she was making noise while they were singing.  She was participating to the best of her ability and enjoying the music and being with her peers.  I had no choice, I had to step in with an e-mail to her teachers and administrators of the school.  Multiple recipients brings the fastest action.  There was a prompt response and I think things are getting better.  I think I am most disappointed that this teacher, instead of using the situation to model acceptance to the rest of the students, chose to model intolerance for those who are different.  How unforgivable.  I believe that Hillary’s peers are the future teachers, doctors, lawyers, nurses, and policy makers, as well as caregivers and members of society.  If what they see as acceptable is intolerance and disrespect for differences there is not much chance things will change for the better.  Any one of us could suffer an accident or health emergency which leaves us with disabilities.  We need to know that those who will be caring for us and our loved ones have respect for and tolerance of our different abilities and disabilities.  Certainly I cannot force this man to embrace the chance to work with someone like my daughter, but he must obey the law which says she has a legal right to be there, and he must show her respect and sensitivity for her feelings as a fellow human being at the very least.  I may not be able to change the whole world, but I hope that I can help positive change happen in the future.

Ha! New Year!

After a very nice but busy holiday season I started the New Year 2013 at a run.  Work, doctor appointments, and packing away Christmas all take up the scant time each day contains.  Add in a cold for my husband and I both, then throw in a problem with one of Hillary’s teachers, a tragedy in our town, and a major health problem for my supervisor, and it doesn’t feel as if much has changed with the new calendar.  There are always going to be “things to deal with” because that’s how life is.  Something is always happening to keep you off balance, keep you thinking, growing, solving problems.  At the end of last October we went to a birthday party for a friend.  As we were saying our good-byes at the end, the birthday party honoree thanked us for coming adding, “I really appreciate it, I know you have troubles.”  I know he meant it kindly, but it got me to thinking.  Is that how people see us, as having troubles because we have Hillary?  I just look at it as having a life to live.  Who among us doesn’t have something that could be seen as “troubles” by someone not experiencing the same thing?  I don’t know, it just struck me as something worth mentioning.  I guess it’s all in the attitude you have toward life in general whether you  have trouble in your life, or a life that challenges you.  My life is full, and my life challenges me—it is that which keeps me growing and moving forward, and I expect I will grow much and go far in this new year.  I hope you also meet your challenges with the expectation of growing and moving forward in 2013.

When I Grow Up I Want To Be Normal

My earliest recollection of what I want to be when I grow up is from second grade. Miss Hersh, who was very young and we all thought she was so pretty, had us write a story about what we wanted to be when we grow up. I wrote that I wanted to teach the deaf. I have no idea where that came from at the tender age of seven. Since then I changed my goal time after time. At one point I wanted to be Mary Richards, played by Mary Tyler Moore. She lived in a cool apartment, had a cool job at a radio station, and come to think of it she looked a bit like Miss Hersh. Some of my other goals were court reporter, artist, writer, secretary, baker, restaurant manager, wife, and mother. I’ve done four of those, and have one as a hobby (you’re reading the result of it right now!). What I’ve come to realize is that my ultimate goal has always been to be normal.


I guess I never felt normal. We lived in a tiny house in which besides my mother I was the only female among three brothers and a father. Then there’s the whole leap year birthday thing. I only ever knew two other people with that birthday, a boy named Dennis and a girl named Cindy who were both in my grade. Following two brass playing older brothers, I was expected to play brass also so I played the French horn, but my friends all played flutes or clarinets. None of that made me feel normal. I never took swim lessons, but all my friends did and I still don’t know how to swim. Don’t get me wrong, I had a happy childhood and young adulthood so I’m not complaining.

Fast forward to Hillary’s diagnosis when she was 4 months old. In the ensuing years I felt even less normal than ever before. It was as if someone had stripped me of my clothes, painted me fluorescent orange, put me on roller skates and pushed me into the middle of the rink. I knew nobody who had to deal with the issues I was dealing with, even when we went to parent support groups. Having the kid with the most disabilities and challenges is a lonely place to be. When other parents were lamenting the extended time before their child moved from crawling to walking, I was hoping that one day mine would hold her head up without support. What I began to understand, however, was that feelings are the same no matter what the challenge is. That is how I connected with other parents of children with special needs.

Now I understand that being normal isn’t what you do or what your circumstances are. Being normal is facing struggles, over coming obstacles, laughing, crying, talking, praying, yelling, whispering and having feelings. Normal is frustration, elation, and neutrality. So apparently I’ve finally grown up. I am unique, but I am normal.

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.

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.

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.

Don't Ask For A Milkshake

It’s been a running joke with my family for the past 18 years or so. Don’t ask for a milkshake, you never know what will be in it. It all started out of my desperation to feed my youngest and avoid a feeding tube.

When Hillary was old enough to be given soft baby foods, she simply would not eat. Anything. She would drink anything, but put a spoon to her lips and she would retch and/or vomit. It was pretty gross, pretty frustrating, and pretty unhealthy for her. Between her seizures and the myriad of medications she was (and still is) on it was quite a challenge. I was determined that I would not deal with a feeding tube any sooner than I had to. It was discussed with the doctor, but I REALLY didn’t want to do that. Real food is better for the digestive system anyhow, so I pureed regular food and put it all in milkshakes. I had other parents tell me how gross that was and advise me to put her on some type of formula, but, as my older daughter observes, I don’t do beginner level. Ever. I tasted all of the shakes to make sure they didn’t taste as yucky as others thought they sounded like they would be. Chicken, sweet potatoes, a vanilla instant breakfast and milk actually wasn’t bad. Chocolate & peanut butter were good for making beef and peas palatable. The texture was just a tad grainy for me, but the flavor really wasn’t bad, and we got by that way for a year or so and then I was able to introduce the spoon again with the help of a speech therapist. Eventually, of course, we had no choice but to have a feeding tube placed in her abdomen and supplement her diet with formula. My bottom line is always to keep her healthy, but avoiding the inevitable for so long allowed me to form a nice relationship with her. Meal times are social times and I can’t imagine not having had that time to bond normally with someone who has many differences.

I no longer make those milkshakes, but my reputation lives on; at least in the minds of my family. How interesting that we no longer have a blender in the house. I wonder if they’d give me one for Christmas?

Best Buddies

After having run around like a crazy person for 5 hours preparing food, setting up, and selling lunch & snacks to high school kids, it was time to visit my daughter's classroom. My younger daughter has multiple disabilities. They had a "Best Buddies" Thanksgiving feast &; invited parents for dessert. For those of you not familiar with the "Best Buddies" program, it is a national program set up to partner developmentally disabled teenagers with non disabled peers. This is my daughter's first year at high school and with this program. The room was crowded and noisy with the chattering of at least 40 kids and adults, all of whom had partaken in the feast. It was a happy place to spend an hour. You cannot fathom the happiness of developmentally disabled kids when they have a chance to form friendships with their peers. These are the types of programs that will eventually change societal opinions and the way that the developmentally disabled are treated. When kids grow up learning to respect and value those with disabilities, they become adults who don't find it odd to include them. Our future policy makers, volunteers, scientists, and teachers may make better decisions that affect all of us if they see from their earliest school days that EVERYONE is valuable and deserves to be included in daily life.

BEADS

The beads, the beads,
Thank God for the beads!
Shiny and smooth
Cool to the touch
Make a gentle noise
When not moved too much.
But just get them going
A hand's all it takes
And KLACKETY KLACK!!
Is the noise that they make.
Sometimes they're so loud
I can hear them outside.
They make her so happy,
She smiles and she coos
They get her excited--
She yells in that mood.
Sometimes she just sits there
And stares at them quiet.
Then she gets going--
It sounds like a riot!
And when in the evening
We put them to bed,
She follows them longingly,
Turning her head.
Then there's a sigh as away she goes
Off to her nest to snooze and to doze.

Freedoms

Freedoms taken for granted. What freedoms do each of us take for granted? This thought occurred to me while walking to the ladies’ room in Macy’s. I was out with my sister-in-law Laura, Hillary and Anna. Usually I’m out with Hillary alone and a trip to the ladies’ room is inconvenient at best. I appreciated the chance to have the freedom to go alone. It got me thinking about the freedoms that we all may take for granted that others might give their eyeteeth to have.
I enjoy the freedom to go places alone with Hillary due to the wheelchair accessible van that we have. Even when I’m cursing about the malfunctioning door on the ten-year-old vehicle, I’m aware that it has served me well. It has given our family the freedom to go wherever we desired or needed to. I’m thankful for that. It’s partly because we have the van we’ve been able to lead as normal an existence as most families in our community. I cannot imagine life without going shopping, visiting family, and keeping appointments needing only to strap the wheelchair into the van and go. Sometimes I take this freedom for granted, forgetting that not everyone is as fortunate. Some people must move their family member from the wheelchair, into a car seat, back into the wheelchair upon reaching their destination. Even more restrictive is having no way to travel with a family member who has physical disabilities.
I have a friend who has an eighteen-year-old daughter who has multiple disabilities. She is a delightful child, but cannot be left alone. Every summer her daughter goes to sleep away camp for 6 weeks or so. During this time, my friend is able to enjoy a freedom that most of her friends take for granted. The freedom to come and go as she pleases, or participate in activities her daughter cannot, without having to make sure there is someone to care for her. She takes full advantage of this freedom because for the rest of the year she is tied to the schedule of her daughter’s school, activities and needs.
I have another friend whose daughter passed away a few years ago. She has more freedom now than ever, yet she would give it up in a second to have her child back. She yearns to have the freedom to hug her little girl whenever she feels like it, but never again will she have this. Do I take for granted the freedom to hug Hillary as much as I wish? Yes, sometimes I do. I think it’s human to take for granted what we have around us every day thinking that all the world is the same as it is for us, forgetting that somewhere there is someone who would love to be in our shoes.

I Am Not Always Gracious

I’m not always gracious. I suppose that many people are that way, but they aren’t me. I try to be as gracious as possible when someone is going out of their way to help me. Sometimes the help goes awry, and turns annoying or into an outright inconvenience. When I’m feeling especially stressed out I have a really hard time mustering the patience that graciousness requires.
I’m currently experiencing a hectic period of time in which I’m running from one thing to another, barely finding any time for myself. Now there’s a recipe for a patience shortage! Add in the fact that this hectic time is also emotionally stressful, and it’s the perfect combination for some ungraciousness. Last night Hillary graduated (after 9years) from our town’s middle school. This was a relatively last minute decision, and I‘ve decided that 6 weeks notice was not enough time for me to adequately deal with the thoughts and emotions such an event holds for this mother of a child with special needs. There are currently other situations in my life which I am stressing over, and this was just the icing on the cake. I’m not fond of a lot of “hoopla”, and large crowds of people have never really been my thing. So I was not looking forward to attending the graduation ceremony. I could have told the school that Hillary wasn’t going to participate in the ceremony, but is it really about what is easiest for me? Of course not. I have always just wanted to give Hillary as many “normal” experiences of life as possible, and graduation is part of that. Although I would have felt better not having to go, how could I deny Hillary that experience? Even though she was unhappy about all the preparations we had to do at home, she did seem to enjoy the experience: taking pictures, gifts, flowers in her hair, a special outfit, the gown, the processional, the speeches, the band, the applause and being with her peers in front of all the parents. I, however, failed to enjoy it. It was a lot more work for me to get her ready at a time of day when all I wanted to do was curl up on the couch with a book, my computer, and the tv remote. I got her ready, got myself together, and off we all went to the ceremony. I had been told by the school that we would have a parking spot reserved for us as well as 3 seats right up front in case we wanted to take Hillary home early. The parking spot was taken by someone else, and one of our chairs was missing. I’m afraid that even at this early stage my graciousness and patience were dangerously low, and I snarked at the man taking the tickets. This man was gracious enough to ignore my poor attitude and asked someone to get us another chair. I managed to get through the ceremony but the rudeness of the other parents really wore on my last sixteenth of a nerve that I have left to get through the month on. By the end of the whole thing I was cursing just above what would be considered under my breath, and barely managing not to shove people out of my way in order to exit the building to meet up with Hillary and her aide. Once outside, I couldn’t wait to get home, get Hillary in bed and then relax. I suppose that once some time has gone by and I can catch my breath I will be able to see how good this was for Hillary, and be glad that I did it. At some point in time I will be gracious enough to be thankful for all the extra effort put forth by the school personnel to include Hillary in such a way that she felt like part of something besides her family. Then, perhaps, I will rest easier in my mind.
***by Susan Donald

Despair in the Mail

There hasn't been much of this lately, but it is part of life. No matter if you have a special situation, or are just a "regular" person with a "regular" life, eventually something is mailed to you that makes you feel this way. Realizing the feelings of hopelessness are transient is the best way I have found to cope with them. This particular poem came about when we were trying to obtain funding for the patient lift system simultaneously with fighting with insurance for a new wheelchair. Feeling overwhelmed would be grossly understating my state of mind at that time. It was all hard work, and extremely stressful, but worth it to have what we need to properly care for Hillary.
***********************************************************************************

Open the envelope
Out jumps despair
Stomping and jumping,
Painting the heart
Putrid black
Inviting Hopelessness, Isolation, Apathy, Worthlessness
To join the party.
From under the wreckage
Out comes Resolve
Lighting the ember of Hope.
Despair exits
Taking the others
Out of Hope’s light
Back into the darkness.

A CONVOLUTED CADENCE

Strangers can make or break a day. An unkind word or action can be the defining moment of a bad day. On the flip side, and unexpected kind word or action can turn a bad day into a good one. Everyday errands can be good or bad depending on how strangers act.
We were a small percussion section. The sticking brake on the wheelchair clicking away and the thumpy rattle of the shopping cart as we made our way through the store was our convoluted cadence. Occasionally Hillary added her voice to the mix, just to keep it interesting, or maybe to warn the people coming out of the intersecting aisles. One of the challenging parts about shopping alone with Hillary is pushing all 230 pounds of girl and wheelchair with one hand and pulling the shopping cart behind with the other without running into other shoppers or displays, or knocking things off shelves by cutting corners too close with either piece of equipment. Trying to stop in time when someone stops suddenly in front of me adds challenge and interest. So far I haven't hit anyone. I have thought occasionally about putting spikes on the end of the footplates of the chair for those times when people just don't want to give an inch, but up to this point I've controlled myself. At times I have wished I had an air horn at my disposal for those talking on their cell phones, oblivious to other shoppers trying to navigate the merchandise. This particular day there was no temptation, it was Nice People Day. I love Nice People Day! The cashier helped unload my cart onto the belt without being asked. She was cheerful, effiecient, and used a minimum of bags. The day continued its pleasant theme when I exited the store as, amazingly, when I needed to cross the parking lot with my little caravan the traffic stopped to let us get off the curb and cross to our vehicle. Might sound like no big deal, but I assure you that it doesn't often happen and I sure do appreciate it when it does!
It is the simple things that strangers do that can sometimes either make or break my day, and this day they made it. Must have been the convoluted cadence was a happy one.

QUEEN

She's a queen who sits upon her throne
And utters not a word.
She looks at those around
As if they were all quite absurd.
The cook, she tries to tempt her
With the greatest of delights
But she simply turns her nose up
And coughs with all her might.
Her servants try to please her
And dress her in good taste
She doesn't like it much though
When they fix her hair with haste.
They do not understand her
When she tries to tell them "no"
So where they wish to take her
She must surely go.
Sometimes it is quite taxing
To be rushing here and there
So she simply tips her head down
And sleeps soundly in her chair.
She really is quite happy
To have a family
To share with her
And care for her for all the world to see.
Contentment could describe her
For her world is filled with love
And so she's found frequently
Cooing like a dove.
They love her beyond reason
This family of the queen
Regardless of the season
Together they'll be seen.

NOBODY IN THEIR RIGHT MIND

Nobody in their right mind would do this. That is what I say to myself every time I am trying to maneuver Hillary from her bed to the bath tub. The process involves first getting her into the sling, then lifting her with the motor unit, pushing her along the track suspended from the ceiling to the doorway. Then I climb the step stool, open the door that adjoins the bathroom, reach in and grab the next strap and hook to attach it to the handle, lower her until the bathroom side strap is taut, unhook the main strap and hook it onto the bathroom strap loop, raise her up until the extra strap is slack and unclip it, then climb down from the step stool. Next thing is to get around the end of the swing away shower curtain rod, position her over the bath seat in the tub, hold her legs so that she won't get them caught between the seat and the edges of the tub and lower her into the bath seat and unhook the sling from the motor. Once I have the motor (still suspended) secured out of the way, I can turn on the hand held shower and commence washing my 17 year old daughter. She doesn't like it and doesn't keep still. Shampoo and soap get in her eyes, occasionally she gets a mouthful of water, and she tries to pull away from me when I want to wash under her arms. Telling her to be still and relax is pointless but I do it any way hoping that one day she will understand and take my advice. Once she is clean and soap free, the whole thing starts in reverse with a towel around her so she won't get chilled, and a quick stop to put her tangled hair into a ponytail so it won't get tangled even worse during the drying off and getting dressed process. Once she is dressed and finally in the wheelchair, I begin the task of detangling her hair. Rub in some anti frizz and start combing with a wide tooth comb. She hates this, but it must be done. She cries and keeps moving her head but I just keep going. When all the tangles are out, here comes the hair dryer. This she tolerates a bit better, but still isn't thrilled with it. Finally her hair is dry and I can once again comb it and put it in a pony tail which then gets braided. After and hour and a half Hillary is clean and ready for breakfast. Like I said, nobody in their right mind would do this.

But I am lucky. Hillary is mostly easy going and once the physical things are done she's happy, it doesn't send her into hours of screaming. Not every parent is so lucky, and I thank God that I have a child who can easily be soothed. Choices are few when you become the parent of a child who has special needs. You can keep them with you and do your best to care for and protect them, give them as happy a life as it is in you power to provide, or you can give them up, let someone else do it. I don't sit in judgement of anyone, we all do the best we can within the parameters of who we are and what our situation is. Sometimes it is hard to think that, not to judge others, or ourselves. If anyone is judging me, it is ME. Couldn't I give her more time, better care, a happier life.......etc. But when I take a moment to just sit down and consider all the options and how happy Hillary is, I realize that I am simply doing the best that I can and while perhaps someone else could do it better, I'm doing a darn good job--even if I'm not in my right mind.

Bittersweet

So I went to a concert today at Hillary's school to see her perform with the chorus. They did a program about Martin Luther King, Jr. It was nice, and they had Hillary with her aide on stage with the chorus and she was playing a drum and a tambourine. As I sat there I was torn between being happy that she was being actively included in something that she obviously enjoyed, and feeling kind of sad and tired of watching Hillary doing pretty much the same thing and feeling like I was pretending that she could really do it herself. It was bittersweet to be sure. Most of what I do with Hillary is bittersweet. Happy that she is being given the chance to do "normal" things and have a happy life, sad that she can't enjoy them the same way that I would. But if she is enjoying things in her own way, why should that be sad? We all experience life in a slightly different way, no two people take the same thing away from a shared experience.

broken shells

BROKEN SHELLS
Anyone who has ever spent time on vacation as a beachcomber knows that what you are looking for is the perfect, complete shell. No cracks, nothing broken off, beautifully polished by the ocean; whole. This is what I was always looking for, passing over the broken, slightly imperfect, and small pieces of broken shells. They were not perfect, so why give them another thought? What value were they to anyone? You couldn’t put them on display, say “look what I found!” with pride. No, at best you might put them in the bottom of a potted plant for drainage. How could they possibly be worth anything? Let them be--eventually maybe they would be pulverized and become part of the sand, easily forgotten.
That is what I used to do, and think. What changed my mind? My children. I say that like I have so many. I have two. Two girls. One whole and perfect, the other broken, imperfect. Oh, she looks perfect in her baby pictures. But look at her when she’s a little older and you can see right away. Even if the wheelchair didn’t tip you off, the low facial muscle tone would, as would the drooling and a host of other things. She is my youngest. Is she the one who taught me to see the beauty of broken shells? Well, not really. That honor goes to the older one. When Anna was a small child and we would go to the beach, she helped me look for shells, but she was not as discriminating as I was. She looked for pretty colors, nice shapes, interesting patterns, no matter whether it was whole or just a small broken piece. To her it didn’t matter. She would bring them to me as if they were diamonds, precious pieces to be wondered at and admired, displayed with pride when we got home . That was when I began to see the beauty of broken shells. When Hillary came along and we realized that she was “broken”, it was a devastating shock to all of us except Anna. To her, she was just her sister, someone to play with and love, someone of great value--like the broken shells she used to bring me. It was Anna who saved me from falling apart. There she was, just being a kid, talking to and playing with her sister, introducing her to her friends as if she were just like their siblings. In some ways that was true, she was a rival for our attention, she made noise and needed us. If Anna needed to have a ride to scouts with someone else, it was it was the same as the other kids. The only difference was the reason she needed one. While the other kids might need a ride because their sibling had soccer at the same time on the other side of town, Anna needed one because her sister had physical therapy. To her it was the same basic thing--she needed to be at point A at the same time Hillary needed to be at point B.. It was I who felt the abnormality of the whole thing. When I just stopped and looked at Hillary through Anna’s eyes, I could see that in spite of her “brokenness”, she was the perfect sister. Someone to be placed right along side her friends’ siblings, someone who was a natural part of her life, her family, and of great value.
Watching how Anna developed a relationship with Hillary taught me that every shell, every person, whether whole or broken or just a sliver of what they were intended to be, was beautiful and valuable and worthy of a place of honor. And so I see my daughters as shells, one whole and perfect, the other one a sliver that has such great beauty I simply do not care that she isn’t whole. I’m just glad that she is.