Yesterday, we drove up to Palm Coast. It is a pretty coastal town somewhere south of St. Augustine. It was cold here yesterday...in the fifties...that's cold for this time of year in the Sunshine State. It's Spring Break time. When Annie and I go to the market, or Home Goods, or Target...we play spot the tourist. We are wearing turtlenecks...they're wearing flip flops and shorts. It happens every year right around this time when the weather turns a bit nippy!
Anyway, we checked in and were pleasantly surprised when they upgraded us from a one bedroom to a three bedroom suite. It's crazy...and bigger than our house! Three bathrooms...four t.v.'s...crazy!
Annie picked her room...we bunk together because we read and color after Mr.MW goes to sleep.
...a nice king bed with an ocean view.
Mr.MW checked out the kitchen.
Me? I go right for the balcony...every time...to check out the view. It will do nicely.
Too cool for the pool...but, there is also an indoor version.
We put Daddy in here...Annie checked on him a few times before she finally went to sleep.
But...we still have room for more...this room is still available. Come on down!
They even brought us cheese and crackers to welcome us! Did I tell you how much I love cheese?
Thank you for the lovely comments many of you left on my last post. Your kind words touched my heart. I tried to respond to each comment, but a few got by me. To all of you, I send a sincere and heartfelt...thank you.
This is my favorite photo of our family. It was taken a few years ago in front of The Orchard House. This was the home of Louisa May Alcott. It is located in Concord, Massachusetts and it is where she wrote Little Women.
This was a wonderful day, but the reason it is my favorite is because it is a true picture of our Annie...smiling, loving life, wringing pure joy from the moment. That's my girl!
Today, March 21st, is the day the Down Syndrome community picked to celebrate, inform and advocate for D.S. Why? Because Trisomy 21 means an extra chromosome...three rather than two on the 21st gene...3/21. They do not know why that extra, perfectly normal chromosome causes all the trouble that it does. It happens at conception.
We are so fortunate that Annie is healthy. She was diagnosed with two heart defects when she was four months old. They resolved on their own and, though she still has a heart murmur, she did not require surgery...for which we are most grateful.
(Those are real chickens in that basket!)
We have made decisions along this journey that were difficult, but we hope were the best for Annie. Annie has a tooth that is behind the others. We chose not to put braces on her because they would have had to stretch her pallet. We worried that that change to the roof of her mouth would alter her clear speech. Not to mention the pain (I wore braces, lots of pain!) and the fact that when Annie felt her first loose tooth she tried to remove it herself...with a spoon. She came to me bleeding, with her tooth perpendicular to her gum saying,"Take it out!". After this I imagined what she might do to all the hardware involved with braces.
We have known people who have had their children's tongues reduced, eyes altered, cheek pads slimmed down, given them growth hormone injections, removed tonsils and adenoids...for reasons we cannot comprehend. Annie did have eye surgery when she was four for strabismus..."lazy eye". We tried glasses and when they did not strengthen her eye, we opted for surgery. Without it, she could have lost the use of that eye. It was a day surgery, and she went to ballet class a day later. We moved when Annie was two and while packing I found a couple of tiny pairs of glasses hidden in outrageous places..my girl was an expert, at the age of two, at hiding and destroying glasses! We went through many, many pairs!
It is a life altering experience, having a child with special needs. It has changed our lives in ways too numerous to list here. There are difficulties and there are blessings. We have had dark days, shed many tears and, most assuredly, asked why. But...we have also laughed till our sides hurt at what we call Annie-isms, shed tears of joy and delighted in the smallest accomplishments. The stereotypical image of the happy, sweet child with Down Syndrome is inaccurate. People with D.S. are as diverse as the rest of use. We are fortunate that Annie is extremely happy and sweet, but she can also be stubborn and unrelenting...just like the rest of us.
This post is getting way too lengthy, but I hope you will read the narrative essay below written by Emily Perl Kingsley. We met Emily and her late husband, Charles, and their son Jason, who has D.S., many years ago. Emily is an Emmy Award winning writer for Sesame Street, but those of us within the D.S. community know her for these words...
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Annie and I have been busy this morning. We always do our best work while still in our jammies.
We decided to pull out all the Easter decorations we haven't seen in years.
This dapper gentleman is the creation of my very talented friend. Three of us use to do shows together back in the '90's and people would flock to our booth just in hopes of snagging one of her creations. The detail is unbelievable!
All of the details were made and painted by hand.
We also pulled out my Mugwump Woolies eggs and carrots.
The past few years I have limited my Easter decor to my German candy container rabbits...this year we decided to let it rip and go big with the bunnies!
Mr. Rabbit's cut-aways with tiny chicks hand painted on the tails. Annie is enjoying our trip down Memory Lane!
When you grow up attending parochial school as I did, March 17th was a big, big day. Various shades of green appeared on blue uniforms, grey blazers...and black habits...it was a day of celebration for the nuns who taught me! I have no doubt that their evening meal was a "boiled dinner" complete with a mug of green beer. Yes, the good sisters imbibed...I've seen it with my own eyes!
I have wonderful memories of those days spent with these good women. Much maligned, the nuns I encountered were fun, and kind, and excellent educators. They ran tight ships. The elementary school I attended in Northern Virginia had an enrollment of twenty two hundred...that's a lot of kids to keep in line! Maybe someday I'll share with you my stories from my boarding school days. I "lived" with seven wonderful nuns and forty nine other girls, in a beautiful old mansion turned school, in the lovely old city of Lynchburg, Virginia. It was magic!
Beanie O'Greenie is a St. Paddy's Day staple at our house...he always makes an appearance.
Silly napkins are also part of our celebration.
I sent my husband off this morning wearing a Kelly green tie with navy dots. I shamed him into it, saying his Irish mother was looking down and would be very disappointed were he not to show his heritage this fine morning. He smiled and complied. As with any holiday, Annie is excited and in the festive mode...she's all about the green today!
However you choose to celebrate...have a wonderful day!
We've had a couple of tough weeks when it comes to modern conveniences. A dead hot water heater started the ball rolling, and roll it did. We went from old water heater...located in a very bad place...to new heater with a water softener and a new location. From there we went to removal of new water heater and water softener back to old location and new copper pipes (yikes$$$) and a carbon water filter instead of a softener. The original electric panel was outdated so that was replaced as well. Our wonderful neighbors let us "borrow" some volts so Annie was entertained during the no electricity day...we ran those heavy duty extension cords from their house to ours so she had her dvd player to watch "Raymond". We have wonderful neighbors and we all take good care of one and other....we are truly blessed.
The heating mess involved attic access. Our attic, I am embarrassed to say, is a colossal mess. The fellow who originally came and "sold" us the job told me it would be no problem getting up there and through the boxes of Christmas, Halloween and various useless junk. He said his guys could work around the stuff...they couldn't. He was wrong, it took lots of time to relocate all the boxes....meaning they brought it all down into the garage with me helping. It also took a lot of time to access the dead heater through Annie's closet rather than tear up the tiger maple counter in the laundry room where the heater is located...it took four hours just to get the old one out. The guy was pretty much wrong about the whole job. The plumbers...the guys working thirteen and a half hours the first day so we would have hot water...they were wonderful...my boys.
They also had my back when the bad sales guy made an appearance after I told the dispatch operator not to ever send him back . He came back on his own and tried to get himself out of the hot water he was in with the head of the company, the guys installing, me and Mr.MW. I literally told him to get out of my garage...it took three times before he complied..then he sat in his car and sulked. He's been "taken care of" by the head of the company. It seems he has botched jobs before this one.
The whole ordeal was exhausting, but it turned out fine in the end. We have a new water heater, new pipes, a carbon filter that I love, a new, safe and up to code electrical panel...and a cleaned out attic (carloads were taken to the Salvation Army)...and I didn't get taken to jail for assault.
And they are coming today to fix this one little remnant of the job...
...a little hole in the back of Annie's closet. Sweet fancy Moses!!!
p.s. The electrician was explaining something to me about volts and wires and stuff and seemed to think I knew what he was talking about. I told him the only first hand experience I'd ever had with power was as a teacher walking into a room and having kids sit down in their seats and get quiet.
My white slipcovers are in the wash as I write this. It's best to get them out of the dryer a bit damp as they go on more easily that way. My bunnies are chomping at the bit to escape their hiding places and welcome the springtime. It will be fun to play in my house after all the "excitement"!
This little fellow is giving me the stink-eye, he's so weary of being in the cabinet looking out at freedom.
Hope you all are having some warmer weather. Our weekend was so gorgeous it lifted our spirits with it's beauty!
Enjoy the day,
Welcome to my new followers...I am so happy to have you come by. I'll be catching up with all of you this week.
March came in like a "lamb" down here in the Sunshine State. This antique chalkware lamb is aged and worn in a perfect way...he has polka dots!
I love polka dots! In most circumstances, polka dots look contemporary and new. I found this wonderful Susan Winget fabric that has a more prim feel to it and I knew it would look great in my window.
A stack of early breadboards serves as a pedestal for my lamb.
Brown and cream...I love it! Up close the dots look more like spots of paint and the brown is different shades.
More dots! I found these old limestone water filtration balls in Thomasville, Georgia. The early berry scoop holds berries and bread knives.
I always have ivy plants in my home...they thrive in my sunny windows....especially in the baths with all the steam.
Dots...old brown worn wood...ivy green...antique whites...these are the colors in my March Kitchen Window.
How prophetic that I chose this month to decorate my window with reservoir filtration balls. I've had plumbers in my house fourteen hours a day all week. All is well now...Annie weathered the disruption like a trooper...Mom, not so much. I'll be regrouping over the weekend...Come Monday the electricians will be here to rewire...sigh.
Have a great weekend! I've been trying to visit you all...hope all is well with you...especially your pipes and wires!