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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.