Year Twenty Two!

Twenty two years ago our second child was born. Outwardly beautiful and perfect, a true bundle of joy. Unknown to us at that time she was afflicted with Aicardi Syndrome. We had no clue exactly how this innocent little person would change our lives, our hopes and dreams, and shape us all into who we are today both individually and as a family. She came here not for us to teach her but for her to teach us.

Aicardi Syndrome includes malformation or complete absence of the corpus callosum and other brain deficits, retinal lesions with other eye abnormalities, scoliosis and other skeletal problems, and intractable seizures.  Life expectancy is shortened with the literature (at that time) stating 3 years maximum.

Recently we celebrated Hillary’s 22^nd birthday by taking her to a street fair in a neighboring town.  The weather was perfect with low humidity, air temperature around 70, a light breeze and a bright sun in a deep blue sky dotted with puffy white clouds.  As we wheeled her through the crowd occasionally one of the vendors leaned over to talk to her.  We told them it was her birthday and she ended up with a small collection of trinkets—stickers, key tags, and a balloon.  She enjoyed the extra attention and we had a nice time.  When we returned home we had chocolate birthday cake and ice cream which she loved, and some gifts wrapped in brightly colored shiny paper.  She enjoyed looking at the gifts but lost interest as we opened them and showed her what was inside.  Sometimes she’s a funny girl!  Over all she enjoyed her special day very much.

We have learned through Hillary that slowing down and enjoying the simplest of things is a good way to live, birthday cake is meant to be enjoyed without guilt, and every year survived should be celebrated for the gift that it is.

Cinderella's Slipper & a Red Dragon

         I know that there are people out there, who may just be angels on Earth, sent to remind me that there are those who cherish Hillary as much as we do.  Over the years as I grumbled my way through crowds at the mall and cried inside at amusement parks there is usually someone who extends a kindness unexpectedly, reminding me that others see my daughter’s value and recognize our family’s challenges.  Sometimes it’s as simple as stopping to say hello to Hillary and wish her a happy time, or opening a door as we approach.  There was a time when we were traveling through Ohio and a woman stopped at our table in a restaurant to tell me what a good mother I was. So simple, yet so powerful and needed at the time; I still tear up when I think of it.  I think it was probably about 15 years ago when we were at the mall shopping in the Disney store, unknown to us we were being watched.  We exited the store and were walking through the mall when we heard a man calling to us.  We stopped and turned around as he approached, holding out a small snow globe with Cinderella’s glass slipper inside.  He asked us if we would allow him to give it to Hillary.  He said he had been watching us in the store and Hillary had touched his heart.  The snow globe sits on her dresser where every morning and night I am reminded of how kind some strangers can be.  It was around the same time that we went on a Girl Scouts trip to Hershey Park as a family.  As we were sitting on a bench with Hillary next to us while Anna and her friends went on rides we were approached by a small group of teenagers.  One of them extended a red stuffed dragon toy to Hillary and asked if it was ok if she had it.  It also is in her room where I see it every day.  I could tell of more incidences of such random kindness as they are kept in my memory like treasures in a box.  I examine them on those days when I need an extra reminder that angels are among us.

Recognition

While our high school robotics team was hosting a huge competition, and our girls lacrosse team was holding a fundraiser, three of our high school students traveled to Stratford, NJ for the state finals in Special Olympics Bowling.  I can assure you this was no easy feat for those three athletes, and meant as much to them as any other event meant to other students, and perhaps more.  You see, these three youths don’t get many chances to succeed, let alone excel.  The joy and pride they show when their name is called when results are announced is astounding.  As a parent, I watch with mixed emotions; a whole pot full of simmering emotional stew in fact.  While I am pleased that my daughter has come this far, I am displeased at how inconvenient the weekend has been.  I am glad that she has had this opportunity, but sad that she has so few opportunities to participate in activities in which she is not simply a spectator.  It will be nearly another year before she has the chance to participate again, and while I am somewhat relieved by not having my Saturday mornings planned in advance, I am upset for her knowing that there will long expanses of time unfilled with meaningful activity.  So it was, with all that running through my mind that we sat as a family at the most recent town council meeting. We waited through awards and acknowledgements for our police force; a citizen who had been instrumental in capturing a bank robber; and our girl’s high school track team’s winning seasons until it was Hillary’s turn.  Our mayor and town council were recognizing the achievements of Hillary and two of her classmates’ participation and success in the state level Special Olympics bowling competition.  As I wheeled Hillary up to the podium as her name was called I was able to see the faces of the others present.  What I remember is the look of astonishment and pleasure on some of those faces.  Hillary was the only one in a wheelchair, and if you have never been involved in the Special Olympics bowling, you may not know that there is a ramp bowling division.  It lasted only a few moments, but they are moments I won’t forget.  Once we were home and she was tucked into her bed, I had time to reflect upon the recognition bestowed upon my humble daughter.  I felt proud not just of her and of us for taking her to events, but of our town.  It is not perfect, but I am proud to say I live in a town where someone like Hillary is given a certificate of recognition by the mayor.  Any recognition of the difficulties she overcomes to participate and succeed are most welcomed, and restore in this mother’s heart the hope that somehow, Hillary is making a difference in our small corner of the world, and can truly feel that she is part of our town.

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…….

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.

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.

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

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.