More memories....

When I was ten years old, that was a very rough year for me. A lot happened to me that year, some of it very good and some of it very bad. I started the year out getting hit by a car in the neighborhood. It was my fault. I was riding my best friend, Janet's new blue Schwinn and I rode right out the end of her drive way and into traffic. I hurt my left knee, scraped it up good. From the outside, there were no other injuries so my Mom swabbed Mercurochrome on it and wrapped a bandage on it and sent me on my way with a warning not to be so stupid. Years later, of course, there was damage to that knee and I have a hard time with it ever since but that's neither here nor there.

That summer something else bad happened to me but I'm not going to go into that now. One huge bad thing that I will write about - it felt bad at the time - was that my Dad sold his bar/restaurant that had been my only home and moved us to the dreaded "South side" of town. South side at that time is pretty much midtown these days but back then moving anywhere south of 60th street seemed like a whole other city! I didn't want to go! I was leaving everything I knew and loved and I was NOT happy about it. My sister, the only other sibling left at home, couldn't care less. She was going to be one block from St. Joe's where she went to school and that was a good thing for her. I was going to St. George's, back in the old neighborhood. The only reason I didn't have to change school was because my mom taught second grade at St. George's. So I got to stay there. If I had lost that too I would have been a nutcase that year!

So, we moved. And guess what? I made new friends in my new neighborhood and they were all pretty cool kids. And the neighbor had a pool so I didn't really even miss Lake Michigan all that much.

Then came Christmas...
Now I'm not sure how my mom packed our stuff when we were moving. I know that for about two months we couldn't find my gym shoes so I got out of gym class for that! At Christmas, we always put each ornament back in it's original boxes and carefully placed in three large trunks. It was that way every single year. But the year we moved, we couldn't find our angel anywhere. We had the coolest old angel on our tree. I think my parents got it back in the 30's and she was a bit worse for wear but she looked like Greta Garbo in sparkles and when you got her on the tree she shined like a goddess and it all was right with the world. Putting that angel on the tree was the grand finale to decorating. She was the last piece...the one we all waited for...long after the last strand of tinsel had been placed. Once she was there we all stood back in childlike wonder. And now...we moved and she was GONE!!

I couldn't take it. After all the horrible things that I had been through that year I needed that angel. I needed that small tattered harbinger of hope that everything was going to be okay...but she was gone. I wailed. I cried. I accused my mom of throwing her away. I was inconsolable. My poor mom searched everywhere for that angel. She was just plain gone.

That was my dad's cue. Now my dad was a peace loving man. He never liked conflicts of any kind which, as a kid, often could work to my advantage. If I wanted something and my mom said no, I could pitch just enough of a fit to have my dad given in. I was sneaky like that sometimes. On this night, however, my dad was the knight to the rescue. He told me that this was a new home and a new year was coming and we had to make sure that our tree was ready for all the good changes that would be coming our way. He put on my coat and hat and took me right then and there to Wilson's. Now, if you are from Kenosha, you remember Wilson's. You could get anything there. Even a myna bird. They had a hundred angels to choose from. Well, to a grief stricken ten year old it seemed like hundreds. It was probably more like 15. My dad told me to take my time. He said this wasn't something you rushed because that angel was going to be with us for a long time and we wanted to make sure she was the special one with the special blessings. I looked at all of them. They were all very pretty. Some in white and gold, some in green and red. And then there was her. The one in white with silver trim. She held onto two small candles that actually lit up when she was plugged in. But her face...that was what got me. She had this tiny, half-knowing, comforting smile on her porcelain face. I knew instantly she was the one.

That angel was on our tree for the next 40 years. When my mother moved out of her home, I took that angel home with me. Last year, she sat in front of our tiny table top tree with her candles glowing hopefully in the night. This year, I couldn't find her. I know she is here somewhere, just as my mother knew our old angel was somewhere back when I was ten. Maybe that's how the angels do it. They are here when we need them most and then they simply disappear and it's time to find a new angel to bring you special blessing for the next part of your life.

Angels Among Us

My niece's daughter, Kennedy Jaye, was born with a rare developmental disorder called Angelman Syndrome. Angelman's is caused by the deletion or inactivation of critical genes of the 15th chromosome. Characteristically, those who have this disorder have delayed intelligence and development, seizures, an unstable jerky gait (if they ever walk), hand flapping movements and moments of frequent laughter and smiling. They are generally happy individuals.

Kennedy was born in 1997 amid the usual fuss and flurry of any expected new life. Shortly after her birth, it was apparent that something was wrong. She didn't seem to be developing normally. After many tests, she was initially misdiagnosed with cerebral palsy but it was still apparent to us that something more was wrong. Her mother went on a quest to get the best doctors and specialist to perform as many tests as they could so that we all would know what we were dealing with and how to deal with it. Eventually, a couple of these specialists agreed - it was Angelman Syndrome. It took us a while to even figure out what that was and we didn't have time to stop and feel sorry for Kennedy or ourselves. These things happen.

Kennedy herself took no time to feel sorry. She has spent the last 10 years getting into the hearts of everyone who comes in contact with her. Starting school, always a scary time for parents more so than children, was a real obstacle. She is extremely sensitive to heat and humidity and prolonged exposure to either can bring on her seizures. Not all of the schools here in Kenosha are air conditioned so there was a brief fight with the school districts in town to get her into one that was. Turned out, she ended up at the best possible school for her. The other kids in her class love her and all want to be Kennedy's special helper each day. Every parent of a special needs child worries that their child will not have friends, that they will be singled out in the classroom and never know what it means to socialize. Not so with Kennedy! Since starting school she has been invited to her classmates homes for parties and get togethers just like everyone else in the class.



Weak back and hip muscles combined with scoliosis make it very difficult for her to walk. She must have assistance at all times. To gain some strength and to learn to sit up, she started going to Equine Therapy. The gait of a horse is identical to that of a human being. Research shows that for those who have weakened back, hip or lower torso muscles can show marked improvement by riding a horse! It really is amazing but it works! In order to keep Kennedy from listing forward as she was prone to do, the therapist had her ride the horse seated backwards. Of course, she does not ride unattended. Two "helper" walk along side the gentle mount to make sure she stays put. Because she wanted to reach the horses head, riding backward forced her to sit upright which did wonders for her back and posture. Now she sits bolt upright, on horse or off. A few weeks ago, they had a horse show at the stable where she rides. She won 1st Place for Best Posture! I know that seems like a small thing, but for a kid who sat bowed over like the letter C since the time she first was able to sit, that award was awesome!




Angelman's used to be called "the laughing puppet syndrome". That's because one of the characteristics of the disorder is bouts of uncontrollable laughter to the point of tears. She does this once in a while - starts laughing in a way that makes you think she is just happy but her wide eyes and tear stained cheeks let you know that she is in distress. It's heartbreaking that the sound of a child's laughter doesn't always mean happiness. Kennedy cannot speak and so cannot tell us what is bothering her. We have to guess and when we can't guess it is the most frustrating thing in the world.

After she was born and we found out what was wrong with her, I think that silently each one of us asked how this could have happened and why. But now, there isn't a person in our family that would choose to not have this angel in our family. She's the most loving, caring, sweet child in the world. When she hugs you, you KNOW you are LOVED! When she pulls your face close to hers to give you a big, sloppy kiss on the cheek or just to coo in your ear, there is no place you'd rather be than right there in that moment with that little girl. It is the most perfect peace you can feel and it's the gift given to you by this "imperfect" child.