Rest In Peace, Dear Man

He was a 1960’s neighbor – the kind of over-the-fence chats for 45 minutes instead of a wave from across the street. He watched over my family while I watched over him. From the window in one of my bedrooms I could see him sitting on his sun porch. When we happened to realize that the other was looking, we would both grin and wave.

When I first met him eleven years ago, his dear wife was stepping towards Alzheimer’s, and he was photographing every moment in his mind. They were both in their late 70’s and had been married since they were 17 years old. They were two hearts and two souls joined in the way the rest of us dream about.

On July 4th several years ago, he lost his other heart, and from that point on his smiles were few and far between. But, they were always there for me and my family.

He needed a little help, and I needed to help. Every time I sent a meal to him, he would return the empty dishes filled with candy for my children. I planted the flowers in his front garden, and he watered them religiously. Together we attended the funerals of other neighbors, and for a special treat, he loved to take my family to lunch at Red Lobster.

In recent years, I watched his health decline, but he stubbornly refused to give in to infirmity. He was hard-headed and constantly told me to stop helping him so much, but I knew he secretly enjoyed the attention and companionship. He remembered what life was like in the slower, quieter past. He remembered a time of neighbor helping neighbor. He possessed the gentleman gene, and although it was difficult for him to rely on others, he eventually realized the need.

Just four short weeks ago, he was diagnosed with brain cancer, an insipid beast that would send him to be with his wife sooner rather than later. The doctors told him there was no hope and that he had two weeks to two months into which to pack the rest of his life. The first week wasn’t too bad. The second got a little worse, and by the third and fourth, he just wanted to go. He was tired, sick, in pain, and feeling like a burden to everyone.

This morning, he got his wish. Mr. Ed Baldwin took his last drugged and pain-free breath at 6:55 am. He was reunited with his lovely wife, Dot, and I will miss him very, very much.

Thankful Thursday

Summer has finally arrived, and brought with it suitcases full of heat and humidity. Today’s Thankful Thursday list is dedicated to all things cooling!

Today I am thankful…

• for banana popsicles that drip cold plops of stickiness down overheated extremities


• for ceiling fans and that yummy burst of cold while standing under one right after a shower


• for sprinklers watering my garden and my children all at the same time


• for cold food dinners – barbecued chicken, pasta salad and watermelon


• for cotton clothes. I can’t imagine wearing anything else, except maybe linen, on these sweltering days


• for sitting on a wooden dock and swishing feet in lukewarm lake water while little fish swim by and nibble your ankles


• for homemade lemonade with sprigs of mint from my garden


• for iced water, iced tea and iced coffee


• for a car that has a working air conditioner, a full tank of gas, and a satellite radio


• for the shade of my big maple tree and my covered front porch

What do you do to keep cool in the summer?

Special Exposure Wednesday

Swinging is a great way to start the day! Really - just try it one morning and I bet your mood will improve drastically! (Thanks for the great pictures, Miss Amy!)

Why So Many Changes?

Ashley has been receiving ESY services for six weeks so far this summer. During those six weeks, she has had three different bus drivers, three different bus aides, three different busses and three different bus schedules. Her ESY hours have not changed – for the entire six weeks she has been receiving services from 8am until noon each day.

I just don’t get it. I will acknowledge that setting up bus schedules during the regular school year is a daunting task. A whole bunch of students have to be delivered to a whole bunch of schools. But during the summer, the numbers are drastically reduced. Why three major changes in six weeks??

As all parents of children with disabilities, especially children with significant disabilities, know, changes are difficult. For a child like Ashley who is deafblind, all the differences are magnified. Each bus, driver, and aide smell and feel different. She can tell when the time the bus arrives is different. She gets anxious when the schedule changes, and changes significantly. For the last two weeks, she was picked up at 7:10am each morning. Starting this week, she is picked up at 7:40am. She is going to the same school and school starts at the same time. So what is up with the significant schedule change?

And I’m tired of having to go through my spiel each time there is a change – “Ashley is deaf. She can’t hear you talking to her. She is blind. She cannot see the steps to disembark from the bus. She has seizures. Here is what they look like. Here is what you need to do and not do when she has one. Yes, she prefers to sit in the first seat behind the driver. No, you may not take away her ball of wires and pipecleaners. Etc. Etc. Etc.”

There are four weeks of ESY services yet to be delivered. Does anyone want to take bets on how many more bus changes and schedule changes Ashley will be expected to handle?

Holding Fast To Our Dreams

This past weekend I spent time with some of our Dreamcatcher families. Dreamcatchers is a state-wide support group for families whose lives have been touched by deafblindness. Formed ten years ago, Dreamcatchers is a 501-3c non-profit organization that relies on grants and donations to exist. We have a board of directors, but they are not paid for their time. All staff time and effort is graciously donated by our families. What that means in these difficult economic times is that our group is almost broke.

Each year in the past, Dreamcatchers has held a family retreat weekend. Bolstered by grants from our state’s deafblind project, our state Department of Education, and our state’s Department for the Blind, we have been able to bring all our families together for a weekend of respite, learning and networking, all at absolutely no cost to the families. In some cases, it is the only ‘vacation’ some of our families get. But we were not able to do that this year.

This year we received no grants from the Department of Education or the state Deafblind Project. And we are waiting to hear if the Department for the Blind will assist. So, we’ve had to change our model of support this year. Instead of a retreat weekend, we are having several day-long events in three areas across the state. Our families never all get together, but at least we are doing something.

Our first of those day-long events was held this past Saturday. It was a wonderful time of fellowship, story telling, advice gathering and celebration. Parents of children with disabilities, especially parents of children with a unique disability such as deafblindness, need a connection to other parents in the same situation. Often it has been the only thing that has kept me going during times of extreme struggle.

We parents need to know that we are not the only ones who celebrate battles won but worry constantly about the war. We need to hear how others have fought insurance companies, school districts, hospitals and other medical practices and restored the rights of their children. We need to know how the everyday struggles are handled, how the sleepless nights turn into exhausting days, and how the smiles on our children’s faces make everything right.

Dreamcatcher families have been doing all this and more for each other for ten years. And even though the economy is kicking us in the behind, we will continue to do it for another ten years and longer. We are watching our children grow into fine adults. We are welcoming new families with young children, and we are rejoicing in the successes of our adult children. And, we are doing it together.

I am grateful for the friends I have made through Dreamcatchers, and grateful that such an organization exists. Here’s hoping and praying that we continue to grow our organization so more families can feel that connectedness.

Happy Anniversary!

Today, Mr. Obama will sign a proclamation celebrating the 19th anniversary of the Americans with Disabilities Act (the exact date is July 26th for the anniversary).

So while you are eating your anniversary cake, read the statistics below from the U.S. Census Bureau. What? You have no cake? Well, there is a great recipe at the end of this post that will make a relatively healthy, very easy, and very yummy cake. It’s perfect for enlisting the aid of your children, regardless of their level of ability.

41.2 million - Number of people who have some level of disability. They represent 15 percent of the civilian noninstitutionalized population 5 and older.

6 percent of children 5 to 15 have disabilities.

12 percent of people 16 to 64 have disabilities.

41 percent of adults 65 and older have disabilities.

15% - Percentage of females with a disability, compared with 14 percent of males.

11 million - Number of disabled people 6 and older who need personal assistance with everyday activities. This group amounts to 4 percent of people in this age category. These activities include such tasks as getting around inside the home, taking a bath or shower, preparing meals and performing light housework.

3.3 million - Number of people 15 and older who use a wheelchair. Another 10.2 million use an ambulatory aid such as a cane, crutches or walker.

1.8 million - Number of people 15 and older who report being unable to see printed words at all or were blind.

1 million - Number of people 15 and older who reported deafness or being unable to hear conversations at all.

2.5 million - Number of people 15 and older who have some difficulty having their speech understood by others. Of this number, 431,000 were unable to have their speech understood at all.

16.1 million - Number of people with limitations in cognitive functioning, or who have a mental or emotional illness that interferes with daily activities. This group comprises 7 percent of the population 15 and older. This included 8.4 million with one or more problems that interfere with daily activities, such as frequently being depressed or anxious, trouble getting along with others, trouble concentrating and trouble coping with stress.

13.3 million - Number of 16- to 64-year-olds who reported a medical condition that makes it difficult to find a job or remain employed. They comprise 7 percent of the population this age.

46% - Percentage of people 21 to 64 having some type of disability who were employed in the past year. The rate ranged from 75 percent of those with a nonsevere disability to 31 percent with a severe disability. For those without a disability, the employment rate is 84 percent for the same period.

59% - Percent of people 21 to 64 with difficulty hearing that were employed. The corresponding percentage for those with difficulty seeing was 41 percent.

48% - Percentage of people 21 to 64 with a nonsevere disability who work full time. This compares with 63 percent without a disability and 16 percent with a severe disability.

$2,250 - Median monthly earnings for people 21 to 64 with a nonsevere disability. This compares with $2,539 for those with no disability and $1,458 for those with a severe disability.

$2,252 - Median monthly earnings for people 21 to 64 with difficulty hearing. The corresponding figure for those with difficulty seeing was $1,932.

12% - The poverty rate for people 25 to 64 with a nonsevere disability. This compares with 27 percent for those with a severe disability and 9 percent of those without a disability.

$28.2 billion - Amount of compensation veterans received for service-connected disabilities in fiscal year 2007.

98.5% - Percent of transit buses that were ADA lift- or ramp-equipped, as of 2006. This represents an increase from 61.7 percent in 1995.

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Pineapple Angelfood Cake

1 package angel food cake mix
1 can crushed pineapple in water -- 20 Ounce Can

1. Combine both ingredients in large bowl.

2. Mix on medium speed with electric mixer.

3. Bake in accordance with cake mix box.


If you cut the cake in eighths the following nutritional information apply:

Calories: 204.7
Fat grams: 0.2
Fiber grams: 0.2

W/W Points: 4

YOU CAN ALSO MAKE IN CUPCAKES (MAKES 24 CUPCAKES) and THE FOLLOWING NUTRITIONAL INFORMATION APPLIES:

Calories: 68.2
Fat grams: 0.1
Fiber grams: 0.1

W/W Points: 1

Thankful Thursday

Today I am thankful...

• that it is Thursday and tomorrow is my last work day this week. It's been a rough work week...


• that Mr. Baldwin, my next door neighbor, is still with us. His brain cancer is progressing rapidly, and he just wants to 'go'. I feel selfish wanting him to 'stay'.


• for the wonderful sweet, juicy watermelons that are in season right now. I can eat a healthy fruit and feel like I am eating dessert


• for the Dreamcatcher event scheduled for this Saturday. Dreamcatchers is a support group for parents across our state who have a family member with deafblindness. I'm looking so forward to seeing our friends again!


• for Ashley's great mood this week! Her ear infection has been treated and she is one very happy camper


• for Nancy Q., a vocational counselor from our state's Department for the Blind. Nancy met with us this week and has some great ideas on how to help Ashley figure out how she wants to spend her adult working life.


• that Chip likes to cook dinner on the grill for us! He has done it twice so far this week, and probably will again tonight


• for tomatoes, tomatoes and more tomatoes! My vines runneth over, and my freezer is getting full. It will be a good winter since it has been such a good summer!