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Tuesday, July 20, 2010


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.

Wednesday, July 14, 2010

She Grew Up

Two little hands
That want to help
“Mom’s too busy now
Watch t.v., go away
I’ll show you how
Another day.”
Two little ears
That want my voice
“No time to read
Please go and play
I’ll read your book
Another day.”
Two little feet
That run about
“Please don’t run
What’s wrong with you?
Can’t you find something
Quiet to do?”
Two little eyes
Are watching me
“What do you want?
Did you want to say
That you can’t wait
Another day?”
Two little hands
Wipe two little tears
“Mommy, Mommy,
Can’t you hear?”
Another day, another day
The ‘little’ hands are
Slipping away.
And it came to pass. The little hands that wanted to help are now the hands of a capable and independent young woman.
I wrote this poem in December 1993 when Anna was 4 1/2 years old, and Hillary was 1 year 3 months. It had been one year since we first noticed Hillary’s seizures and began the journey of being a family with a child who has special needs. It was a very stressful time for all of us, and emotions were such that riding the most thrilling roller coaster would have seemed like riding a turtle in comparison.
So it was that as Anna turned 21 I reflected on what kind of childhood she’d had. Would she remember the times I was too stressed out to play with her, the times I lost patience, or did I hide my feelings from her so well that she didn’t realize how upset I was? I first wanted to remember a happy time when she was our only child, when everything was easier and optimism about the future ran high.
It was the summer of 1990, probably a month or so after her first birthday. Anna was busily climbing in and out of the kiddie pool, picking tiny cherry tomatoes from the garden, washing them in the pool water and eating them. White puffy clouds occasionally blocked the sun just enough to keep the July day from being too hot. I remember sitting in the grass, alternately watching Anna and the honey bees buzzing from clover to clover. It is the last memory I have of being truly at peace. There were probably more times I felt that way, but this one sticks in my memory. There was a companionship between us, mother and daughter, that had been apparent from her birth. She cried when someone else held her for too long, and when she was upset there was nobody she wanted except for me. Poor Bruce! He’d be trying to calm her and I’d take her from him and she’d quiet right down. When she was about eight months old, she’d turn and give him such a look once in my arms, and curl her raised little hand into a fist as she looked at him.
Fast forward a bit to 1992 and the expected event of Hillary’s birth. We told 3 year old Anna that being a big sister was an important job, and all the fun she would have teaching her little sister how to eat, run, and play. Always a serious child, Anna took her job as big sister to heart and once Hillary was born took delight in helping take care of her, kissing her on the head, and sitting on the floor next to her. I recall coming out of the shower to find Hillary in her infant seat on the floor with Anna sitting next to her on the floor watching a Barney episode in which two girls were singing a song about sisters, and Anna singing along. Even after Hillary’s medical and developmental problems began to show themselves, the big sister’s attentions never lessened. She’d go to some of the doctor’s visits with me, and when Hillary started having therapies in early intervention in 1993 she’d participate and help in any way she could. Anna took it all in stride, and even when I was giving Hillary injections of medication to try to control her seizures, she gave her favorite doll shots, like it was just part of being a baby. I recall one time that she asked me when her own seizures stopped--she truly thought all babies had seizures. What a tough thing to explain to a 4 year old!
Anna still remembers a dream she had when she was about 5 years old. The gist of the dream is that Hillary is sick and on a stretcher covered with a white blanket and being wheeled out of the house and Anna can’t find me. I remember her telling me about it at the time, but was surprised that she still remembers it now that she is an adult. When she was in second grade, the teacher gave an assignment with a writing prompt. The children were to write a story about finding a magic pebble that would grant them one wish, and what that wish would be. The stories were posted on the wall outside the classroom for parent teacher conferences. Reading the stories while looking for Anna’s was amusing, as mostly the kids were wishing for toys or sport related things. When I came to Anna’s, tears filled my eyes as I read her wish: that her sister could talk so they could stay up all night talking to each other. It is for this reason that I’m not surprised that she is considering  attending graduate school to become a speech language pathologist with the hope to work with young children. Of all the things that we told Anna she would have to teach her younger sister, I believe that Hillary’s lack of speech and communication is the most frustrating and heartbreaking to her.
Perhaps the reason I remember that one golden day in July of 1990 with my first baby is that things were so simple, and the future seemed so happy and easy. I hope that Anna remembers all the fun times with me, and not the times that I was so stressed out and busy that I put her off. One thing I know for sure is that time flew and that little girl, in spite of all the stress in our house, has become a wonderful, smart, talented young woma

Saturday, July 10, 2010


All summer long the poison ivy mocks me. It grows up the trunks of two of our trees out back. It's huge! The leaaves are the size of a basset hound's ear. It waves at me as I walk around the neighborhood. At the park it watches me from the trees and among the weeds as I stroll along the pathways by the lake. I can hear it giggling while trying to entice me to touch it by intertwining itself with other benign plants. In my yard I try to keep it at bay with weed killer. Laughing at me it slurps the tasy treat and begs for more. As I trim the forsythia growing by the patio, it licks at my ankles until I notice then chortles as I run into the house to wash and put on socks in July. Knowing that I will become distracted by the heat and one day show up once again in sandals to do some yard work in its proximity it waits. I know that it feels safe, as it is ubiquitous and I cannot rid my yard of the nuisance. It alwyas threatens me, knowing that if it can just sneak into my grasp I will be itching for weeks. I remember all too well the last time it was able to get past my defenses by mixing in with old leaves in the spring and finding the one spot on my arm not covered by coat or gloves. In moments of unreasonable paranoia just before falling asleep at night, I swear that I can hear it rustling, growing closer to the house wanting to knock on the window by my bed. It sighs in contentment as it hears time after time that my attempts to hire someone to eradicate it have failed. In spite of its tenacity I will not give up.
When I was about 9 years old my slightly older cousin Randy, the daredevil, ate a leaf off a poison ivy plant in answer to a challenge from his big brother Keith. I thought that he would get poison ivy inside of him, on his tongue, growing out his ears, itching inside his stomach. But nothing happened to him. No itching, no leaves growing, he was still just Randy my daredevil cousin. My sister in law is so allergic to it that if she is exposed to it she will need a prescription to treat the rash. Me, I just get the itchy, weepy rash that lasts for a couple of weeks at least. It's inconvenient and uncomfortable, keeping me up at night in spite of antihistimine and Calamine lotion.
We have an odd relationship, the poison ivy and I. I don't want it in my yard, yet I see the beauty of it. In the Autumn it turns a beautiful golden color. Funny, I thought it was only reddish or green shiny leaves, growing gracefully up the trunks of trees. The tiny roots on the vines holding it tight to the trunks look like fuzz, tempting me to touch them to see if they are as soft as they look. I know that if I gave in to my curiosity about the texture my skin would be in trouble.
In the Autumn, it gives up its aggressive growing and is content to rest there on the trees and the ground. Covered with a blanket of fallen leaves, it will rest peacefully through the winter until the warmth of spring awakens it to resume its trek towards the sun. Are the trees in cohoots with the poison ivy, allowing it to grow up the trunks, and agreeing to protect it with a blanket of leaves for the winter? In exchange for what? What is the ivy doing to help the trees? Perhaps it is more like a bully, "let me grow here or else"! Could it be that the tree is indifferent, "grow where you like, just don't bother me"? It's a mystery to me, one which I ponder occasionally over a cup of coffee enjoyed here on the patio, where my mind is free to wander where it will for a few moments as I take a break from the activities and cares of the day.
What is that rustling noise behind me?