Special Child, Special Parents

Being a parent means many things to many people. To some, it’s a calling. To others, a longing. To still others, it’s merely another title to add to the resume of life. There are good parents and bad parents and lots in between. However, if you’ve ever met the parents of a disabled or special needs child, you’ve probably met some of the best parents there are. My friends Sue and Brian are great examples of this and truly have become my parenting role models. This is their story.

Jessie was born 23 years ago. She was Sue and Brian's second daughter and they were thrilled to welcome her to the family. For a while, everything seemed fine. It wasn’t until Jess was several months old that one of Sue's friends took her aside and gently suggested that Jessie see a physician because something didn’t seem right. Since Sue was a nurse, this was especially difficult to hear. Jessie was indeed developmentally delayed with no particular cause or diagnosis. They knew their lives were forever changed. Nevertheless, they forged ahead. They enrolled Jessie in classes and programs and sought out every possible resource that could help them and help Jessie. They eventually had a son and then another daughter and somehow fit Jessie and her unpredictable nature into their hectic lives. They certainly faced daunting challenges that could have damaged their family life or their marriage. They never let that happen.

What I’ve learned from Sue and Brian's parenting skills is that they have a seemingly unlimited supply of patience and love. Despite the fact that they are at an age when many couples are beginning to enjoy the benefits of an empty nest, Sue and Brian are sitting patiently with Jessie as she watches Mister Rogers or Lawrence Welk, two of her favorite TV shows. Sue makes no bones about the fact that the life they lead is not easy. Once a special needs child graduates from high school, the programs and opportunities for parental respite are few and far between. Yet somehow, they’ve managed to wrap their lives around Jessie and make it all seem so easy and so worthwhile.

Still, what’s most impressive about Sue and Brian and their incredible love for Jessie is how many lives they have touched through their unique family experience. When I sit behind them in church, I watch as they give Jessie gentle pats on the back. I listen as Jessie sings along, often better than the professionals. She sometimes cries when the songs are too sad, but rather than segregate her from the congregation, they reassure her, as do her brother and sisters who do a terrific job modeling their parents. Now that Jessie's siblings are teens and older, they occasionally spend evenings or afternoons babysitting their adult sister, something most young people may never experience. In return, they too have been given the gift of kindness, compassion and generosity that have made them all outstanding and mature young adults.

My own kids have also been lucky to have been touched by Jessie and her bright smile and unbridled enthusiasm. To know Jessie is to know pure innocence and happiness. She always smiles and loudly proclaims: “It’s a sunny day!” She runs to greet nearly every visitor and has an infectious laugh that makes me smile every time she’s near. We know not to sit too close to her in church only because she just loves to socialize and wants to turn around to say hi and hold our hands. Often, Jessie's presence is simply the best part of church.

There are so many other stories like Sue, Brian and Jessie's but few that have made such a deep impression upon me. Although I too am the parent of a developmentally disabled child, Sue and Brian continue to motivate me to be more patient, more loving and more generous with all aspects of my life. And, of course, Jessie inspires me to be happier because in her world, every day is a sunny day.

Every Day Is Family Day

In case it’s not on your calendar, (it definitely wasn’t on mine) Monday, September 25th is Family Day. It’s a day when we’re supposed to eat dinner together with our families. Supposedly, TV Land, the cable television channel, will go “dark” between 5 and 6 pm that day in support of our efforts and not tempt us with “Leave It to Beaver” reruns or something else more compelling than mealtime conversation with our kids.

It’s an intriguing idea and this is apparently the 5th year that it’s been done. I’m all for eating dinner together and the resulting benefits, although in a household of teenagers, here’s a typical dinner conversation:

“How was school?”
“Good.”
“How was practice?”
“Good.”
“Anything new?”
“Nope.”
“Something bothering you? You seem quiet.”
“OH MY GOD, MOM……!”

So you can see why I’m not necessarily putting up the Family Day garland in our house. We do try to eat together, but that’s not always possible, thanks to field hockey, music lessons, rehearsals and various meetings at school. And therein lies the problem, or the question: If one network shuts down for an hour, will anyone notice? Probably not, because nobody will be home.

Television isn’t the one thing that’s keeping today’s families from eating dinner together. I’d even hazard a guess that if somebody turns on TV Land Monday night and sees a dark screen, their first thought won’t be sharing a meal, but rather: “Dang, the cable’s out again.”

If Family Day is to be a reality and not a dream, then the lives of today’s typical family will have to come to a screeching halt. Sports programs will have to suspend practice and play, but then when else can the working dads and moms coach the kids? Rehearsals will have to be cancelled, but there’s never enough time to practice for an upcoming performance. Lessons will have to be missed, which will probably thrill the kids because they haven’t had the time or the motivation to practice. And meetings – PTO and PTA and School Board and Athletic Committee and Scouts and Auction Committee and every group that meets under the fluorescent lights will have to NOT MEET. It’s an absurd idea that sounds blissfully tempting if your weeks are blanketed with overlapping schedules and pickup points and carpools and commitments.

For so long, we’ve been told to raise well-rounded kids and to encourage them to try different things. And so we, and they, did…apparently all at once. We’re the victims of our own ambitions for ourselves and our children. I have no solution, nor am I preaching that we should stay home and play Yahtzee instead of watching our kids play volleyball. I think it’s great that kids participate in sports and play music and get involved in lots of extra-curricular activities. We’re doing a pretty good job juggling here in our house, but I can’t help but wonder how single parents, dual-working parents, and parents of large families handle the challenge. My hat is off to all of you – you rock!

I think every day is Family Day and although it’s nice that someone’s trying to make it an official event, I think it’s OK if we all celebrate it in our own little way. I’d rather not add anything to the list of things we parents should feel guilty about. So if you see us driving around while eating fast food, at least we’re eating together and you’ll know that we’re having our own “moving” tribute to Family Day. Hey, it’s the least we could do.

Second-Hand Hurt

EE Cummings - i carry your heart
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)

i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Here’s something for the list of stuff they don’t tell you before you become a parent. There are probably thousands of things on that list, like how little sleep you’ll get, how often you’ll encounter vomit and how low your own self-esteem may get thanks to your children. Most of the time, experienced parents don’t tell you these things because it might scare you away. This might not scare you away, but it might surprise you.

Here it is: You will hurt more for your kids than you will for yourself. If you’ve ever been disappointed, been dumped, felt unattractive or been depressed, multiply that ten-fold when you watch your kids go through those emotions. And add a dash of helplessness to really make it difficult.

Maybe I’m naïve, but this I never expected. Now that my kids are teens, I encounter this on a weekly basis. Broken hearts, college rejections, hurt feelings, not being asked to the dance, low self-confidence…sometimes I feel like E.T. with a glowing heart when they go through these things and all I can say is “Ow!”

I realize that I weathered all of these same storms and made it through as a better and more well-rounded and perhaps empathetic person, but my first instinct is to throw my kids a Pity Party and try to fix whatever isn’t working. That’s the last thing that they want – my involvement. In fact, usually, my best course of action is none, which makes it infuriatingly frustrating. I usually have to sit back and hope they might want to talk to me till they feel better – they usually don’t. And so I wait and I heap on them generous doses of silent love and understanding and hope that it will be enough. It never is…for me or them.

100 Things About Me

Nobody has asked me to do this, but I must take a computer break for a while. My carpal tunnel/tennis elbow issue is screaming for this. And so, I leave you with some unsolicited thoughts from my freakishly random brain. Feel free to read them a little at a time, all at once or not at all. Nevertheless, this is bits and pieces of me....

1. I am the daughter of a former amateur racecar driver.
2. I spent my childhood summers at racetracks throughout the Midwest.
3. I can throw a very good football spiral.
4. When I was young, there were three things I wanted to do when I grew up: Be a mom, work in advertising, work in an office. I was blessed to do all three.
5. My first job after college was typing McDonald’s commercial scripts.
6. My middle name comes from the main character in the musical “West Side Story.”
7. My daughter’s first name comes from the same musical.
8. Ironically, “West Side Story” was also one of my husband’s favorite musicals, even before he met me.
9. One of my totally useless talents is the ability to walk with a full cup of beer on my head. Don’t ask how I figured that out.
10. I can whistle the main melody and the counterpoint to the theme from “Bridge Over The River Kwai.”
11. I break out in a rash if I sit in the sun in jeans or denim.
12. I have almost no allergies.
13. I had no cavities until I was an adult.
14. I love chocolate, especially dark chocolate.
15. I hate white chocolate.
16. The thought of a wooden spoon or stick in my mouth makes my skin crawl. Therefore, popsicles are not appealing to me, nor are tongue depressors.
17. I applied to one college at the end of high school, even though I had never seen it. I went there because it was in Florida and my brother went there. I transferred the next year.
18. Halloween is my favorite holiday because it’s fun and doesn’t require presents, unless you count candy.
19. There is nothing, NOTHING, better in the world than the sweet smell of a baby. No, not THAT smell!
20. If I could do it all over again, I would have joined every club possible in high school.
21. Watching the news depresses me.
22. Hearing the sound of soap operas during the day depresses me even more.
23. I can’t stand Oprah and her self-absorbed pop psychology.
24. I would happily attend a taping of Oprah’s show if I knew she was giving away things. (Yeah, I’m that way.)
25. One of my secret dreams was to have People Magazine do an article on me.
26. I’ve always wanted to have my own newspaper column.
27. I’m horrible at arguing a point. I’ll back down faster than a cat confronted with a hose.
28. My oldest son is severely developmentally disabled and lives in a wonderful state-run institution.
29. His birth was both the most tragic and most beautiful thing that has ever happened in my life.
30. I believe there’s a special place in heaven for people that work with and for the disabled.
31. I’m terrible at and hate mingling at parties.
32. I’m pretty good at meeting new people if it is for a reason.
33. I’m much more shy than you would think when you meet me.
34. I love thunderstorms and severe (not dangerous) weather.
35. I’m obsessed with looking at the radar online.
36. One of the greatest feelings in the world is being completely lost in a great book. That has rarely happened to me.
37. I’m a lazy reader and am easily distracted, which is why I’m more drawn to “easier to read” books.
38. I’m embarrassed to admit that.
39. Math frightens me. When my kids were in sports and we had to do gym duty, I always got there early so that I wouldn’t have to work the concession stand. I cannot do math under pressure.
40. I get irritated when I have discussions with people that talk about themselves and never ask: “...what about you?”
41. I am not a good cook. Nothing I make tastes very good unless it’s out of a box.
42. I have a bad habit of cooking and/or ordering the same things over and over and over.
43. I’m a creature of habit. I do things the same way at the same time, over and over and over again.
44. I love change, but it’s really hard for me to initiate it.
45. Throughout my day, I often have the feeling that I have done something wrong, have said something wrong or have forgotten to do something.
46. Now that I’m older, I worry less about what I’ve done wrong, etc.
47. I hope to grow into a wonderfully eccentric old woman that loves life.
48. I hope to never dye my hair...unless vanity overtakes me.
49. I’d love to be thin, but don’t want to work that hard.
50. I have a ridiculous notion that I’m thinner than I am and am usually horrified when I see myself in photos. Duh.
51. I am rendered mute when in the company of celebrities. Therefore, I have no interest in meeting anyone famous.
52. I once had dinner with Mister Rogers. He sat next to me and showed me pictures of his kids. I could actually talk to him.
53. I am very irritating to shop with because I can’t stand moving at other people’s paces. (I’m often walking around people and passing them by.) My husband and I no longer Christmas shop together.
54. My dream car is a 1964 ½ Ford Mustang convertible, although I love the hardtop too. I think it should be red.
55. I think that spending a ton of money on a car is a waste of money.
56. I think bad thoughts about people that drive ostentatious cars.
57. I’m an excellent speller.
58. I’m an excellent driver.
59. At all family gatherings, I’d usually rather hang out with the men than the women, but I usually opt for doing the dishes.
60. When I make my kids bag lunches, I always include a cartoon from the newspaper. I scour the paper throughout the summer and collect good ones.
61. I listen to sports radio in my car. This is why I’d rather hang out with the men at family gatherings.
62. “Field of Dreams” is my favorite movie – ever.
63. When I was a child, I was in a bowling league and I was good.
64. I love bowling but hate the culture that surrounds it. That may make me a snob.
65. I cannot see violent, scary, gory, depressing or sad movies or TV shows, no matter how good they are and especially if they’re true stories. I find no entertainment in other people’s sorrow.
66. I believe that when we die we will find out the answers to questions like: Who really killed JFK? Where is Jimmy Hoffa? Who killed O.J. Simpson’s wife? Where is Osama Bin Laden?
67. I am in awe of humble people.
68. I can’t stand people that are loud, obnoxious and treat people in the service industry badly.
69. Conversely, I can’t stand employees that treat you as if you’re bothering them.
70. Sometimes I stare at my children because I’m stunned at their beauty and their talent and I can’t believe that we’re related.
71. The major perk about being a housewife is that when everybody leaves the house, I get to yell at them for not picking up after themselves.
72. I need to be around people, but I’m terrible about picking up the phone and calling them.
73. I often eat when I’m bored.
74. I do not like to share popcorn at a movie theatre.
75. I am not above living vicariously through my children...but hopefully they’ll never find that out.
76. I don’t really like wind. Breeze is OK, but gusty wind is not good.
77. If I were reincarnated, I’d be beautiful, thin and would sing like an angel.
78. My most embarrassing moment is when I accidentally tucked my skirt into my panty hose right before a large church service. The thought of that moment makes my stomach drop every time.
79. When I get angry, I slam cabinets and drawers. My family hates this about me.
80. I’m hypersensitive to other people’s moods and somehow think they always have something to do with me.
81. I love the fall – cool, crisp days and nights, school starting fresh, Halloween and, oh yeah, my birthday!
82. On the first day of every month, the very first thing I must say when I wake up is “Rabbit, Rabbit.” It’s a dumb superstition that I somehow think will improve my month.
83. I’ve now gotten my husband to say “Rabbit, Rabbit” on the first day of every month – ha!
84. When I talk a lot, I give myself a headache.
85. When I chew gum, I give myself a headache.
86. I’m a HUGE sports fan and I believe that there’s nothing more fun than sitting in a stadium or an arena cheering on my team in a big game.
87. I have been to one Super Bowl (in New Orleans) and my team, the Green Bay Packers, won.
88. Going to that Super Bowl was the best vacation I have ever been on.
89. I can breathe easier when all of my children are with me. Literally.
90. I love television and now I love it even more since we have a Digital Video Recorder. It’s changed the way I watch TV.
91. I’m a pop culture fanatic because we shouldn’t take life so seriously.
92. Great music during church gives me goosebumps.
93. I’d really like to know more about Jesus’ life between the ages of 12 and 30.
94. I believe that no religion is completely right and that persecuting someone who disagrees with your beliefs is wrong.
95. I’m a fairly devout Catholic, but I don’t believe that Jesus would speak against gay people.
96. My husband is my soul mate and sometimes I can’t believe how I got so lucky.
97. I’m a ridiculous sucker for a compliment. No, that’s NOT how I got so lucky!
98. My dad designed the Scrubbing Bubbles character.
99. Sometimes, with the right circumstances, I love REALLY loud rock music.
100. I can’t park a car with the radio on.