Friday, December 11, 2015
In my daily travels, I've made friends at the local markets, bakery and pharmacy. At one of my stops there is a lovely woman whose husband brings her into work every day she goes in. He even helps her set up before going home. They are an old school Italian couple with grown children who do everything together. I speak with her husband often and the exchanges are for the most part short and concise. We discuss anything from the weather to families to holiday traditions and even politics and religion. Nothing is off limits. Most of the time we laugh, at ourselves and at each other. I walked in one morning at 6am, with furry slippers, pajamas and disheveled hair, which was sticking up all over the place (the joy of curly hair). He laughed so hard when I walked in and I was doubled over laughing by the time I went out the door.
One morning a couple of months ago he told me he had cancer. After extensive testing it was found to be stage 4, involving multiple organs. Our conversations of late have been light and we both tread carefully on the illness talk, especially as it is particularly upsetting to his wife. This morning I asked him how he was doing while she was not within hearing distance. He said they told him he had 9 months. He had a CAT scan last week and the doctors were very encouraged at his progress. The two types of chemo he has been receiving are evidently working. He looks great. We talked a little about food and diet and as I got ready to leave, he kissed the back of my hand and said "I really enjoy our conversations." I held my tears until I was in my car.
It is bittersweet, so happy to hear his treatment is going better than expected, but knowing there is a clock ticking. What moved me was knowing that I am responsible for one of his smiles on the days I see him. I think we all know there are people we make smile, but we rarely hear them actually express it. We all should thank those that make us smile. It is such a fantastically uplifting experience. He was the reason I smiled all day today.
Saturday, December 5, 2015
"We're kicking off our fun old fashion family Christmas by heading out into the country in the old front-wheel drive sleigh to embrace the frosty majesty of the winter landscape and select that most important of Christmas symbols." - Clark Griswold, Christmas Vacation.
We normally put our tree up the day after Thanksgiving, but this year, due to extremely mild temps, we decided to get our outside decorating done first.
This afternoon, we will make the venture out to a cute little tree stand, a mile and a half away, to choose our tree. We'll cram it indoors, plop it in the stand and hopefully secure enough that it doesn't fall over, as it has every year.
A couple of years ago, I wrote this poem, with a little help from my son. I'm quite proud of it as I am no poet, and I thought I'd share it again!
Twas the Week Before Christmas... (2013)
Twas the week before Christmas and all through the house
My sons and I decorated, with no help from my spouse.
The stockings were hung on the rail by the stairs
The blankets and pillows decorated the chairs.
Unfortunately we tied the tree to the wall,
Because after a few days of tipping we feared it might fall.
Part of the village was set up under the tree,
And some even sat on the table near the TV.
The nutcrackers guarded the TV remotes.
To see the outside, we had to put on our coats.
Santa and Mrs. Claus looked out below.
At Rudolph's nose glowing right there in the snow.
A family of reindeer stood in the side yard.
Where at Halloween, there was a graveyard.
A moose and a wagon out front with a light.
The beautiful decorations lit up the night.
A snowman will welcome Santa, that jolly old elf.
When he comes here on Christmas all by himself.
But no, he won't be alone this year.
He'll have his sled and all the reindeer.
And after he leaves, and rides out of sight,
Merry Christmas to all, and to all a Good Night!
(this was composed with a little help from my 11 year old son)
Wednesday, December 2, 2015
Apparently, I have taken a hiatus from my blog since this past spring. There was a ten day trip to Washington, DC then a perfectly blissful summer where other than relaxing and being a Mom, nothing much else got done.
I was also able to spend some time immersing myself in recreational reading. I had denied myself this little pleasure in the past, but more than made up for it these past few months, finding great enjoyment from Janet Evanovich's Stephanie Plum series. They are quick easy reads and laugh out loud funny.
And now all of a sudden we are in the middle of the holiday and political seasons. The politics I can seriously do without. I have a hard time even listening to the current lineup - I think they're all out of touch and in some cases certifiably crazy. My heart is heavy over the recent attacks all around the world. While I am an admitted Facebook addict, I find myself tuning out the political and depressing posts and gravitating to the funny pages with inappropriate jokes and find myself getting quite a kick out of some of the more naughty Elf on A Shelf ideas.
Our outside decorations are up and I now have begun the task indoors which I hope to complete in the next couple of days.
And I am still in the throes of writers' block although I'm not really a writer. I find my mind wanders to the fact that my older son will be starting high school next year and he needs to make a decision as to where he will go, and my youngest son will be 13 next week! Where has the time gone?
So as Christmas has thrown up in my living room, I will have to excuse myself to finish up some decorating!
Friday, June 5, 2015
My husband and I decided at the beginning of the school year to sign the boys up to participate in the Close Up program. As stated on their website, Close-Up's mission is, "Close Up informs, inspires, and empowers young people to exercise the rights and accept the responsibilities of citizens in a democracy."
He and I both participated in Close Up in the late 1970's, a few years after it had been established. We felt it would be a positive experience for the boys as well, especially given the fact that both David and Michael love history and politics.
Due to our food allergy issues, I arranged for my husband and me to go as well, requesting a room with a microwave and refrigerator, so I would be able to prepare food they could eat. We also decided to extend the trip so we could see a little more of Washington, DC since we were going to be there anyway.
Since the Close Up program took care of the hotel arrangements from Sunday night through checkout on Wednesday, I had to make reservations for the Friday and Saturday night before the program began and the Wednesday, Thursday, Friday night after it ended. We also drove instead of flying. I was a little apprehensive about this trip. This is the first time we've gone away where arrangements were made by someone else.
I have found Trip Advisor to be extremely helpful in locating hotels. While I usually book directly from the hotels' reservation desk, I scour the reviews and various hotels in an area. The nights we were looking for were mostly booked for several sports events and college graduations in the DC area. Add to that the fact I needed a microwave and fridge at a minimum. The Close Up hotel was fully booked so I found a room at the Hilton Garden Inn in Silver Spring, Maryland, in close proximity to the hotel Close Up had booked. Upon making the reservation, I noted we were driving and would arrive in the wee hours of the morning. This detail was included in the email confirmation I received. In addition, I called the hotel two hours before we left to remind them it would be a very late check in, most likely around 2 or 3 am, and a very friendly receptionist said, "thanks for reminding us, I will make sure everyone knows you'll be coming."
We drove at night and arrived at the Silver Spring Hilton Garden Inn at 3am as expected. What we did not expect however was being told we had no room, especially in light of the fact that I confirmed less than 12 hours before we arrived! There was a cooler in the car with some food and we had been driving all night. To say I was irritated would be an gross understatement. The poor man at the desk wanted to speak with my husband and not me and to be perfectly honest, I didn't want to speak with him either!
After a couple of phone calls, the guy at the desk found us a room in Bethesda's Hilton Garden Inn about 9 miles away. His directions however were sketchy at best and a 15 minute ride turned into an hour. By 5 am we were checked in, car unloaded and in bed. And so began our Washington, DC adventure...
|Hilton Garden Inn, Bethesda, MD|
Monday, May 25, 2015
Tuesday, May 5, 2015
This was my first A - Z Challenge. I had considered it the prior two years, but didn't think I would have been able to complete the challenge. This year, on March 31, I decided I would give it a shot. I registered my blog, changed the settings, then wrote my first post A is for Autism Awareness Month. Being a personal, lifestyle type blog, I picked my A topic because it applied to me and my family. I began jotting down ideas for the rest of the letters, and figured my theme would be whatever grabbed my attention. However, one of the A to Z admins visited my blog and left a comment that autism was a great topic and she was glad I chose it. So I my theme morphed from a little of everything, to autism and I revisited and revised my list.
I read many blogs over the course of the challenge. I picked some from the list of participants, visited those that commented on my blog and also some that commented on blogs I also commented on. I picked up some new followers and am likewise following over a dozen more.
There are just too many to list as favorites. I enjoyed a variety of different blogs from food, pottery, music and movies to supernatural, fairy tales, and several writers' blogs. Several of the A-Z Challenge admins visited my blog with words of encouragement and I appreciated that greatly. A special shoutout to my friend Courtney over at Maui Jungalow who had tried to get me started in the previous years. I really enjoyed her challenge theme of living on Maui. It really opened my eyes to the fact that the grass is always greener...
I know it got crazy, especially towards the end. I was excited to meet some of you via comments and the time constraints made me that much more grateful for the time you took to comment on my posts and visit my blog.
I have to admit the challenge was more fun than I thought and I look forward to participating next year.
Thursday, April 30, 2015
On the 26th day of the A - Z Challenge, Z is for Zoo
Roger Williams Park Zoo is located in Providence, about 10 minutes or so from where we live. In the early years, this place was my salvation. Both David and Michael were great in a stroller and we would come here at least 4 days a week. Sometimes my daughter would come too and we would all have a blast.
|My daughter and sons|
I enrolled David in an educational program Roger Williams Zoo offered to toddlers and we would go once a week for a morning session learning about one of the animals. We spent time in a classroom type setting and then would visit the animal we learned about. David loved it!
In the fall there is a Jack-O-Lantern Spectacular featuring over 5000 lighted pumpkins with different themes every year. The display is fabulous and we usually go twice during the month of October.
The early school years included many field trips to Roger Williams Park Zoo which I chaperoned and it was always a great time.
The zoo also features a popular butterfly exhibit during summertime. This year during April vacation there was a preview of the exhibit. A butterfly landed on Michael, then went to me, then to David. I hear it's good luck when a butterfly lands on you.
Santa comes to the zoo by helicopter every year.
The Rockettes were in town for a Christmas show when the boys were younger. Two of them came to the zoo to greet those of us who donated coats for a coat drive. David and Michael loved saying hello to them and the girls graciously posed for a photo! Michael was enthralled.
|Mikey looked like the cat who swallowed the canary! David was pretty happy too!|
There was a dinosaur exhibit one year at the zoo. I took the boys and Michael took off running. I was panicked, but as I was going through the trail looking for him, that little shit was peeking around the corner laughing. As I went after him, he ran. Then he stopped, peeked around another corner and laughed. Finally I got him and strapped him in the stroller.
The zoo was one of the few places I felt comfortable taking the boys when they were little. It was only a few minutes from home and most of the time they were fine in the stroller. We never tired of going there and we even visited last week during April vacation. They are now introducing some programs where you can pay to feed some of the animals. I think we'll have to try it!
Thanks for visiting my blog during the A-Z Challenge. I have enjoyed meeting and 'chatting' with some of you and appreciate the comments and follows!
Wednesday, April 29, 2015
On the 25th day of the A - Z Challenge,
Y is for Yesterday
"Yesterday, all my troubles seemed so far away
Now it looks as though they're here to stay
oh, I believe in yesterday"
It seems like yesterday that we had two beautiful little babies with all the hopes and dreams that new parents have.
It seems like yesterday that we spent hours in the emergency room when David had a severe reaction to dairy and we learned about his food allergies, which Michael later shared.
It seems like yesterday when we received the devastating diagnosis of autism for our sons.
It seems like yesterday that I was up driving around all night so that Michael would finally go to sleep, stopping at an all night Dunkin Donuts for an iced coffee and later at a construction port-o-potty so I could pee.
It seems like yesterday that we began this 'autism' journey, not even knowing what autism was, and having to navigate through immunizations and education.
It seems like yesterday when David finally answered me instead of repeating everything back to me.
It seems like yesterday when we planned our first vacation and stressed out wondering if the boys would flip out being away from home.
It seems like yesterday when Michael would melt down practically every day for some reason or another.
It seems like yesterday when I was pretty much home-bound because I wanted to avoid the embarrassment of being out in public if the boys acted up.
It seems like yesterday when I would drop Michael off at school and listen to his cries and screams as I walked out the door.
It seems like yesterday when we rented our beach house the first time.
It seems like yesterday when we first ate out together as a family in a restaurant.
It seems like yesterday when the boys got awards at school for their high scores on the NECAP tests.
It seems like yesterday when David was appointed to Student Council and later, Michael was too.
It seems like yesterday when we took NY by storm, went to the Macy's Thanksgiving Day Parade and Michael navigated the subway system and got us around.
It seems like yesterday when both boys made the High Honor Roll at their middle school.
It seems like yesterday when they were just babies and not young men.
We've come a long way from yesterday's trials and successes and are looking forward to many tomorrows.
Tuesday, April 28, 2015
On day 24 of the A - Z Challenge X is for Xanax
Couldn't think of an X word that would have been relevant, so I went with Xanax! I don't take it. But I do know several moms that have autistic children that do. They call it their 'happy pill'. Personally, I prefer a martini!
I thought I'd lighten it up today with some of my favorite xanax memes!
Monday, April 27, 2015
On Day 23 of the A - Z Challenge, W is for What Comes Next?
When I was younger, I never knew anyone who was autistic. My only perception of autism was from the movie Rainman. Today, it seems that everyone either knows someone or has a family member that is on the spectrum.
However, when I wonder about what happens in the future, I am very concerned. My husband and I aren't going to live forever. In the earlier years, I worried what will happen to David and Michael when we aren't around. My daughter said to me a couple of years ago when she had started seeing her current boyfriend, "You know Mom, I told Tom that if anything ever happens to you and David, I would take care of David and Michael." As they are getting older, I think David will be able to be self-sufficient. I do worry about Michael, but between his brother and sister, he should be OK too.
But what about the others. Sure, some on the more mild side of the spectrum will go to college and have meaningful careers. Some will have siblings or close relatives to help out. However, there are many more that have severe issues, impairing their ability to live on their own. What will happen to them? One woman I know has a 13 year old nephew with autism. He is totally non-verbal and still in diapers. He is prone to outbursts and is uncontrollable so he was placed in a hospital program a year ago. They were told he would be toilet trained in 6 months. He's not. For all intents and purposes, he's institutionalized.
Dateline did a one hour special earlier this month where Kate Snow and the Dateline team followed the journey of two autistic boys and their families. Currently, developmentally disabled children can stay in the education system until they are 21. Once they turn 21, they are no longer eligible for state programs. Dateline reported on the 3 years after the boys turned 21 and how difficult it was for the families to get them into a good program, how the progress these kids made over the years of special education was in danger of being lost, how they families spent every penny they had to try and find constructive outlets to keep the boys from regressing in speech and social progresses. The eventual outcome for both families was relatively positive, after great personal expense to the families, but frankly I was a little disappointed in the show. I think it portrayed the exceptions but not the norm that happens to a lot of severely affected kids and their families. I read that almost 80% of special needs kids ultimately live in broken homes, that one of the parents just can't deal with the situation and they leave. At one point during the Dateline show, one of the alternatives was to place one of the boys in a program where the other autistic young adults just sat around all day and had no real structure or learning to their day. They were just put in a room to occupy their time, lost in their own worlds.
In the next few decades, as the children outlive their parents, I am very concerned as to what is going to happen to those incapable of caring for themselves and what type of care they will be able to get, if any.