Sunday, April 30, 2006

Passing The Torch

Dakotah had her first "date" on Friday night.

Well, let me was the first time Dakotah has gone anywhere with members of the opposite sex outside of school, lol.

I had the honor of escorting her and her friends to the movies on Friday night. Somehow, the ratio ended up at 3 boys, 2 girls.

It was a group date, the only kind Dakotah would be allowed to go on at this point. And, it was supposed to be a group of friends going.

But...among the boys chosen to attend with her was "J"...the love of her life for the last 2 or 3 years. J and Dakotah have officially "gone out" together before...although they have never actually gone anywhere. But, they "dumped" each other sometime last summer, and after a few little spats back and forth, have remained really good friends.

J is very intimidated by me...and to be honest, I kind of like it that way!! I have no idea why he is so nervous around me, except that he is sweet on my daughter. I spend a lot of time at school, and all of the kids know me...we're that house where all the kids congregate, and I'm the "cool" mom because I'm often the taxi, or provider of food and snacks.

But J, well...he's keeping his eye on me. And me him.

I've spent a lot of time thinking about the whole mother/daughter relationship thing as my daughter prepares to barrel through her teen years, full speed ahead.

And I think I've figured a portion of it out. The reason its often so heady between a Mom and her daughter is that, not only is it a time when she is growing up, but its a time when I realize I am growing up too.

What I wish I could have told the kids the other night is that I was silently giggling to myself that I was considered the adult..."The Mom."

It seems like such a short time ago I was starting this whole dating thing, and I remember my first movie like it was yesterday. I remember taking hours to get ready for a date, fussing over what to wear, hoping, hoping, hoping that the boy I liked liked me too.

I don't know where the years went between that first date and Friday night. Honestly, they went by so quickly that I felt 13 all over again as I listened to them giggle, giggle, giggle, in the van, and talk about silly things that kids talk about.

Dakotah probably doesn't realize it, but I was capturing the memories of the night for her, because she, too, will speed through the years, and this magical "first" will be far behind her before she even realizes it.

It was so cute how the boys still sat in the back, and the girls in the they aren't quite ready to pair up yet.

And it was awesome for me, as a Mom, to have a few moments of quiet privacy with Dakotah after everyone had been dropped off...where she told me all the details of the night that made her swoon.

When "N" sat beside Dakotah at the movie, J picked him up and moved him aside, so he could sit by Dakotah. And sometime during the movie, J mustered up enough courage to tentatively reach out for Dakotah's hand to hold.

I can so vividly remember when that first boy reached for my hand for the first heart felt like it was going to beat right out of my chest.

I imagine Dakotah felt the same way, as she floated on cloud 9 for the whole weekend.

I'm very lucky she is so open with me about her life. I think if I can keep that going, we will surely make it through the next years relatively unscathed.

And now that I've figured out that I have to let go of the fact that I'm not a teenager anymore, I can embrace my "momminess" and cheer her through these milestones of her life, even while a small part of me wistfully wishes to be transported back there myself.

J and Dakotah are still not "going out," which is way more than fine by me. But, I'm hoping that they are learning to build a really good friendship that will take them through the next few years.

Just remember, I'm watching you, Mister.

Tuesday, April 25, 2006

Its Official! Paige is Confirmed!

Paige had her Confirmation at Church last night...her First Communion will be in 2 weeks. This is her waiting patiently for her Godparents to arrive.

It was so emotional for me to see her join her class, as well as about 75 other students who were confirmed last night. She had to sit separately from us, with her Godparents, and she did so well through the rather long ceremony.

Its been a long journey, and it was a triumph for us to present a happy, healthy little girl to the Bishop for his blessings, as her baptism was a scary, hurried event, given just before her first surgery. far she's come...what an amazing little girl.

As the Bishop delivered his homily, he spoke to the children about their baptisms, and how it was a time in their lives that everything had to be done for them...that their parents chose to baptize them, and bring them to the Church.

But, now, they were growing up, and able to make the choice for themselves. He gave them lots of examples of how they are independent of their parents now.

Of course, it was with a bit of melancholy that I acknowledged to myself that Paige still isn't able to do many of those things he spoke about...making herself a bowl of cereal, or reading a book, or riding a bike.

But, as he continued to talk, he explained to them that they were being called to God last night for a very important reason. That they were now God's "helpers" and it was their job to help make the world a better place.

He spoke to them about being peacemakers and peacekeepers, and about spreading love to others. He told them that they had to help God teach the world how to be good, and kind and caring.

He said that this would be the most important job they ever had in their lives, no matter what their chosen career was.

As you can imagine, my melancholy quickly disappeared, as I realized that Paige would take her "job" from God as seriously, if not more seriously than the other children in attendance.

In some ways, she will be very lucky not to be burdened by many of the outside stresses of daily living that some of these children will be as they grow.

And, in some ways, her job began a very long time ago; the very first time she opened a heart to Down syndrome, or made someone smile in a grocery store as she laughed away and exclaimed "Hi! Hi! Hi!" over and over until they took time from their busy day and said hello back.

When she kicked off the Children's Telethon, and her sweet face appeared in the bubble of the little girl blowing bubbles...Paige's face appeared in the "hope" bubble.

All the times I've taken her to meet countless new parents of babies with Down syndrome, and she walked up to the new baby, put her hand gently on his or her head, and said, "awwwwwwww, and signed "baby"...and the times when she quickly turned with a hug for the Mom or Dad who needed it too.

And, luckily for me, I had the chance to debate differences yesterday, and was given some very thought provoking reasons to ponder the acceptance of Paige's differences, and to distinguish between coming to terms with differences, accepting them, and rejoicing them.

There are many paths our lives take, and many journeys we have to walk on to find our way...

Thankfully, God has called upon one of his little Helpers to show me the way.

Sunday, April 23, 2006

Compliment Three People A Day

I have a large picture that hangs in my bathroom that's titled "Life's Little Instructions."

On it, there are about 40 or 50 little "pointers" for enjoying life. One of the pointers is to compliment three people a day. That seems kind of hokie at first, as if I'm offering a compliment to someone just to get my "3 a day" in.

But, haven't you ever been out shopping, or washing your car, or at the doctor's office, and someone says something to you, just in passing, and it significantly changes your day or, sometimes even your life?

I read in Nicole's Blog about "hip boy" whom she met on a last minute Target-run to replace melted Easter Bunnies. And the check-out boy who handed Mikey a grocery bag to help his Mom, on a day when Monica was wondering if the world would ever see her son as "just a kid."

So, this blog entry is to acknowledge some memorable moments in time for me...some good, so...not so good.I haven't forgotten:

--The woman in the grocery store who handed me $10, and took my hand in hers, looked at Paige, and said, "I'm so sorry; she would have been so pretty."

--The man with T21 who played with the Bouncing Tigger toy in December 1996. You changed my life forever that day.

--The young man with T21 who came up to me and hugged my big baby belly when I was pregnant with Paige, and screamed "BAAAAAAAAAABBBBEEEEEEEE"

--The old, old woman who exclaimed to her husband, "Oh, look, honey, at the little retarded girl...isn't she just precious?" and then fawned all over her for 20 minutes. It reminded me thatsometimes people aren't just trying to be cruel with outdated words.

--Dakotah kissing my belly the night I got Paige's diagnosis, saying, "Good-night, babydoll", just like she did every other night of my pregnancy. She got it before I did.

--Wayne telling my mother he'd never take his wedding ring off on our wedding day. And he hasn't.

--The gentleman who stopped me at the zoo, and said, "she looks just like are so blessed."

--The woman who came back out of Dr. Pothos' office two years ago, in tears, and gave me a big hug, and thanked me...she had a tiny little one with DS, and I said, "He's so beautiful!! It makes me want a baby all over again." She thanked me for seeing her son, and seeing beauty, and something "desirable." I won't forget how good she made me feel.

--The guy at Subway last year who said, "I'll have what she's having" after I had ordered my sub. I was having a terrible day, and I really needed to feel worthy of being flirted with, and looked at as someone other than a wife and mom.

--The girl at the mall who stopped me in mid-sentence, and said, "You have the most beautiful eyes." -

-The countless people, too numerous to mention, who have stopped to say hello to Paige, or who have waved back at her for the 20th time when she is waving to them. Those smiles and hellos have meant the world to us.


So, just think about it the next time you have an exchange with a stranger somewhere. You might make their day. Smile and say hello to an elderly person. Tell the cashier to have a nice day. Let someone in line for gas go ahead of you.

Oh, and as my bathroom sign says:Never, ever refuse homemade brownies.

Saturday, April 22, 2006

Happy Saturday!

Its one of those Saturdays that I just love.

I love the weekend days when everyone is up early, and we've made our plans for the day. I love being home with my husband and kids, and working around my house. There's nothing special planned, but its a good day to be alive.

Its kind of rainy outside, so that puts the stops on our big project right now...putting new siding on our front porch. The rest of our house is newly sided, but for some reason, the previous owner didn't do this small part of the house.

In my own mind, I've got big plans for this house! Although its quite alright as it is, I have redecorated and remodelled it a hundred times over in my head. I figure by the time we've worked our way room by room, the first room will be ready for my imagination again. :)

So, in light of the rain, we are working on inside projects.

I've already got a big roast cooking in the crockpot for dinner, and homemade soup is on the menu for lunch. I like that I don't have to think about what to feed everyone for at least another 24 hours!!

Dakotah and I are tackling her bedroom today...a task that would daunt the most hearty. She's got so many clothes in that room that she's outgrown, and they need to be weeded out. God only knows what else I'll find in there in our adventures.

Wayne is working on his Little League today. He's starting it from scratch in our town, and has 125 kids signed up. He's got a lot of work to do to organize it. I'm sure before the end of the summer, I'll be irritated at how much time its taking up, but for right now, I'm happy that he's decided to do something good for our community.

He's a bit of an "anti-volunteer" and I'm snickering under my breath a little bit at how involved he's gotten with this...its pay back for all the volunteering I've done over the past years, where he shook his head, and thought I had a big red "S" on my forehead for doing it.

And Paige...well...Paige is moving from project to project today. She'll love being in Dakotah's room, taking clothes out of drawers, going through all of her books and magazines, and generally making a mess of anything we've already cleaned.

Right now, she's sitting on the floor with a lip gloss, trying to glue two pieces of paper together, lol.

Its one of those days when I feel content to

Monday, April 17, 2006

Hoppy Easter! Cough cough cough

So, of course, the Easter Bunny stopped at our house yesterday. My kids aren't big candy fans - so we will probably be adding to the "Halloween candy" and "Christmas candy" collection that never seems to disappear.

I invested in a chocolate only Easter, because jelly beans and other confections always take a back seat to chocolate anyway!

This is the first year since Dakotah was a baby that we didn't hide Easter eggs for the kids. Unlike some of you reading this blog, we don't have outdoor hunts, as it is still cold and muddy in back yards.

Our family tradition is leaving baskets full of empty plastic eggs that the Easter bunny then takes and fills with jelly beans and chocolate, and hides them all over the house. He then fills the baskets with small Spring time toys...bubbles, jumpropes, a new set of clothes, etc.

But, with what is usually 100-125 plastic eggs to hide, we are always hiding them in the same places in our house. And Paige isn't really a hunter...she's more of a "bring me chocolate" kind of girl.

So it was decided that Dakotah had hunted in the same places enough times, and that we'd take a break from it this year....perhaps Paige will be more interested next year.

Paige did have a hunt at school in her Living & Learning Room, but she was more interested in re-hiding the eggs in the cornmeal table than she was in actually finding them.

And yesterday, as she was looking through her basket, she picked up every plastic egg and licked it for some reason. I think its that age old kid trick of licking your food so your sibling doesn't steal it!! :)

Holidays like Easter, Halloween, Valentine's Day, etc. are really nerve-wracking for me, as they are days that make choking a big issue for us. There's always little candies laying around, and I'm always nervous that Paige will pick something up and try to eat it and choke without me seeing it.


Well, she didn't choke on any candy, so that was good.

Dinnertime was a whole other story. There was a lot of chaos going on at the table, and I was distracted and she took a few big bites of food. They managed to get lodged in her esophagus, and she had an episode called "stacking" which is very common in kids with her esophageal problems.

What happens is that her esophagus has some scarring from so many surgeries, and therefore isn't able to expand and push food down like the rest of ours do. So, if she swallows a piece of food too big, it will just sit in one spot and then subsequent food will stack on top of it.

The real issue is that as her esophagus gets "full," her trachea starts to close. This can happen immediately, or hours after eating.

That's why people with EA have fatal chokes...they don't choke to death with someone watching them while they are eat, but later when they are sleeping, or slowly without anyone realizing what went wrong.


Anyway, this time, Paige was able to bring up the food herself, after some wretching and gagging.

Its always a stressful reminder that we have to be ever watchful of her. I suppose in some twisted way, its a good thing it happens every once in a while, so that we don't get too complacent in our care of her.

She's not groggly like she sometimes is afterward, although she was pretty pale for a while after it happened.

But, boy oh boy, she's been full of mischief today! I think I've run about 10 miles just chasing her through the house.

Maybe she's sensing Mommy is feeling a little softhearted today...

Sunday, April 16, 2006

He is Risen!!!

Today is the great triumph, the great joy, in what has been a solemn time in the Christian faith.

"For God gave His only Son, that whoever believes in Him should not perish but have eternal life"

Imagine...just imagine, being all powerful, and all knowing, having the ability to create miracles, to be well...God.

And then your only Son as a sign to the world...watching your son suffer at the hands of disbelievers, in order to fulfill the scriptures.

I remember watching The Passion of the Christ, and weeping openly, literally praying as the movie went on, for it to stop, for my Christ to stop being tortured. I wanted to scream out, "I'm so, so sorry for what we did to you."

And yet, our faith tells us that this had to be...that we had to witness the sacrifice of Jesus in order to see and believe in his resurrection.

Our Bishop included in his homily this week the thought that perhaps it is good that we are sometimes doubtful, and that we must ponder our faith in order to thrive in it.

For me, I know my faith is much more powerful because it is just I am in such awe of the events that led to His rising, and know that its true faith that allows me to believe and to know it is true without having to have proof.

I am so humbled at the glory of my world, the blessings of my life, the joy that I live.

Glory be to the Father.


Wednesday, April 12, 2006

Down syndrome is not good or just is.

I think our society has the tendency to sensationalize those things which are different. What is perhaps just a product of our humanity, is often seen as incredible if it is good, and as horrific if it is bad.

We are a society of “fixers.” And thank Heavens for that. It is to our advantage to keep our houses up, to maintain jobs, to do the daily chores which must be done.

Further than that, our quest to fix things has led to major medical advances in so many areas. Our life spans are greater now than they have ever been. We realize the importance of good nutrition and healthy exercise.

Although we sometimes refer to the “good old days” when people got their food from the land, and worked the fields for exercise, we clearly have a better ability to care for our health now.

Unfortunately, we sometimes look to fix things that are not broken. We cannot always accept things which we deem imperfect.

So…we get face lifts, and tummy tucks, and color our hair.

On a grander scale, we belief we can control our own destiny in our almost-perfect world. It becomes acceptable to reject that which is not perfect, and to strive for the best.

Prenatally, we are offered every test possible to ensure that “perfection” in our children. And we are offered choices when that perfection cannot be attained.

Recently, the topic of “fixing” children with Down syndrome has come up a few times in my every day conversation.

A couple of weeks ago, from a friend of mine who has a little girl with Down syndrome…someone she knows very well, and who loves her children dearly asked her if there wasn’t perhaps a pill that would “fix” her child…that would take Down syndrome away.

And, as it seems to come up every once in a while, the use of “supervitamins” and other nutritional supplements, including drugs that have not yet been studied, touted to take away the effects of Down syndrome has come up for me.

I have very definite opinions about the use of these supplements. Specifically, I have very definite opinions about the people who are marketing these supplements. They market the supplements with the belief that Down syndrome can be cured; that it is a disease that children are suffering from and that we OWE it to our children to fix them.

Without getting into a long explanation of these specific vitamins and their claims to help children with Down syndrome, I want to comment on the aspect of "fixing" Paige.

I have the obligation, and, indeed, the desire to provide Paige with the necessary things to help her reach her greatest potential. To that end, I did all of the typical things that pregnant Moms do...I had good prenatal care, I took care of myself, etc.

And because Paige comes with an extra chromosome, I've also done a few extra things...

I've enrolled her in various therapies, OT, PT, Infant Stimulation, speech therapies, etc. since she was a tiny baby. I've learned some basic sign language to facilitate her communication skills, and I've been very active in her school environment, making sure she has what I consider the best opportunities for her to grow and develop both socially and academically at school.

But, you know....thank God for Wayne too.

Because he makes sure I don't get frantic and crazy in my quest to help Paige. He takes the "just a kid" approach with her, and lets her do things that I shudder watching baseball and hockey, and occasionally even wrestling on TV, because it makes her laugh out loud. He teaches her to smack her forehead, and say "doh" just like Homer Simpson does. He even snickers with her when she lifts her butt cheek and passes gas.

In his own way, he is keeping me from building a "super child" based on my expectations. He understands that we really have nothing to prove...we don't have to have the smartest, fastest, tallest, greatest (well, maybe greatest!) kid with Down syndrome in the world.

We just need Paige.

And our obligations and desires for her go much further than pushing her to achieve everything, and then showing the world we did it.

She deserves her own humanity, just like the rest of us. She deserves the opportunity not to work on her letters tonight just because she doesn't feel like doing it. She deserves to be silly, and make us laugh, even when she knows she's doing something goofy like putting her shoes on the wrong feet on purpose.

Just as we cannot do it with Dakotah, we cannot create some sort of expectation and template of items that will make Paige "happy" or "successful" in this life...she has the right to create that template on her own.

And we have the great blessing of being able to cheer her on as she makes that give her the things she needs to design it, and then to beam with pride as we watch the final product emerge.

I don't need to fix her...not even a tiny bit. She's perfect just the way she is.

Saturday, April 08, 2006

I'm Leaving...On a Jet Plane...Don't Know When I'll Be Back Again...

When I lived and worked in NH, I had this friend Nancy.

Nancy was a hoot...someone I really admired and grew to love. I was perhaps 23 or so when I knew her, and Nancy was in her late 50's.

She was a no-nonsense woman, who had a ready laugh, and would hit the bars for a few drinks with us on a Friday night.

She had been widowed twice at a very young age, and married three times...having married one of those husbands twice.

Her first husband had died at 30 of a heart attack, leaving her with 4 children to raise on her own. She remarried her 2nd husband, divorced him a year later, and then remarried him again.

He was killed a few years later doing drills for the National Guard...a driver was backing a tank up into a garage, and trapped her husband against the wall, killing him.

Needless to say, Nancy was an amazingly strong woman...she did manage to raise those 4 kids for the remainder of their childhood. And she managed to really love life along the way.

One of my favourite stories that Nancy told me was about a year before her second husband died. She was feeling very overwhelmed, as young mothers often do...and really fed up with the day to day routine's of making lunches, doing laundry, cleaning house, grocery shopping, cooking meals, etc.

And, like most of us who do those tasks on a daily basis, was feeling very under-appreciated.

So, she sent her kids, who were between around 8 and 13 at the time off to school; kissed her husband good-bye for work, and left them a note that said,

"You are all taking me for granted; none of you realize how much I really do around here. Rather than complain anymore, I am taking a vacation to my sister's in Wisconsin. See you in three weeks."

And...she left on an airplane for her vacation!!

Wow...I always loved that story, long before I had a family and knew the real extent of how she was feeling.

When she returned, her house was spotless, and her family was so glad to see her. She had a long talk with her husband, who apparently made some very real changes after that.

Now...the moral of the story for me...

I'm feeling exactly the same way. I've always described myself as a Type A personality trapped in a Type B body. I'm hyper, and a "doer"...I can't stand procrastinating, and leaving things undone. When I have free time, I want to use it to its best advantage.

I hate how much of my time feels "wasted" by every day tasks of, cleaning, ironing, vacuuming, etc...

Its a cycle that never, ever seems to end, and most of the time, it is literally one against three in my house...I clean and the rest of them make the mess!

I used to say that my sister cleaned more than anyone I had ever met, yet she had the most cluttered house of everyone I'd ever met.

Now, I understand why. Like she did at the time, I have a young family, and ironically enough, I have married a man who not only looks like her husband, but acts like him too.

If Type A is the most "hyper" personality Type, then Wayne is about a Q on the scale.

I think some of it is that I'm not a routine person...I cannot follow a routine like my mother-in-law...laundry on Monday, vacuuming on Tuesday, grocery shopping on Wednesday.

Just the thought of that drives me crazy!!! And God forbid if you upset that routine...there is hell to pay.

But, as much as I hate to admit it, I have own mother's trait of not being able to sit still for a moment, and always having to be "puttering."

Wayne...not so much. The man embraces relaxing...he eats a meal, he relaxes, he brings groceries in from the car, he relaxes, he mows the lawn, he relaxes. Couple that with his ability to find a baseball/football/hockey/bowling/golf game on the tv 24/7, and get the idea.

Today, he is off at a simulated Little League game (don't ask) he has decided to start Little League baseball in our town.

And when he gets guessed it...he will have to "relax" from his day.

I've done 5 loads of laundry, washed dishes, cooked breakfast & lunch for my kids, showered, dressed, grocery shopped...and as I look around my house, have so much more to do before my house meets my standards.

There are piles of papers on my kitchen table that Wayne has left behind...Little League sign-up sheets, phone numbers, etc. Not to mention the countless little computer parts and pieces that come home with him because of his job.

Paige has taken every magazine in our house out to look at it on the living room floor.

As I look around, I can follow Dakotah's trail of activities for the day. She polished her nails in the living room, leaving remover and nail polish, along with about 10 cotton balls on the coffee table. She's been outside, because she dropped her sweatshirt off in a chair instead of hanging it up. She's fiddled with her hair, adding gel, and leaving that along with a brush and a comb on the couch.

She's changed her clothes at least 3 times that I can count, as she is going to the movies tonight with friends, and must achieve that perfect look. This means that her bedroom floor is now covered in clean, unworn clothes, that when I ask to be picked up, will be stuff in the hamper and I'll wash them, not exactly knowing what is clean and what is not.

She's been in my makeup...which isn't a huge problem, but God knows where my mascara might be right now.

The more manical I become about getting all this clutter picked up the more "relaxed" my family will become. Wayne will generously tell me, "just relax....don't do it right now."

This is not some secret code for "I'll do it" simply means...don't do it can do it later.

I always, always feel so robbed of time...time for my family, time for myself, time to make a difference...and all of these daily tasks are just killing me today.

I wonder how much a ticket to Wisconsin really does cost?

Wednesday, April 05, 2006

Who Said It Was Supposed To Be Easy?

I readily admit that its much easier being a parent to Paige than it is to Dakotah.

Paige's needs are more defined, and easier for me to meet. I can advocate for her when I need to, and she is easier on me than Dakotah is...Paige still thinks I know everything, and that I have the ability to always keep her safe, kiss all her boo-boo's, and make her laugh when she needs it.

Dakotah...well...we're entering what I think is the toughest part of my parenting job...the beginning of the task of letting her go.

She was an amazingly easy child, very bright, and easy going, and fun to be around. She enjoyed being a "single child" for quite a while before Paige arrived. I stayed at home with her and lavished her with attention. She was my world, and I loved every moment of our time together.

Even when she started school, with only the very best of intentions, I kind of went back to school with her. I sat on parent council, and volunteered a TON of my time at her school. I knew every child in her school by name, and knew about every moment of her daily life.

Now, I question whether I made the right choice to do that...certainly, it has become time for me to stop doing it...its not fair for her to be one of just a couple of kids in the school who's Mom is always around.

She is unique for an almost teenager in a few ways. She still loves to be with me, and never leaves my side when she is at home. She is chatty, and I hear every detail of her day, just like I have heard since she first started speaking at 18 months.

And, some things she is totally "typical teenager." She wants to stay up until midnight every night and sleep until noon every day. This doesn't work so well with a school schedule. She wants to spend enormous amounts of time on MSN messenger, and when she's not doing that, she wants to "hang out" with friends.

She also has evolved to the time in her life when she is really testing limits. Fortunately (I think!), her rebellion is in her quick tongue, and her ability to argue the sand off a beach. She follows the rule we set out for her most times, and we supervise her closely enough that she can't really get herself into too much trouble just yet.

I must say, its immensely exasperating for me to have her issue an opinion on everything that goes on in our house...from what's for dinner, to how *I* should dress, to the color of the front door we are painting.

She also feels a great deal of self-importance, and interjects on conversations exclusively between Wayne and I, because, of course, she knows best. We find it very hard to have a conversation any more with her around; even when she is in bed at night, I find that a day or two later, she is saying something that makes me realize she listened to everything we said.

I'm finding this quite demanding, and struggling with how to get past it without our house being filled with the drama that comes with being almost 13....the "no one understands" "no one cares" "no one loves me" "its not fair" mentality that is usually followed by a stomp off to her bedroom.

And, of course...she has discovered the dreaded b-o-y-s. Or boy, should I say. The same one she has had a schoolgirl crush on for two years now.

She is happy and fun and delightful when he calls her or sends and email, and miserable and impossible to live with when he doesn't.

The 42-year-old in me understands how silly it is that its all that dramatic, but the once 13-year-old in me remembers it all too well.

Today, she had to go to school and apologize to a friend because she had a bad day yesterday, and hurt her friend's feelings with a comment. Dakotah was being picked on by a couple of friends that were teasing her in good fun. She knew they were just having fun, but had one of those days when it was just hard to remember that.

Instead of telling those friends to stop, she lashed out at one of her longest friends. She felt horrible last night.

Its killing me. Absolutely killing me.

I hate that I can't swoop in and fix it for her. I hate that she is so emotional and so up and down with her moods. I hate that I had to be strict and firm with her last night when she was crying, because she created the problem she was crying about herself.

I hate that I had to let her take responsibility for it, and shoulder it herself.

Because she is almost 13, she is convinced that I couldn't possibly understand, and that I exist mostly just to torment her life.

I wish she could understand that this is the hardest thing in the world for me...letting go...hoping and praying and hoping and praying that we have given her the tools to survive these next few years gloriously; to become the amazing young woman I know she will.

She thinks I rule her life, but the funny thing is...

I have to literally talk myself through every step of independence I give to her. I have to convince myself over and over again that I NEED to let her make some mistakes, such as the very small one she made yesterday, in order to conquer bigger ones that might come her way.

I have to balance what "all the other kids are doing" with what I think are the right choices for me as a parent...and somehow find a way to give her that freedom a little bit at a time.

I wish I could tell her that I wanted nothing more than to hug her and cry right along with her last tell her I'd make it all better, and that she could stay home with Mom today, and we'd pamper ourselves.

The funny thing is, she woke up in a good mood, and didn't even ask to stay home. So, she probably didn't need me today half as much as I need her.

She can't understand how my heartstrings are tugging at watching her grow up. And she won't understand that for another 30 years.

I so want my baby back. And I know that trying to keep her my baby is one of the greatest disservices I can do to her.

Monday, April 03, 2006

Yo Scientists!! Get Real!

This is Paige's "Pondering Look"

Ponder this:

Sufferers of Down's syndrome suffer mild to severe mental retardation, short stocky body type, large tongue leading to speech difficulties, and (in those who survive into middle-age), a propensity to develop Alzheimer's and Parkinson's Disease. Ninety-five percent of Down's cases result from nondisjunction of chromosome 21.

This is the first quote I found tonight when I googled the "Human Genome Project," a project that is systematically studying each chromosome to determine the genetic make-up of it. Since the 21st and 22nd are two of the smallest chromosome (The largest being the set identified as the 1st chromosome, and getting progressively smaller as the number goes higher), these were the first two that were completely "identified."

With information like this, is it no wonder the rate of abortions for women who find out their unborn child has Down syndrome is so high? The first word tells you your child will suffer. And if you don't believe he will suffer, read on, because this article reminds you again 4 words later.

The good news goes on to say your child will possibly be severely mentally retarded (and we all know what a preconceived notion of "retarded" this country has).

Then, imagine a short, fat little person with their tongue hanging out to their belly button. Oh, and if by chance they survive, they will have Parkinson's and Alzheimer's Disease.

Gooooooood Lawwwwwwwwwwd.

It scares me, and I already have a child with Down syndrome!!!

What will it take for scientists and "professionals" to realize that people with Down syndrome are so much more than this crazy list of medical "what-ifs" that they chose to hand out?

At the very least, get the simple facts straight...people with Down syndrome don't have tongues that are any bigger than anyone else's. They do, however, have smaller facial bones, and jaw bones that, coupled with low muscle tone, can sometimes make the tongue appear to protrude.Many people with DS do not have tongues that protude, and those that do are now being helped by exercises for speech and eating, that help strength those muscles.

Of course, I cannot be completely sure, because I do not have Down sydnrome myself, but I am almost positive that its not something someone "suffers" with. I make this assumption as a well-educated guess, because Paige is a happy, healthy little child that embraces life and enjoys every minute of it. She doesn't appear to be suffering from very much!

And then there's the other option...ask someone with Down syndrome...because most people with Down syndrome like to talk, thank you very much, and will tell you their opinion if you ask them.

Surviving to middle-age? There is nothing in having an extra 21st chromosome in and of itself that would shorten the life of the person who had it...there are sometimes medical issues involved with being born with T21--but we now have the tools to address those problems and I would argue that most people with T21 live well into middle age and beyond.

What if the information above read:

"People born with Down Syndrome will enjoy the world at a slower pace; they are destined to stop and smell the roses and appreciate the simpler things in life...they will embrace childhood innocence longer than most people. They will dance as if no one is watching. They will laugh with heartfelt joy when they think something is funny, and clap and yell "yaaayyyy!!!" when something needs to be celebrated.

They will choose their words carefully. They will be kind enough to show you every one of their milestones, and allow you to stop and celebrate them, without rushing to the next one, so that you can fully rejoice in the blossoming of this incredible human being.

Many people born with T21 will have gorgeous Brushfield spots on their eyes, which will look like tiny starbursts have been forever caught by them. Only those lucky enough to have been born with an extra 21st chromosome will have these.

You can probably expect to see tiny, delicate hands, and a little button nose on your little one born with T21. Oh, and don't forget that cute little space between the big toe and the next, that will leave sweet little baby-shaped footprints on your bathroom floor for many years to come every time he or she gets out of the shower.

And, with proper medical care, you will be blessed for many, many years with this incredible new person in your life."


Of course, I understand that doctors and scientists are obliged to list the medical conditions that can, and sometimes do, come with having T21.

But, wouldn't it be nice, if they would start adopting the "child first" philosophy that so many of us who are blessed with a family member with DS do?"

Down Syndrome person"

"Person with Down syndrome"

It makes all the difference...

Sometimes, its a matter of life or death...