Tulips & Goldfinches

We've had a week of beautiful Spring weather. It appeared suddenly, without those icky days that people like me from New England call "mud season."

There's still snow on the ground, but its melting away quickly, and soon we will be seeing little green sprouts of tulips peeking through.

This weekend, I put a Goldfinch feeder in the lilac trees outside my dining room window. There have been lots of goldfinches feeding in the early morning. As I sit and type this, I can see perhaps 25-30 of them in the trees, waiting for their turn for breakfast.

Soon, the lilac tress will be trying to push tiny buds out to the reach the warm sunshine.

I read an article once that said that people who live in a climate where there are 4 distinct seasons have a stronger grasp of the years going by, because they see the changing of the seasons, and realize better that another year has passed.

We really notice that first warm, sunny Spring day, and that nippy, cold morning in October that tells us that winter is not far away.

We have seasonal clothes, that include hats and mitts, and winter boots, and then, in the summer, shorts and sundresses.

And sometimes, somewhere in between, we have all of that stuff out at once...because today might be a sweatshirt kind of day, and tomorrow might be a winter coat kind of day.

And its usually about May before most of us tuck away the bag of salt for the walkway that sits near our front door, and replace it with soil to start the summer flower gardens with.

Its strange to me that some of you reading this have never had to scrape the ice and snow off your car window, or let it run to warm up for 20 minutes before you can get into it. Its funny that some of you think 50 degrees is cold!

As much as winter is a big fat pain the butt to those of us who have to go to work, or travel in conditions that are less than desirable, there's something to be said for taking your kids outside in the cold on Christmas morning in their pajamas to see the footprints that Santa left on the roof as he arrived the night before.

And something to be said for beautiful mornings like this, and the appreciation of a little yellow bird arriving to feed. That little feel of excitement of not having to put boots and mitts on your child in the morning to send them off to school. Turning the furnace down for the first time in months, and opening a window, even though its really too cold to do that just yet. Putting your clothes on the clothesline, although they will probably stay there all day long, and not get really dry...they will smell fabulous just the same.

For me, and a group of my friends, those tiny tulips peeking out have taken on great significance in our lives.

Many of you have read "Welcome To Holland", a short story written by Emily Perl Kingsley after the birth of her son who has Down syndrome. It talks about your life taking a different route than you expected, and how you will see the beauty of that if you slow down and enjoy what you see.

Recently, a mom that posts on our Trisomy 21 board died after a very short battle with leukemia. Anne is survived by her husband, and two daughters; the youngest little girl is just a year old, and has Down syndrome.

The ladies on the T21 board have embraced her family, and done some amazing things to help keep the memory of Anne alive.

One of those things was that many of us sent a single tulip in a vase to the funeral home where Anne rested. It was a great idea put forth by one of our Moms, and the tulip was symbolic of those of us who live in "Holland".

It was such a powerful reminder of our ability to embrace one another, and to celebrate our lives. Much more powerful than a whole bouquet of tulips; they arrived one by one, slowly building a whole army of tulips; just as we have arrived on this journey...one by one...slowly building our army, recognizing that we are walking this journey arm in arm with one another.

Strong and beautiful one by one. Breathtaking and full of awe as a group.

So...You Think You're Special...Prove It

Today, there was a story about a family of three children who were found neglected in their apartment. Their mother is a drug addict.

The youngest child is 5 years old; he was wearing a dirty diaper, and covered in lice. He weighs just 15 lbs.

He has Down syndrome.

On another message board, I’ve read posts tonight contemplating God. If there was a God, how could He have allowed this to happen? How could an all-knowing, all-loving God let this happen to our most vulnerable?

An incident such as this surely disputes the phrase that parents of children with special needs often hear…”God doesn’t give you anything you can’t handle,” “God only gives special children to special parents.”

Let’s get it straight. Right now.

You are not special because you are the parent of a child with special needs. You are not special because you are a parent of any child for that matter.

You are not special because you are tall or thin or pretty or even smart.

God has not forsaken anyone; nor has He caused anything horrible to happen to this family.

He handed this woman the opportunity to change her life. Three times. Over and over and over He slapped her into reality, begging her to get her act together; to learn a simple lesson from her children…that they deserve to be welcomed and celebrated and cherish.

The third time He sent her an even greater wake up call. A reminder that she needed to humble herself, and see this child for his intrinsic beauty.

Over and over again, He told her to smarten up, to get her act together.

Yet, she chose not to.

You are special simply because you chose to listen. You are special because, when given an opportunity to see God in His finest glory, you have done that, simply by looking in your child’s eyes and seeing perfection.

You chose to sacrifice when it is necessary and celebrate when it is apparent.

You chose to care for your children, to advocate for them; to nurture them.

Simply bearing a child does not give you the right to be special. It is not a gift given to you freely, without responsibility. You have to earn it. Every single day.

It won’t always be easy. But in His infinite wisdom, He will teach you lessons even when its difficult.

My heart aches for the children I read about today. I pray that these children will find homes where their parents have listened and heard His message…I hope that today is the first day of new lives for them.

Although these are lessons that no child should have to learn, I pray that these children can become messengers; that somewhere someone is living next door to another careless mother and that they will make that call that will save those children too.

I hope that some social worker who may tonight be contemplating the safety of a family will chose caution, and lead those children to a safe spot.

I hope that some family who has been praying for a baby with Down syndrome will hear this story and become the hero for this tiny little boy who was found today.

Perhaps this story will shake the heart of someone who is tonight contemplating abortion of an unborn child with Down syndrome, and she will realize how precious all human life is.

Perhaps it’s a reminder for all of us that we need to pay attention, and to cherish the gifts we have been given.

Choose to be special. Please.

Dance!

I hope you still feel small
When you stand beside the ocean
Whenever one door closes,
I hope one more opens
Promise me you'll give faith a fighting chance
And when you get the choice to sit it out or dance
Dance!
I hope you dance!
I hope you dance!

Those are the lyrics to LeeAnn Womack's song, "I Hope You Dance." Its a beautiful song, and I'm sure most of you have heard it.

To me, it is a song about embracing life, and living it to its fullest. But, I also interpret it as a song about perspectives.

I've told this story many times when I've spoken in public about Down Syndrome, or when I've given a "pep" talk to Dakotah fretting about what someone thinks of her.

~~~~~~~~~~~~~

My grasp of "Perspectives" changed very much the Christmas before Paige was born.

I was waiting on amnio results to see if she had Trisomy 18; a fatal chromosomal anomaly that would explain why doctors could not find her stomach or kidneys through ultrasound.

I was shopping for toys for Dakotah for Christmas at Walmart. It was the year that the Bouncing Tigger was so popular.

I saw the toy, picked it up, pushed it so it would bounce and sing to me, and giggled a little at how silly Tigger was.

I moved on to a few other toys, and I see a young man in his early 20's come up to the Tigger and do the same thing I did...push it, watch it dance, giggle a little.

Two teenage boys walked by and laughed at the young gentleman looking at the toy. Most likely, if they had seen me looking at it, they wouldn't have given it a second thought.

But, the man had Down syndrome...something that in one second had changed the teenagers perspective of that man. I was a Mom looking at toys for my kids...he was...well, different, and they were snickering at a grown man looking at a baby toy.

Right then it occured to me that he wasn't at all different than me...perhaps he was looking to buy toys for a niece or nephew that he loved dearly. Or perhaps, he had just stopped to smile at a toy.

I never spoke to the young man that day, but I have carried him in my heart for 9 years now. Without a word, he taught me a lesson that I wish I could have learned years ago, when I was a teenager, and like Dakotah, always worried that someone was looking at me, judging me, picking apart what I was wearing or how my hair was.

Perhaps, like LeeAnn's song, he had never lost his sense of wonder...what a beautiful thing that would be!

It was a lesson that has served me well since Paige was born. At the time, the lesson I thought I had learned was that I would give anything just to have the opportunity to have my baby live...and it would be 3 more months before I knew if that were the case or not.

Now, the lesson has evolved. Although most people that we encounter stop and speak to Paige, and tell me how beautiful she is, and have a kind word to share with me, like all new moms of a child with DS, there was a time that I was always so conscious of her having Down syndrome....where I was sure everyone was checking her out just for that reason.

But, I've never once felt uncomfortable or "different" when someone notices Paige...whether or not they notice her because she has Down syndrome is irrelevant to me. My heart swells with pride and I'm always so in awe of her beauty, both inside and out.

Paige never passes her reflection in a mirror or a doorway or a window without stopping to make faces at herself, or to smile and clap or make some silly gesture in the mirror just to see herself do it. She never hesitates to wave at people in the mall, and say "hi"...and she's pretty persistent...she will not be ignored...so you just better say hi back or get used to hearing her say it, lol.

When music is playing at church or in a store, she loves to hum along, and doesn't care who is looking.

And I wouldn't have it any other way...

Not only do I hope she dances, I am going to stop and dance right along with her.

In 20 years, if you see a short, chubby gray-haired lady dancing with a young lady with Down syndrome to the music in an elevator, snicker all you want...our hearts will be too full of joy to even notice.

Mission Impossible

So I have determined that it is completely impossible for me to write in this blog with my family in the house. I sat down at this computer a full hour ago to write a bit about Paige's speech evaluations.

Since then, Paige has come to the computer about 30 times, wanting to play Teletubbies & Caillou at PBSkids.org. Dakotah has had a hair crisis that resulted in me having to leave the computer to go and braid her hair.

And Wayne has been looking for two cd's that he needs to take on a service call with him. And of course, I, having a uterus, which is the ultimate location device, am supposed to know exactly where these two cd's are.

Bear in mind that the man literally has thousands of cd's in our house...some burned, some not. Very few of the burned ones are labeled. Some are in cases, some are just stacked. When the stacks of them overtake my kitchen table, I simply pile them up and put them in the backroom for him to organize "later."

He found one cd. And then promptly walked out the door without it in his hand. I ran after him, yelling his name. He had the van door open, how could he have not heard me? How did he not jump when I banged on the back window? And how did he not see me trailing down the sidewalk waving my arms furiously in the air?

God help anyone on the streets today!!! Hopefully you aren't carrying the magical cd that makes you invisible to large men driving minivan's.
~~~~~~~~~~~~~~~
Tonight is another birthday bash for Paige, so I'm off to prepare for that.
Oh, and the Peanuts picture above? No reason...it just makes me happy to look at it! :)

Happy Birthday Miss Emma!!

Our family has been blessed not only with Paige, but with another special little girl with Down syndrome named Emma!

Emma was born the day after Paige's 4th Birthday; and we call her the "best birthday gift Paige ever got."

Emma is a sweet little girl, who is so funny and smart! She is just turning 5 years old today, and can already count to 12, and recognizes many letters of the alphabet and the sounds they make.

Emma was born with a heart defect, but now she is a busy, healthy girl, who always has time to stop for a kiss and a hug. She has the cutest little voice, and everyone who meets her falls madly in love with her.

She just got back from a trip to Disney where she went on a cruise and to Disneyland. She had lots of new experiences, and handled all of them like a trooper. She loved meeting all of the characters, and gets excited every time she sees the picture of her with her pal Mickey.

This picture is of Paige and Emma at school yesterday, celebrating their birthdays. The beautiful castle cake they are enjoying was made by Emma's mom, one of my dearest friends.

When Paige got the gift of Emma for her birthday, I also got the gift of Camille as my friend. She is an amazing woman...strong and compassionate and caring. Not only with her own children, but with her friends and extended family, she is always there for them.

I am in awe of her ability to always see the good in people; to always "walk on the bright side of the sidewalk." She has touched so many people's lives, and made such a difference in this world.

I am very blessed to have her as my friend, and to have her precious little girl to love as well.

Happy Birthday Paige!!

Today is Paige's 9th Birthday! What a big girl she is becoming! She looked so pretty heading off to school today, all dressed in pink. I would post a picture, but I need Dakotah here to get it from the camera to the computer!!

Its such a happy day. Paige has been really healthy this year, and has gained more strides in school in the last 9 months than she did in the previous 3 years combined.

She's got the greatest little personality...she's so friendly and happy all the time. This year, she has learned to use the computer, and doesn't give us a break on it for a minute. As soon as we sit down, she comes over and wants to play on it. And she knows where to go to find the games she likes; she will point at the monitor to prompt it to the next screen, and can play lots of games at pbskids.org.

Lst night, she lost a tooth!! That's a big celebration for us, because her permanent teeth came in behind her baby teeth in the front, and she had to have them all pulled. Luckily, her permanents fell right into place, and she has beautiful teeth now.

We didn't find the tooth, just discovered a bit of blood around her mouth, and upon investigation, noticed it was gone. Most likely, she really got some calcium in her diet last night!

Today she has a day-long speech evaluation at school. Hopefully, we will see some results from it, and get some good suggestions...we need to get this kiddo talking!!

In Memory of My Dad July 27, 1932 - March 22, 1998

My father died 8 years ago today, the day before Paige’s first birthday. It was 1998, a year that would prove to be trying in very many ways.

That year, my family would live through an Ice Storm that left us with a young baby, and a 4-year old, in very cold Ontario, with no power for 9 days. We would watch Paige get progressively sicker, having a horrible 10-day bout with rotovirus, and then suffering from pneumonia over and over again, until we were to finally realize that her esophageal problems were not over…that we hadn’t had a “miracle fix.”

Although we didn’t know it, we would see 4 or 5 more surgeries for Paige in 1998.

And, Wayne and I nearly saw the end of our marriage that year.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The previous October, my father went to see his family doctor, because he was “lame” on the right hand side of his back. Thinking he might have a kidney infection or something similar, the doctor just assured him he was getting older (he was 65), and that working outside in the cold weather wasn’t as easy on his body as it used to be.

Not one to ever visit a doctor unless he was forced to, my dad repeatedly went back to have his back checked. Never did the doctor recommend so much as an x-ray.

Then, that November, my father did something very uncharacteristic of him. He walked in the door on a Friday afternoon and announced he was retiring. That day. He had been talking about it for a couple of years, and always had some excuse for not being ready for it just yet.

He wasn’t one to make such fast decisions; he was dedicated to his job, and would have never left anyone shorthanded.

He also was the caretaker of the lumber mill where he worked; so his house was part of his job at the time. He still owned the house that I grew up in, but had to move out of the house he and my mother were currently living in as soon as he retired.

So, they packed up everything, and by December 1, they were driving across the country in their Winnebago. Their first stop was Florida. On the eleventh day of their road trip, my father woke up, unable to get out of bed. He told my mom that he felt like he had been sleeping on a football, and could not move.

When he rolled over, there was a large mass on his back. My mother, and my aunt and uncle who were also in Florida with him, took him to a local hospital to be looked at.

Immediately the doctors wanted to biopsy the mass. We knew before the short surgery what was happening.

Before my father even woke up in recovery, my mother was told that it was a metastasized tumor that had eaten through his ribcage.

In the space of a few hours, she was being told to take him home to die.

My sister had just seen the death of her mother-in-law; having taken care of Jane in her home for months as she too passed away from cancer…to have this to shoulder one more time seemed more than any human could, or should, have to ever take.

For my sister, too, it would be a terrible year; she would become quite ill and require surgery for many malfunctions happening in her body. Late one night, on the way home from a friend’s house, she and her son would hit a telephone pole and total their car. Miraculously, they would both survive, although she suffered numerous injuries because of it.

And, I suspect that her marriage struggled as mine did that year too. Both of us were overwhelmed with our lives, tired of “faking it” and tired of trying to be heroes.

My sister and brother-in-law flew to Florida to drive the Winnebago back home for my father. The trip home was excruciating for Dad…every bump caused him horrible pain.

When they arrived home, I was able to go down and visit him. He was optimistic about his health, having just the year before seen Jane die of cancer. She had survived about 5 years with it, and that seemed to be what he clinged to…those 5 years.

In early January, we had a horrible ice storm in Ontario that saw power outages for hundreds of miles. Stores were closed, banks were closed, gas stations were closed. We were basically immobilized with no ability to access money or gas, or even food at times.

I was able to visit my father in late January, although Paige was sick with pneumonia. Because Dad had had a round of radiation to try and stop the spread of the cancer, we delayed her immunizations because they were dangerous to him. We had to be very careful about his immune system.

He got ill very fast; he lost weight so fast that he looked like a skeleton. We were told that the cancer had spread to his brain, and was so far advanced that the only treatment he would receive was palliative care.

So began the tough things that one must do to prepare for their death. For the first time in many years, my brother, sister, and I were with him at the same time.

With all of his children present, he signed a living will, saying he did not want any extraordinary measures taken to save his life. This was a tough one for me; as even iv fluids would be withheld…more than anyone, I knew that his inability to take nutrients would end his life even quicker.

He spoke very openly with me about his death. Perhaps because my mother was his daily caretaker, and they were staying with my sister at her house, he kept up more of a brave front with them. He told me that he had the easy part; he just had to die. They had to care for him, and watch it happen…that we would all have to go through the mourning process after he was gone.

Although the cancer, and some of the medications made him very fuzzy, sometimes even delusional, he spoke with great clarity about his death, and how he wanted us to go on living afterward.

Sometimes, he lost touch with reality, and would believe crazy things were surrounding him in his bed. He became a big germophobe, and was convinced that food was making him sick most of the time.

But, in his lucid moments, he would fool us, weaving a story that was totally ridiculous, and then laughing at us for believing any of it.

When a hospital bed was moved into the house, his biggest concern was whether or not it was portable…for he wanted it to fit in his Winnebago so he could keep traveling. He would sit in the dining room window, and make great plans for all of us to go to Florida with him that summer in the Winnebago. He made us promise that we would all go…all of his children, with all of their children.

He got very, very ill in March, and by the middle of the month, we knew that he would soon die. Incredibly, his body held out through so much; he lived many days without any intake of liquid or nutrition at all. He developed such sensitive skin that it became impossible for anyone to touch him, as it simply seemed to dissolve at the slightest touch.

He was so sick, that we begin to pray for God to just take him…to just rid him of this body that was causing pain that we could not even imagine.

And yet…he lived on.

On the morning of March 22, I was just putting Paige in the bathtub at home. It was the day before her first birthday. It was snowing outside, and we were expecting a foot of snow that day.

The phone rang at 8:30. At the time, no one had call display. Calmly, I walked to the phone, picked it up and said, “he’s gone.”

And he was. My father, whom I had adored so much, was gone. Relief and grief flooded over me as I listened to my sister tell me the details of his passing.

We were unable to travel because of the snow, but I begged them to keep his body so that I could see him one more time. He had asked to be cremated, and there would be no body at the service.

The next day was Paige’s first birthday. A day deserving of great celebration for a little girl who had just the year before clung so desperately to her own life.

I had ordered a cake for her at the bakery, and was going to take it with us to NH. I was more than devastated to arrive to pick up the cake and find it covered in dark colors…made for a little boy, not for a sweet young girl. The culmination of everything was upon me, and I was hurt beyond belief that someone had messed up my little girl’s first birthday cake.

I got to see my father later that day. How very strange to be sitting in a funeral home, your father’s dead body laid out on a stretcher, still in the body bag it had been removed from the house in, on the day of your baby’s birthday.

I’m glad I got to see him though, because it confirmed what I already knew. He was not there. What I saw was the physical shell of my father; the part that was sick and defective. I knew he was better now…I said to him, “You beat it, Dad…you beat it. Cancer can’t get you anymore.”

It didn’t kill him…he had killed it. He had killed its ability to feed off him anymore. He had broken free of it, and taken his beautiful spirit to a place that was much more deserving of him.

He had a beautiful funeral…just the way he would have wanted it. Nothing formal, with the Minister sharing funny stories about Dad’s life.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dakotah and Paige will never know Dad. Dakotah has a few memories of him, although most of them are of the times he was sick. She remembers the details of his illness, but I suspect most of the “memories” that she has of him are those that I have created through storytelling, and ones she has picked up listening to others talk about him.

Oh, how I wish they could know him. He had crystal blue eyes, and a ready laugh. He was a quiet man; speaking when he had something to say, and not speaking much at all when he didn’t.

He loved to read, and read newspapers front to back every single day. He loved being outdoors, and was an avid hunter when he was younger.

He adored his nephews, my sister’s children, Craig and Colin. Those boys meant so much to him, and he would have given anything to see them both graduate from college, and to see Craig get married last September.

I miss his voice the most. The way he would say “Hi, Bets” on the phone to me.

And his hands. His big strong hands. I can remember laying on his bed with him on a Sunday afternoon, when I was perhaps 5 or 6, as he tried to take a nap, and playing “catch the hand” with him…I’d try to slap his hand and pull mine away before he caught it.

I remember him only eating the brown m&m’s, because he was convinced they were the only ones that were truly chocolate.

I remember him smelling like the outdoors when he came home from work at the mill; that freshly cut tree smell.

He laughed when I laughed; we had the exact same sense of humor.

As he walked me down the aisle, he wasn’t offering fatherly advice as one might imagine him to be doing. He was asking for instructions, “so, when I get to the end of the aisle, I lift your veil, kiss you, and then I’m done?”

So much like Dad, lol…get me out of this monkey suit and let me sit on the side somewhere.

Now, he gets to have a bird’s eye view of our lives. He is with me always.

Did you ever know that you're my hero?

You're everything I wish I could be.

I could fly higher than an eagle,

For you are the wind beneath my wings.

Body of Christ...Amen. (Did you notice my dress?)

For about a year now, I have been thinking about Paige’s First Communion. For a Catholic family, it’s a very big event in the life of a little girl. It marks a very important time in her life; when she can receive Communion for the very first time.

We’re doing a little extra preparing for it; as Paige has eating and choking issues, and the reverence with which she must take the Body and Blood of Christ is of utmost important to the day.

To be honest, I’m not sure how well she will do with it. We’ve gotten some unconsecrated “practice” wafers to try and see how it goes. Our priest has agreed that the tiniest piece is all she needs to take.

But, it’s flavorless, and kind of sticky on the tongue and the roof of her mouth. And she’s not very adventurous about what goes into her mouth, meaning if she can’t identify it, she’s having no part of it.

Add to that the fact that the Bishop will be the one trying to give it to her…a virtual stranger to her.

If we find it impossible to get her to take these practice pieces, we have two options…we can offer her a bit of wine on a cloth, touched to her lips, or we can pray that she will accept the consecrated host.

Its seemingly very, very important to me that she has her First Communion, even though I have been assured by our Priest that, given special circumstances, she can take it at any time throughout her life, and will be no less a member of The Church because of it.

So, I question…is it me, am I feeling the need to prove something? Why does this matter so much?

I’ve been dreaming of her First Communion dress for at least a year as well. I got the initial idea of having my own wedding dress cut down for her. My plan was to have a dress made for her, and then a baptismal gown made for Dakotah to have for her children.

But, a trip to the dressmakers in January discouraged that. She said that material that is older like that is very hard to work with, and stands a good chance of ripping at just the wrong moment.

So, I took the bodice of the dress out, the part that contained lace and glitz…thinking I could put that on the front of a dress I had made for her.

Another trip to the dressmaker was even more disappointing. She told me in February that I was way early to be thinking of this event that is scheduled for May; yet, when I returned this week, bodice and Paige in hand, she said she was just “too busy.” As she took out a pattern book for me to look at, I started telling her that I liked “this top, with this bottom”, etc…and she was very discouraging, saying that she didn’t have time to take from one to the other.

Well…I can follow a simply Butterick or Simplicity pattern! What I wanted was to design my “dream” dress for Paige…

I left, being told that my only option from her was a simple white sundress. She didn’t seem to get that I wasn’t interested in a “dress that could be used for something else” or in a sleeveless pattern that I could “always put a t-shirt under if you want sleeves.”

Boy, I wasn’t very impressed! I wanted a keepsake, something that we would still ooooh and awwww over in 25 years.

So, we spent the day yesterday in search of a First Communion dress for Paige. I went to four different bridal shops; where I quickly learned that there isn’t a huge call for First Communion dresses anymore…people really are going for that simple dress you can use for something else. And what the heck is it with all the sleeveless white dresses?!? We live in Canada, land of the cold!!! Put some sleeves on those babies!

At the third shop, I did find 5 little dresses that I liked. Paige was such a big girl trying them all on!!! She loved looking at her pretty self in the mirror, and Daddy, Dakotah, and I told her over and over how pretty she was!!!

She won’t have my wedding dress to wear on her First Communion. But, she will have the dress that we knew was the perfect one the minute she tried it on…one that is truly a First Communion Dress, not a flower girl dress, or a sundress, or a pageant dress, or any other silliness…a pretty little dress that lets her look like a pretty little girl.

And admittedly, she’ll be wearing a dress that cost more than my wedding dress did 15 years ago.

She’ll be the oldest in her class taking First Communion, but in that tiny little size 5 dress, she certainly won’t stand out as the biggest!!

Through The Great White Dress Search of 2006, I figured out that I do not want this to be so special and so perfect because her baptism was so scary, and so rushed as she headed into life-saving surgery.

Its not because I’m trying to make up for the fact that she might never go to Prom, or ever get married, or ever have reason to need a beautiful dress again.

Because, if she’s taught me anything, its that I just never know what she is going to do, and I may very well be shelling out another few hundred bucks for each of these occasions in her life.

I want it to be perfect and special because she is perfect and special…just like Dakotah was for her First Communion. I want her to feel like a princess that day…to embrace those childhood moments she is so deserving of.

We still laugh at how Dakotah felt so special and important on her First Communion Day because she had a “big girl purse”…a tiny, shiny white little purse she carried all day long, whose sole contents were three pennies.

Even Dakotah sees herself growing up since that memory. She cherishes that day as a celebration of her childhood that she will never forget.

We want nothing more or less for Paige.

They Grow Up So Fast

I thought I'd share this picture of Dakotah. She took it herself this afternoon, standing in the bathroom, of all places.

I thought it was just a beautiful picture, and the light looks like natural light, not that of a glaring lightbulb.

She's very interested in photography, and she certainly seems to have a knack for it.

Its hard to believe she is only 12 years old...she won't even be a teenager until October. No one ever believes that!

She is 5'6" already 4.5" taller than I am! And, God help my soul, passes for a 16 or 17 year old constantly. She's leggy and very well "developed," and seems to get noticed a whole lot more than we'd wish!!

At my nephew's wedding in NY last Fall, she walked into a hotel room ahead of me, and about 7 or 8 young men in their 20's all went, "well, hel-looooooo" to her as she walked in. I quickly walked in behind her, and said, "hel-loooooo, she is 12!!"

Is it 2012 yet?

The Year of the Sacraments

So, Paige is in Grade Two this year at the Catholic School she attends. And with that, comes the honor of receiving the sacraments of Reconciliation, Confirmation, and First Communion.

This will be a series of entries about her experiences with these great moments in her life.

Paige did her First Reconciliation in November. Well...sort of. Its kind of hard to confess to a whole lot when your vocabulary consists of "Right There" "All Done" "Mama" "Dada" "DiDi" "Ball" and "No."

The good thing is, when your vocabulary is that limited, you don't really have a lot of white lies to confess to. And you don't have to worry about calling anyone a bad name, or hurting their feelings.

So, Paige was the most chillin' of the Grade Two kids on that fateful night when they stepped up onto the altar to sit next to Father Maloney in his giant chair, and tell all. And even if he decided to make her recite a few Hail Marys, he had already quickly forgiven her when she marched right up there, put her arms around his neck, rubbed his balding head, and said, "awwwwwwwwww....." to him before he said a word.

So many people ponder about the things you can't do, my little one...but not too many people can say they love as sweetly and totally as you do.

100 Things About Me

100 Things About Me

1) I am obsessed with the name Ruby for a little girl. I dream about adopting a baby just so I can use the name. Most likely, I will end up with a dog named Ruby, lol.
2) I was voted “Most Likely To Succeed” and “Most Business Minded” in my high school graduating class.
3) The real truth is, at 42, I really don’t want to “be” anything when I grow up…If I were financially able, I could entertain myself quite easily without ever having a job, thank you very much.
4) I am easily entertained and hardly ever bored.
5) I could spend my days advocating, visiting families with children with Down Syndrome, writing, decorating my house, and doing crafts.
6) I am never more at home than I am in a crowd of little ones with Down Syndrome. It’s like a big sigh of contentment.
7) I fantasize about winning the lottery every day, and have intricate plans about what I’d do with the money should I win. I actually believe I will win a large amount of money some day, although I rarely ever buy a lottery ticket.
8) If I ever won a large amount of money, I would become very eccentric. I would definitely pay it forward to less fortunate people, most especially to families of special needs children. I would not give money frivolously to my children or extended family. I would expect them to pay it forward as well.
9) I would love to design and build a home, without cost restriction, and spend a large amount of time decorating it just as I want to. It would be filled with antiques and strange pieces that had a story behind them.
10) I love going to estate auctions. I make up intricate fantasies about the “stuff” that is there, the history behind the old quilts, and huge dining room tables, etc.
11) My biggest find was a set of Wedgwood dishes that I paid $4.00 for…later to find out they were worth nearly $2000.
12) I love wine, although I very rarely drink it. If it weren’t for the whole alcohol factor, I’d drink it every single day, all day. I like the whole process of wine…choosing the right bottle, the right glass, the right temperature, etc. I also love Grey Goose Cosmo’s, straight up.
13) I have an older sister and an older brother.
14) I think my childhood memories are much different than theirs are.
15) I was the consummate daddy’s girl, and miss my father horribly since his death. I cry often about missing him, although I never tell anyone.
16) I’ve come to realize how needy and unstable my mother is. And I have very little tolerance for her inability to make any changes in herself.
17) In some ways, my siblings are my only remaining family.
18) I have very detailed, disturbing dreams many nights a week, and I remember all of the details of them when I wake up.
19) I am a city girl, although I’ve lived in a small town for at least half my life.
20) I am both an extrovert and a loner.
21) I could easily keep to myself for weeks and months at a time and not get lonely for friends. I dream of removing myself from everything for 30 days, and just writing.
22) At the same time, I always thought my married life would include lots and lots of couple friends, dinner parties, get togethers, etc. It does not. And that makes me kind of sad.
23) I feel very much an outsider in my world, like I am watching a movie of things that are happening around me.
24) When Paige is at school, I cannot stand to have Blue’s Clues or Caillou or any children’s show on the TV at all. It makes me incredibly sad to hear them without her here, and I will weep uncontrollably if they are on.
25) October 17 has always been my favorite day of the year. I used to throw “Happy October 17” parties when I was younger. I think I willed Dakotah to be born on that day.
26) I am opposite of Wayne in almost every way. Sometimes it amazes me that we ever function as husband and wife, so different are our views about everything, the way we handle problems, the way we interact with each other and our children.
27) I am an incredibly loyal friend, yet I don’t seem to maintain friendships for years and years.
28) I rarely miss people…when a friend drifts away, I quickly become detached, and just let that friendship dissolve. I don’t know why I do this.
29) I self diagnose myself constantly. But, I rarely go to a doctor, because I fear he will think I am a hypochondriac, even when my symptoms are very real. I’ve never been to see a doctor who didn’t tell me I should have come in sooner with whatever was wrong, so I don’t know where the fear of wasting his time comes from.
30) I had whooping cough when I was 15 and missed 4 months of high school. The only people I saw were my parents and sister during that time.
31) I have always loved small, fast cars. In my youth, I lusted over miata’s & mazda RX7’s. As an adult, I dream of the BMW convertible in a true blue color. And lately, I am yearning for a new Pontiac Solstice Roadster.
32) I never owned a small sports car because my father worried about my safety in them, and I feel like I am betraying him to drive one. Instead, I drive a van, something I promised never to own.
33) Someday, I’ll own a motorcycle.
34) I love reality TV. The bigger the train wreck, the better. I loved the show “Temptation Island” because the premise was so insane. I would watch Big Brother all summer if I didn’t have to admit to it.
35) I would never be on Survivor or The Amazing Race. I’d be the person who gave up after the word “Go” was shouted. I don’t do well with creepy crawly things, or with getting lost. I’d never, ever take Wayne with me on either of these shows….we would last exactly 5 minutes before I was d.o.n.e.
36) I’m not a good traveler. It makes me very uneasy to be away from home. This has only started since my kids were born.
37) I used to be a total adrenaline junkie. I wanted to jump out of planes, bungee jump, and go on all of the fastest roller coasters. Now, I want no part of any of that. I think it’s my responsibility to my children that makes me stop.
38) I have a horrific irrational fear of bats. To the point where I know that I could easily have a nervous breakdown if I am confronted with one.
39) I don’t like being the center of attention…I don’t like opening birthday gifts in front of people, didn’t like my showers, etc. I don’t want to be the chair of a committee, or the president of anything. I am definitely the “worker bee” and have no problem doing the behind the scenes work.
40) I do love public speaking though, and am totally at ease doing it.
41) I am much more religious than anyone that knows me thinks I am. I believe completely, and have great reverence for my religion. I think that the consecration of bread and wine to body and blood of Christ is awesome, and I am truly, truly honored to be able to take communion.
42) I find great comfort in being able to just close my eyes and say to God, “I trust you with this; I put it in your hands; guide me.
43) I am secretly terrified that I am not worthy of all of the blessings I have been given in my life. I am afraid someone will discover that I am faking the person I am, and will take it all away.
44) My favorite color is red. It’s a happy color.
45) I have a great sense of humor, and am very quick witted.
46) I am a kind person.
47) I am a good Mom.
48) I know without a doubt that I am a better mother to Paige than I am to Dakotah. I find it much easier and much more natural to parent Paige…it truly feels like I am called to parent her. Dakotah challenges me much more, questions me, makes me worry and fret, and wonder if I’ll succeed with her.
49) I would never cheat on my spouse. Ever.
50) edited for silliness
51) I believe life evolves in cyclical fashion…there are good times, and bad, crazy times, and mad times, and waiting it out really helps.
52) I can’t wait to see how my life turns out. I can’t wait to see what my children will be like as adults.
53) I love freshly picked strawberries, still warm from the summer sun. They are the reason I believe in God…nothing could be made so perfectly by anyone except Him. I can eat a quart of them in one sitting. I want them as nature gives them to me…sweet, warm, juicy and fresh. I do not want them in a shortcake. I do not want sugar or cream or anything else on them. I will concede to frozen strawberry dauquiris though!
54) I was a straight A student in school, and am very intelligent. I forget that, and am surprised when I achieve something that someone else doesn’t.
55) My parents never pushed or even really encouraged me to be all that I can be. I believe if they had, my life would have been quite different.
56) I have a “wild” side that I have kept under control for my whole life. I have a good moral base, and good judgment, so I have always known “how far is too far.” Sometimes, I teetered on the edge.
57) If my husband was a drinker, I’d probably be one too. I partied a lot when I was young, and have very good, fun memories of it. I wouldn’t trade that part of my life, but know it had its place and its time.
58) I got married at 27. I think that is the perfect age to get married. I really enjoyed my “single” life, and had a chance to do a lot of fun things in my 20’s, and I was ready for the next stage in my life then.
59)I wish I had Brushfield spots. But I did inherit my father’s crystal blue eyes that I passed on to Paige.
60) I lust over John Travolta. My heart flutters when I see him.
61) I am resentful of stuff I don’t have sometimes. I don’t like that characteristic.
62) I stink at taking pictures of my children. I have rolls of undeveloped film. And stacks of pictures not placed in a photo album.
63) I need glasses, and don’t ever bother going to get them, although I have to hold things farther and farther away from me.
64) I am a good writer. I want to write a book. I have a story to tell.
65) I thank God for giving me both the gift of a healthy child, and a child who was critically ill. I needed both in my life to learn the lessons I needed to learn.
66) I hate smoking. Hate, hate, hate it.
67) I have been diagnosed with OCD. Mine is classified as “thinking” OCD…meaning I don’t outwardly feed my obsessions & compulsions, but I do crazy, goofy things in my head because of it, such as making lists, going over events over and over again, etc. For the most part, I embrace it, as it has been a part of me since I was a child…and I am very high-functioning because of it…able to do a lot of things at the same time, keep very organized, etc. But, when its’ bad, it’s bad. A real pain in the butt.
68) I am a horrible insomniac, and can specifically remember probably 3 or 4 nights in my life where I actually slept 8 hours straight.
69) I have a very good sense of perspective…I can remember the defining moment in my life when I decided that I would laugh and find great joy in life, and not worry so much about other people’s opinions.
70) I never remember movies after I’ve seen them. I can rent a movie one weekend, and then go back the next and re-rent it, not realizing I have just seen it.
71) I can join just about any 60’s, 70’s, 80’s top 40 song after the first few notes, and sing along with it. But I cannot tell you the title or the artist who sang it.
72) My life plan is very, very different than I expected it to be, in almost every single way. I would have never guessed it to be as it is.
73) I don’t really have any “life regrets,” although if I were given the same life over again, I’d take lots of different paths next time, just for the adventure of it.
74) I am short. And overweight. I would love to be thin just once in my life, but I haven’t put in the work to make that happen.
75) I wish I were a jogger. And a health food nut. I wish that way of life would come easily to me.
76) I am not vain. I brush the idea of plastic surgery off very easily, and very rarely worry about clothing or hair or any of the “cosmetic” parts of myself. I don’t fuss over things like that. I like me o.k. as I am I guess.
77) I pretty much hate all housework. But I do a ton of it.
78) Autumn is my favorite time of year, and the time I miss New England the most.
79) Thanksgiving is my favorite holiday. All that good food and no stress of Christmas, lol.
80) My birthday is February 17. My sign is Aquarius. I love that my birthstone is amethyst. I’ve always loved that stone, and wanted it as an engagement ring.
81) I love lilacs, and wish I could have had them as my wedding flowers. There are lilac trees out my dining room window.
82) I love to color, and have my own set of crayons that my kids don’t know about.
83) I have no idea what other people would say about me if you asked them to describe me.
84) I have a lot of pet peeves. A lot.
85) I don’t like a lot of noise. The only time I can really tolerate music is when I’m driving in the car alone. It makes me absolutely crazy to have to listen to a concert that Wayne has downloaded off the internet from 1977, full blast, with him singing to it. I want to run screaming from the room, and bite my tongue constantly for him to turn it off.
86) I think I’d be good at playing an instrument like a flute or a saxophone.
87) I was a really cute baby.
88) My earliest memory is watching the show “Dark Shadows.” I was very young, still in a crib, and had horrible, horrible nightmares of that show. There was a skeleton in the closet in the opening scene, and I would dream it was dancing around my crib. I remember thinking that my mother would be harmed if she came to pick me up.
89) I dislike being kissed, or held down in any way, or to be held very tightly. It comes from some instances in my childhood that I don’t talk to anyone about.
90) I loved to play floor hockey and racquetball when I was younger. They were the only sports I was any good at.
91) I love to cook, and equate lots of food with a happy home. I love to buy lots of groceries, plan meals out for a couple of weeks ahead of time, and do all the cooking for it in one or two days. It comforts me to know that my family is taken care of.
92) I am an excellent proofreader and can pick out an error in the newspaper in ten seconds flat.
93) I lost a job as an assistant to an Interior Decorator for a huge company once because I failed the color blind test. I have failed every color blind test I’ve ever taken.
94) I think everyone has a quirky skill. Mine is the ability to set the oven timer, walk away from it, forget about it, yet I will get up to go to the kitchen and it will start to ring every single time.
95) When my life is over, the one thing I will wish I had more of is time.
96) My favorite fast food is a sweet onion chicken teriyaki sub from Subway, with a little bit of lettuce, red onion, and sweet onion sauce, with a Diet Pepsi, and sun chips on the side.
97) I had terrible morning sickness throughout every one of my pregnancies. There is food that I still will not eat because just the smell of it made me sick then. And, there is food that I didn’t like at all until I was pregnant that I can’t get enough of. Like pumpkin…yum.
98) Every summer, I make intricate plans to home school my kids for those two months. I make charts in my head, promise to keep a strict routine every day, commit to turning off the TV and the computer, and working with them constantly. It lasts a week before I fail miserably at it, and relax into summer.
99) I love the smell of Jovan musk, and Obsession by Calvin Klein. I think I like Jovan Musk because my mother hated it so much, and I know I like Obsession because a boss I had a big crush on told me that I was a huge distraction to him every time he walked by me because I smelled so good.
100) I am the opposite of a procrastinator. If something has to be done, I can’t rest until it is done. It drives me crazy to put it off, or worse yet, get halfway through it and leave it hanging.

It's A Crazy, Wonderful Life

Well, here I am. I'm starting this blog in the hopes of plodding through my life story for my children. I have always known there was a great need to write our family history down...to share the stories of their childhood with them.

And, I know that there is a book in me yet to be written. Unfortunately, with the recent crash of our harddrive, much of what I have recorded is gone forever. So, I start again.

You never know what life will deliver to you; it all happens so fast, and unexpected things happen all the time. Much to my chargrin, when 40 arrived, time didn't slow down, and I didn't start to go backward in years, so hopefully, I will get some of our life down where it belongs.

I will have to fight for time to "blog" our lives...with a near-teenager who believes that she needs to be connected to MSN 24/7 "just in case" someone logs on, an almost 9-year old that has discovered pbskids.org, and lots of fun games there, and a husband that needs to check the scores and read the daily newspaper online, I often find myself last in line for time on the computer, much like I find myself last in line for many things!

At the very best, this blog will be stories my children will cherish, and stories of the incredible life blessings I have been given. At the very worst, it will be ramblings...thoughts, feelings, opinions that perhaps only I care about!

And maybe, just maybe, when all is said and done, I'll be able to pick it apart enough to finally get that book...