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?
Tuesday, November 30, 2010
Tuesday, November 23, 2010
Friends
My friends amuse and comfort me. Friday late dinner, and as usual the wait staff has to tell us it's time to leave because they are closing. The three of us together never run out of conversation. For a year or two our friendship was strained by an event that altered all of our lives in a very personal way. One of the things that initially brought us together left us bereft and reeling, so sudden and stunning an event that although we initially became closer, in time we bagan to drift apart, two of us still in the same boat, one of us barely treading water. Yet somehow we knew that 16 years of friendship could not end, that somehow it was better to continue to meet and work through the pain together than to be forever without each other's companionship. Although we are not all in the same boat any longer, we can come to shore and walk along the water's edge together and feel as one unit for a bit. There is no better way to spend time than with people who amuse and comfort.
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.
Wednesday, November 10, 2010
SO WHAT'S WRONG WITH GOOD ENOUGH?
You can’t turn on the TV or computer, or open a magazine without someone trying to convince you you’re not good enough. Teeth not blindingly white? Hair not shiny? Skin not glowing? Your floors are not perfectly shined and there’s some lint on the carpet? Did you buy the wrong brand of coffee, and have only the most basic types of foods in your pantry? Might as well just crawl back under the covers. Watch out! They might not be soft or fresh smelling, and your mattress may not be the right number for you. What?! You like it, you’re satisfied with it? Are you settling for good enough? You’re not alone. Me too.
There are, of course, times when you want perfection and anything less just won’t do. You don’t want your surgeon to say “Well, that’s good enough” half way through an operation and sew you up. Nor do you want the chef to halfway prepare your food and decide that’s good enough, then serve you an uncooked meal.
On a normal day, however, good enough works. It’s taken quite awhile, but I’ve come to accept that I’m happy with average. I brush my teeth and visit the dentist. So what if people around me don’t squint when I smile? My hair and skin are both clean. I’m not a Stephanie Meyer vampire, after all. I finally get it--nobody expects me to sparkle in the sunlight. My house will not be featured anytime soon in a magazine, but the beds are made, I’ve run the vacuum and done a cursory dusting. There may be some clutter, and too many pictures on the piano, but the people I love live here, and friends and family are welcome to visit. I promise to serve completely cooked food and make everyone feel welcome. Surely it’s good enough, and there’s nothing wrong with that.
There are, of course, times when you want perfection and anything less just won’t do. You don’t want your surgeon to say “Well, that’s good enough” half way through an operation and sew you up. Nor do you want the chef to halfway prepare your food and decide that’s good enough, then serve you an uncooked meal.
On a normal day, however, good enough works. It’s taken quite awhile, but I’ve come to accept that I’m happy with average. I brush my teeth and visit the dentist. So what if people around me don’t squint when I smile? My hair and skin are both clean. I’m not a Stephanie Meyer vampire, after all. I finally get it--nobody expects me to sparkle in the sunlight. My house will not be featured anytime soon in a magazine, but the beds are made, I’ve run the vacuum and done a cursory dusting. There may be some clutter, and too many pictures on the piano, but the people I love live here, and friends and family are welcome to visit. I promise to serve completely cooked food and make everyone feel welcome. Surely it’s good enough, and there’s nothing wrong with that.
Wednesday, October 27, 2010
Serenity Prayer Reflection
“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” --Serenity Prayer
How many times over the past 18 years have I prayed that prayer? I couldn’t begin to guess. The problem is that sometimes it is hard to know which is which. It’s not too hard when looking through the glasses of clarity. Mostly though, praying that prayer is because I’m having trouble differentiating between what can or can’t be changed, and fear. Looking at things through one of the latter three makes it difficult to figure things out.
Learning to accept things I cannot change is at times easy. I cannot change the facts about Hillary. Part of her brain is missing, her retinas have punched out areas, she will never have the ability to walk or talk, and she will always have seizures. Things I cannot change. What I can change (or have control over--depending on how you want to look at it) is what quality of life she will have. She deserves to have as many typical life experiences as possible, just like any other person. I cannot change other people’s reactions to Hillary or my requests on her behalf. I can only change my actions, reactions, and thoughts. There have been times that by changing my actions I have been able to achieve the outcome I was after. Figuring out when to keep chipping away at the walls I encountered and when to go around them is when I need that wisdom. Sometimes just changing the way I think about a problem is the key to finding the way to achieve it. Adapting to what is needed by the people erecting a wall can help me to get them to remove enough of it to get through. The times that I was looking at an obstacle through the lenses of fear, fear of failure, fear of another person’s actions, even fear of success were the times that things were much more difficult. Those were the times that I felt like giving up and saying “it’s impossible”. Reciting the Serenity Prayer is a way for me to refocus my efforts and ultimately identify and work through my fear which allows me to attain my goals for Hillary and give her the quality of life which she deserves as an American citizen and human being.
How many times over the past 18 years have I prayed that prayer? I couldn’t begin to guess. The problem is that sometimes it is hard to know which is which. It’s not too hard when looking through the glasses of clarity. Mostly though, praying that prayer is because I’m having trouble differentiating between what can or can’t be changed, and fear. Looking at things through one of the latter three makes it difficult to figure things out.
Learning to accept things I cannot change is at times easy. I cannot change the facts about Hillary. Part of her brain is missing, her retinas have punched out areas, she will never have the ability to walk or talk, and she will always have seizures. Things I cannot change. What I can change (or have control over--depending on how you want to look at it) is what quality of life she will have. She deserves to have as many typical life experiences as possible, just like any other person. I cannot change other people’s reactions to Hillary or my requests on her behalf. I can only change my actions, reactions, and thoughts. There have been times that by changing my actions I have been able to achieve the outcome I was after. Figuring out when to keep chipping away at the walls I encountered and when to go around them is when I need that wisdom. Sometimes just changing the way I think about a problem is the key to finding the way to achieve it. Adapting to what is needed by the people erecting a wall can help me to get them to remove enough of it to get through. The times that I was looking at an obstacle through the lenses of fear, fear of failure, fear of another person’s actions, even fear of success were the times that things were much more difficult. Those were the times that I felt like giving up and saying “it’s impossible”. Reciting the Serenity Prayer is a way for me to refocus my efforts and ultimately identify and work through my fear which allows me to attain my goals for Hillary and give her the quality of life which she deserves as an American citizen and human being.
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