Sunday, December 23, 2007

We have a surgery date!

So, Miss Paige will be holding out for the 2008 model of hip - her surgery is scheduled for January 4th.

I'm looking forward to the day, so that we can finally get it behind us - these last three months in a body cast were a surprise for us - and, had we known this would have happened, surgery would have taken place sooner for her, so that all of this could have been healing time.

Her surgery will be a long one - between 7 & 9 hours if all goes well. We are praying that she won't have any of the complications that we have been warned about - severe blood loss, infection, etc. And, if she does have them, we pray that the doctors who care for her will be prepared to deal with them.

Although its been quite a journey so far, I am also very grateful - it could have been worse. Through it all, Paige has remained her sweet, happy self for the most part. I have loved the extra time I have spent with her, and have felt so close to her as I laid down beside her on the floor and just "chatted" so many times.

Just as it is a celebration of humility in my church for a bishop to wash the feet of his parishioners, it is that same celebration of humility and joy that makes it so easy to care for Paige - to give her sponge baths, and to eat our dinner on the floor beside her so we can all eat together.

It was not a burden to bundle her up on that cold, cold night and put her in her wheelchair, and plow through the snow to watch the parade - it was our great privilege, and we did it with the knowledge that we are very, very blessed to be a family who loves one another, and who clapped and waved and laughed at Santa as he waved to the crowd.

Paige has been so healthy this fall - not a single runny nose, not a cold, etc. Her skin has held up well with this cast - there have not been any tender spots that we have had to worry about.

I have rather enjoyed sleeping downstairs with her - when this is all over, I will miss waking up to cover her up, or just to watch her sleep for a while, to listen to her breathing, and to lift my eyes to sky and thank God, over and over again, for the gift of her.

And, I daresay my husband has made himself quite comfortable having a room of his own for the first time in nearly 20 years!! He has set it up like quite the bachelor pad - with a stereo for his old record collection, and sprawled across the whole bed like he owns it :)

Even though he says he misses me, no one has jabbed him in the ribs and told him to stop snoring or to get on his own side of the bed, or to turn down the radio or give up some blankets for quite some time!

The saddest casualty for me has been that we have had to cut her hair - it was getting so matted and tangled when she would spend long periods of time in her wheelchair or on her back - and it was just impossible to manage - we have to wash it hanging over the bed, and she was very upset at me as I tried to brush it out every day.

So, about 12 inches of it has come off - it is no longer down past her bum, but about halfway down her back. My heart still tugs when I look at it, although she seems rather unaffected by the whole experience, except hair care is much easier now.

I am heading into our Christmas celebration with a happy heart - so grateful for so many things in my life...my wonderful community of T21 sisters, my children, my husband, my sister, my dear friends...

Sunday, December 16, 2007

Annette

Annette passed away this morning at 1 a.m., surrounded by her family. She leaves to mourn her sister, Lisa, her husband, Tom, and her two boys, Kurtis, 9, and Ryan, 7 and so many friends. Annette was part of our Trisomy 21 family - Ryan has Down syndrome.

She was a wonderful friend, wife, and mother. She will be dearly missed by so many.

Saturday, December 15, 2007

Please pray for Annette


Please pray for my beautiful friend, Annette. Pray that she is peaceful and pain free. Pray for her two young sons, Kurtis and Ryan, and her husband, Tom, as they struggle to say good-bye to her. Pray for strength for her family, and the knowledge that they are surrounded by love.

Wednesday, December 05, 2007

Paige's Hand

This is one of my very favorite pictures of Paige - it is the actual size of her hand just after her first birthday. She laid her hand on the scanner, and we took the picture that way...

I have always adored Paige's hands. My first knowledge of them was when she was in utero - when the technicians studied them so closely to see if they were clenched - a sign of Trisomy 18 - the diagnosis she was suspected of having before we got amnio results.

And the day she was born - her hands became the focus of the team of doctors awaiting her yet again, as we discovered she was born with an extra thumb on her right hand.

Just a few days later, I would cherish those hands of her, as there were so many tubes and wires everywhere on her tiny body that her hands were the only thing that I could really see or reach for. How I loved staring at those hands...

Through her first years, we spent quite a few nights in the hospital, where I would sleep next to her, and her tiny hand would reach for mine in the dark. From a very young age, I would only have to whisper to her, "do you want to hold hands" and that sweet hand would come my way...

And, indeed it is her hands that have taught me some really great lessons. Not only because of the things they have done, but the things they have struggled to do as well. She uses her hands to speak, and entertains herself often by watching her hands dance in the sunlight.

Its those lovely hands of hers that have kept me grounded on this journey. They remind me that God did not bless me with her in order for me to prove to the world that I could raise the smartest, most accomplished, most impressive child with T21 ever.

No, His intention was completely different.

He wanted me to know unconditional love for my child. To feel my heart fill with joy every day at the sheer sight of her. He wanted me to be a messenger of this joy; to share that joy with others.

He does not want my life to be measured by success in the usual way we measure success - by a career, or by finances, or accomplishments. Nor does He want me to judge the worthiness of her life in that way.

Instead, He sent her to me so that I could learn the real values of life - those of compassion, selflessness, and yes, sometimes humor.

Those lessons help me to be a better mother to both of my children; as I fight my own perfectionism and realize that they both are gifted in their own way, that they both will soar and they both will coast - that its a natural progression of our lives.

Paige uses those hands to express her love - when you sit with her, or lay beside her, she will ever so gently rub your face, touch your hair, and explore you in a way that only an innocent child can. She particularly loves to see if you have earrings on, and loves the feel of them as they rub against her hand.

Right now, she is using her hands to harass the dog, who is trying to feign sleep under the coffee table, in the furthest corner his 90-lb body will allow him to be. She commando crawls after him, and squeals in this high pitched way that only he can hear, lol

In the next couple of weeks, I will once again be whispering, "do you want to hold Mommy's hand" to her, as she wakes up from anesthesia, somewhat confused and looking for comfort.

And, with any luck at all, when I am old and my days are coming to an end, it will be her who whispers in my ear, "do you want to hold my hand?"

And then...then...I will remember once again that the celebration was the journey, not the destination. That however ordinary anyone else in the world might have judged us to be, we have been quite extraordinary, this team of her and I.

Wednesday, November 21, 2007

Shameless Plug!

Come and visit us! My sister will be coming up this weekend and we will be going to a craft fair with everything you see listed here, and lots more! Check it out...

Monday, November 19, 2007

What Do You Do When You're Stuck in a Body Cast?


Why, you decorate, of course!! (Pardon the mismatched clothes - we were halfway through getting dressed!)


Tuesday, November 13, 2007

Sleeping Beauty...

Paige fell asleep on the couch - its pitch dark in the room except for the light of my laptop. I could barely see her face when I took this picture - but I'm glad I did.

So pretty.

A Glimpse of Sweet Baby Cole!

Congresswoman Cathy McMorris Rodgers gave birth to a beautiful little boy named Cole a few months ago. Cole was born with Down syndrome, and recently, his Mom and Dad spoke out on the joys that raising Cole has already brought them.

We were treated to seeing their family, in this interview. Cole is breathtaking, and his Mom spoke with poise and pride about her son.

One of the most important things Congresswoman Rodgers said was that it makes all the difference to hold that baby in your arms, to look at him, and see him as a person.

Wow.

That is so true, and something that so many advocates for people with Down syndrome try to tell expectant parents when they receive this diagnosis. Before birth, Down syndrome is a list of traits and characteristics and predictions, piled on with yet another list of potential health problems.

After birth, Down syndrome very quickly takes its rightful place in your life - a small part of who your child is, regardless of health or ability.

Suddenly, its a tiny little girl or boy with blue eyes or brown eyes, a funny smile, a tuft of hair. There's milestones to be celebrated, no matter when they arrive. There are birthdays and laughter, and trips to the Zoo. There's first tastes of ice cream, and a nervous first trip to playgroup. There's friends and birthday party invitations, and swimming in the pool.

There is joy.

Joy.

Monday, November 12, 2007

Memory Lane!

A sentimental journey...excuse the picture quality - it was pre-digital!!!

Dakotah visiting us just hours after Paige was born - before we found out how sick she was.


Baptizing Paige just before surgery - my father hated this picture of me, lol - a bit pale and puffy from crying and giving birth!


Six months old - unplugged, and 10 big pounds!

Saturday, November 10, 2007

So There!

In the wake of my mother sending my sister an article to forward to me on how to "cure" Down syndrome (another ranting post for another day), I offer my readers this...

http://hightechbiz.com/pub/genius.htm

My Gifted, Talented, Genius Daughter Paige - she meets all of these and more:

24 Qualities That Geniuses
Have in Common

The worlds greatest geniuses have all had 24 personality characteristics in common and you can develop the same traits yourself, says an expert.

"Most people have the mistaken idea that geniuses are born, not made", declared clinical psychologist Dr. Alfred Barrious, founder and director of the Self-Programmed Control Center of Los Angeles and author of the book, Towards Greater Freedom and Happiness.

"But if you look at the lives of the worlds greatest geniuses like Edison, Socrates, DaVinci, Shakespeare, Einstein, you will discover they all had 24 personality characteristics in common.

"These are traits that anyone can develop. It makes no difference how old you are, how much education you have, or what you have accomplished to date. Adopting these personality characteristics enables you to operate on a genius level."

Here are the Characteristics Dr. Barrios lists, which enable geniuses to come up with and develop new and fruitful ideas:

  1. DRIVE. Geniuses have a strong desire to work hard and long. They're willing to give all they've got to a project. Develop your drive by focusing on your future success, and keep going.
  2. COURAGE. It takes courage to do things others consider impossible. Stop worrying about what people will think if you're different.
  3. DEVOTION TO GOALS. Geniuses know what they want and go after it. Get control of your life and schedule. Have something specific to accomplish each day.
  4. KNOWLEDGE. Geniuses continually accumulate information. Never go to sleep at night without having learned at least one new thing each day. Read. And question people who know.
  5. HONESTY. Geniuses are frank, forthright and honest. Take the responsibility for thins that go wrong. Be willing to admit, 'I goofed' and learned from my mistakes.
  6. OPTIMISM. Geniuses never doubt they will succeed. Deliberately focus your mind on something good coming up.
  7. ABILITY TO JUDGE. Try to understand the facts of a situation before you judge. Evaluate things on an opened minded, unprejudiced basis and be willing to change your mind.
  8. ENTHUSIASM. Geniuses are so excited about what they are doing, it encourages others to cooperate with them. Really believe that things will out well. Don’t hold back.
  9. WILLINGNESS TO TAKE CHANcES. Overcome your fear of failure. You won't be afraid to take chances once you realize you can learn from your mistakes.
  10. DYNAMIC ENERGY. Don’t sit on your butt waiting for something good to happen. Be determined to make it happen.
  11. ENTERPRISE. Geniuses are opportunity seekers. Be willing to take on jobs others won't touch. Never be afraid to try the unknown.
  12. PERSUASION. Geniuses know how to motivate people to help them get ahead. You'll find it easy to be persuasive if you believe in what you're doing.
  13. OUTGOINGNESS. I've found geniuses able to make friends easily and be easy on their friends. Be a ‘booster’ not somebody who puts others down. That attitude will win you many valuable friends.
  14. ABILITY TO COMMUNICATE. Geniuses are generally able to get their ideas across to others. Take every opportunity to explain your ideas to others.
  15. PATIENCE. Be patient with others most of the time, but always be impatient with your self. Expect far more of yourself than others.
  16. PERCEPTION. Geniuses have their mental radar working full time. Think more of others' needs and wants than you do your own.
  17. PERFECTIONISM. Geniuses cannot tolerate mediocrity, particularly in themselves. Never be easily satisfied with your self. Always strive to do better.
  18. SENSE OF HUMOR. Be willing to laugh at your own expense. Don't take offense when the joke is on you.
  19. VERSATILITY. The more things you learn to accomplish, the more confidence you will develop. Don’t shy away from new endeavors.
  20. ADAPTABILITY. Being flexible enables you to adapt to changing circumstances readily. Resist doing things the same old way. Be willing to consider new options.
  21. CURIOSITY. An inquisitive, curious mind will help you seek out new information. Don't be afraid to admit you don’t know it all. Always ask questions about things you don’t understand.
  22. INDIVIDUALISM. Do things the way you think they should be done, without fearing somebody's disapproval.
  23. IDEALISM. Keep your feet on the ground -- but have your head in the clouds. Strive to achieve great things, not just for yourself but for the better of mankind.
  24. IMAGINATION. Geniuses know how to think in new combinations, see things from a different perspective, than anyone else. Unclutter your mental environment to develop this type of imagination. Give yourself time each day to daydream, to fantasize, to drift into a dreamy inner life the way you did as a child.

Friday, November 09, 2007

I Got My Hair Cut!

On a whim, I said, "Cut it all off - I want it short." I figured that I just wouldn't want to deal with it over the next weeks, especially if we have a hospital stay (which we might just avoid after all!)

Now, I kinda look like a cross between my (MUCH) older sister and this guy:













Thursday, November 08, 2007

Ok, Guys - I've Entertained You!!

Now its your turn to entertain me!!! I posted 31 posts in 31 days for October! I have been getting 40+ hits every day on my blog, but NO comments. ***Aren't you intrigued when someone seems to read your blog often, but you don't know who they are?!?!

Say hi - I love making new friends!


***Edit - Ok, so I got some comments, lol...just not 30 or 40 a day...I live with a teenager - I exaggerate ;)

Friday, November 02, 2007

Happy Birthday Annette!!


Please hop on over and wish my friend Annette a Happy Birthday today! You are an amazing woman!

How Sweet and Fun!

I haven't had this much fun singing the National Anthem in like...well, ever.

Go Red Sox!!

Tuesday, October 30, 2007

A Store That Gives Back

Check out The Polkadot Platypus. It has a beautiful slide show of babies with Down syndrome on its front page, and a portion of all sales goes toward charities that support Down syndrome.

Does anyone recognize any of the babies in this slideshow? How can there by that many cute babies with T21 out there, and I didn't know about them!!! Just too precious!

Things I've Learned From Paige


In honor of the last day of "Get it Down" - 31 posts in 31 days for Down syndrome, I thought I'd share some very cool things that Paige has taught me.

Thirty One Things Paige has Taught Me

1) Its more important to sing when you're happy than it is to worry about what other people think of your singing.

2) Communication is 95% body language and 5% spoken word. Those percentages are even greater when you use your hands to speak.

3) Favorite stories are funnier if you change the tone of your voice every time you read them.

4) When black is your favorite crayon color, its o.k. to color Valentine's hearts with them.

5) If you're happy and you know it, clap your hands.

6) People need to hug more.

7) Sunshine feels warm on your face, and makes wonderful shadows.

8) Friends just know.

9) Dancing does not require standing on your feet.

10) Batteries are an awesome Christmas gift - favorite old toys come to life again!

11) An 80 lb. dog and a 60 lb. kid in a cast can both fit under a coffee table.

12) The world is more beautiful when seen through Brushfield spots.

13) A set of markers and a naked belly make for great tattoos.

14) Mimicking Daddy's snoring does NOT wake him up.

15) Words are important - even when you can't speak.

16) Water splashes, leaves crunch, snowflakes taste good on the tongue, and spring flowers smell nice.

17) Big sister's rooms are full of wonderful treasures.

18) If you say hi enough times, eventually they'll say hi back.

19) Peers come in all sorts of shapes and sizes, and ages and abilities.

20) It does take a village to raise a child.

21) Big sisters are important.

22) Sometimes you can have a "first" more than once - we're looking forward to first steps again!

23) Don't believe everything they tell you.

24) We all matter.

25) You can't tell a lot about a person from their karaotype

26) You can tell a lot about a person if you look in their eyes, smile, and let them show you who they are.

27) Its kinda fun to do the impossible.

28) Blessings sometimes come in disguise - and its great fun to unwrap them.

29) Sometimes you gotta take life one day at a time.

30) Sometimes, you wish those days would last forever.

31) Live joyfully.

One of My Favorite Shows of All Time!



The Great Pumpkin is on ABC tonight! I so love Peanuts shows - these are the ones I remember from my childhood - when there were no such things as vcrs or the ability to watch a show whenever you wanted. My dad and I looked forward to these seasonal favorites, and always watched them together.

Monday, October 29, 2007

Its a Good Life

One of the good things about being 40 (o.k. 40ish) is that you really do gain a bit of life wisdom along the way.

One of the lessons I've learned is that, at least for me, life is very cyclical. This lesson is tremendously helpful to me when I'm feeling a bit sorry for myself, or overwhelmed with life in general.

Last Monday, I was really feeling like I was holding on by my bootstraps. My brain was working 1,000 miles an hour, but my body was protesting. I was in that kind of mood where, if anyone had been nice to me, had offered a hug, I would have broken down and sobbed for hours.

Not a lot has really changed since last Monday, except my attitude.

When I get in a funk like that, I know that I really just need to ride it out and it will get better.

Today, I feel happy, and peaceful - ready to face some challenges that are ahead of us. My kids are healthy - except for that danged body cast - and I have a warm safe place to live, with food on my table for dinner - and that is enough for me today.

We really are obliged to live good lives. Its how we honor those whom we have loved and lost. Its how we thank God.

This week, one of Paige's caseworkers passed away from ovarian cancer. She was just 52, and has her first grandbaby on the way, her other daughter is getting married in the Spring.

She was such a kind person, and her death was sudden - she had been doing well with her treatments until just a couple of weeks ago. She touched many lives through her work, and through her friendships.

The lines for her calling hours were out of the building and down the street yesterday. This morning, her family will say their final goodbyes to her. They will mourn, and weep, and feel incredibly sad. I imagine there will be times when they want to crumble, and not go on.

But, they will go on. And they will welcome that new baby, and the new husband, and their deep sadness will change to a longing for her to see them live their best lives. The memories of her will become stories for her grandchildren to be shared and cherished.

My thoughts and prayers are with them today - may they be blessed with the ability to do it one day at a time...

Could This Be True?

Dakotah was at a friend's house this weekend, looking at the Guinness Book of World Records. One of the records she read about was the youngest child to ever have their gallbladder removed.

It said the child was six. That can't be possible???

Paige had hers out at 2 years, 11 months old - is she a record holder??!?!

Somehow we knew if she ever got her name in the book it would be for something like this, lol.

Saturday, October 27, 2007

Top Five Halloween Candies

According to my family. (this idea stolen from Jennifer at Pinwheels)

Wayne: (he's such a Canadian!)

1) Peanut Butter kisses (those chewy things)
2) Coffee Crisp
3) Peanuts in a shell
4) Mr Big
5) Aero

Betsy:

1) Peanut Butter Cups
2) Nestle Crunch
3) 3 Musketeers
4) Snickers
5) Candy Apples (only ones we make ourselves though!)

Dakotah:

1) Kit Kat
2) Coffee Crisp
3) Aero
4) Hershey bar
5) Peanuts in a shell

Paige:

1) Red m & m's
2) Yellow m & m's
3) Orange m & m's
4) Green m & m's
5) Blue m & m's

Kirby:

1) Pupperoni
2) Snausages
3) Beggin' Strips
4) Rawhide
5) Toilet bowl water

Friday, October 26, 2007

90% of Women Prenatally Diagnosed with T21 Abort

That seems to be the statistic we all know. I wonder where that statistic comes from - is there some sort of registry where everyone who aborts a baby with Trisomy 21 registers? Are doctors obligated to report this to a statistics office?

I heard a psychiatrist at our Children's Hospital speak a while back - he has a nearly grown-up daughter with Trisomy 21. He believes this statistic to be wrong and quite misleading. He thinks that the percentage of women who abort is actually lower, more like 60% than 90%, and that in the last 20 years or so it has steadily gone down.

He says that we, as a society, are becoming more educated, have more resources available to us, and are questioning science and all its predictions much more than our mothers before us would have.

I think this may be true. With all of the prenatal testing available now, we are faced with questions of morality that our parents were not. But facing those questions may challenge us to find the answers to them as well.

I don't blindly believe every word that comes out of every doctor's mouth as gospel. Like most women my age, "google" is my friend - and I research and read and learn and ask questions about things.

I know better, so I do better.

My mother would have never questioned the family doctor who delivered me. In fact, I can remember going to his office, which was part of his house, after dinner for an appointment as a child - I often had tonsillitis - and having him offer my mother a drink while they chatted! And always, always, she would stop for a smoke with him before we left with my prescription for penicillin.

He could have told her that her baby was delivered by a stork when she was asleep (as she was put asleep to deliver!) and she probably would have believed him.

I don't know if that 90% statistic is right or not. I'd prefer to believe the doctor who says it is not. I'd like to think we are evolving, and would not subscribe to chromosomal eugenics.

I'd like to believe that 90% of women prenatally diagnosed with Trisomy 21 would research, ask questions, and meet families living with T21 before they made any decision.

Here's another funny fact about statistics - they really don't mean much unless you are one of them.

10% or 40% - I'm glad I'm the statistic I am.

Campaign for Down syndrome

If you've been blogging for Down syndrome this month, please use one of your posts to link to this very important website.

Perhaps the single most important thing we can do as advocates for our children is to fight for their very right to live.

Campaign for Down syndrome.

Paige is beautiful and smart and worthy. For those of you who will take the time to know her, she will teach you great lessons.


Thursday, October 25, 2007

Sweet Noah

Today, my dear friend Carol stopped by for a visit with Paige and me. It was so nice to see her - she always has a great smile on her face, and a big hug for me. Carol is Livee's Mom.

Carol also has six other kids besides Livee. The next little one in age is Noah. Cute little Noah, with a tiny sprinkle of freckles and a twinkle in his eye - quick with a giggle and still so very sweet and innocent.

Noah's still young enough that he has that adorable way of saying words that just makes you smile, and he calls his baby sister "Wivee."

In Noah's kindergarten class, there is a little girl who has some developmental delays so she is not walking or talking yet. Noah just adores her and loves to push her around the classroom and help her out.

While he was planning his birthday party, he said, "If I'm too busy to push her, Nick (his older brother) can push her for a while." So cute...

Carol said they were making applesauce in class last week, and each child was to bring one apple in to school. Noah went to get his before school, and he comes back with two. Carol says to him, "I thought you only had to bring one apple to school today."

Noah says, "Mommy, J can't talk yet to tell her Mom that she needs an apple so I'm bringing one for her."

Today's life lesson comes straight from Noah - tomorrow when you start your day, pack an extra apple, whether it be an actual apple, or just a smile or a kind word, and bring along for someone who might forget to bring theirs...


You're the man, Noah!

Tuesday, October 23, 2007

Paige Went To School Today!!

Yay!! We were so happy to bundle up and walk to school, even though it was pouring rain, and we were soaked when we arrived. We must have been a sight to see - Paige laid out straight in her wheelchair with blankets covering her entire body, her brown converse high-tops peeking out the end, and me, mopped down like a wet puppy, pushing her along.

But - we had smiles on our faces, and that's what mattered! Paige was so happy to see her friends again - to go into school and just be surrounded by everyone happy to see her. There's still lots of logistical things to figure out, but we stayed for two hours or so, and then bundled up and came home.

Her little soul needed a happy day - I'm glad she got it!

Monday, October 22, 2007

Ack

Ugh - as soon as I hit enter after that last post, I wanted to kick myself.

Obviously, the challenges involved with Paige having to be casted are Paige's challenges - not mine. Its Paige who's life is turned upsidedown, who is carrying that big heavy cast around with no ability to really understand why. She's the one missing her school friends and her daily routine. She's the one who will have to endure surgery and the related pain and further casting.

I gladly and humbly care for her in any way she needs. I fully understand the toll it takes on her is greater than the one it takes on me.

She does it all with a quiet, gentle dignity that never falters in her ability to love and be affectionate. The least I can do is return that grace.

I'll get over myself by morning, I'm sure.

*Yawn*

I know I am a day late on my Get It Down venture, but I have been hit with an incredible wave of exhaustion that has just taken me over.

We had a busy weekend, with Dakotah inviting 20+ friends to McMaze last night for her birthday party.

My sister and her husband were also here to visit from New Hampshire, so it was very nice to spend some time with them. And George managed to figure out how to fix Paige's wheelchair so she can recline in it and I am still able to push it - before, I was pushing at about knee level when she was reclined - not so easy on the ol' back!

Hopefully, she will be able to go back to school and spend some time there.

After Kathy and George left, I went to lie down in my bed (the first time I have been in my bed since October 2nd!). I intended to sleep for an hour, and then to get up to go to Special Olympics, but I literally could NOT move - I was aching, and shaky, and tired in a way that made my whole body feel heavy.

I slept for nearly 4 hours - probably the longest stretch of sleep I've had in the last 3 weeks, and since I've gotten up, I've barely been able to function - I just can't shake this fog.

I have so much on my plate over the next few months - I need to shake this exhaustion off and keep going, so I'm hoping this wave of it today will subside very quickly.

My day tomorrow is already full with a running list of "to do's" and people to call - organizing our life right now is a full time job.

Lord, let our reward for this hard work and these challenges be a little girl who gets up on her feet and walks by her birthday...

Friday, October 19, 2007

Two Wonderful Businesses

In the spirit of Down syndrome awareness, please visit Shelley's website to read about two very cool businesses that are run by individuals with Down syndrome.

All of us need purpose in life and its so important that we use our creativity and explore all different types of businesses and vocations for our children with Down syndrome.

Please check these out - what a great way to get started on your Christmas shopping!

Wednesday, October 17, 2007

Happy Birthday Dakotah!



Wow - 14 years old!!! Have a great day, sweetheart...I love you!

Just for you - from our favorite cake maker!!

Don't believe it until you see it!

So, at our visit to the Orthopedic Surgeon last week, we learned that Paige will be in a body cast for much of the winter, with probably two major surgeries mixed in the middle somewhere.

Our surgeon is still very hesitant to operate on her, as he is unsure of the success of the surgery. However, we are pretty much at the point where it has to be done.

As he was delivering what seemed like bad news after bad the other day, one of the things he said was that his main goal for this surgery will be for comfort - that Paige will not have to experience the level of pain involved in dislocated hips again. He reminded me that he does not know if she will walk again...

The reality of that hit me, and I was quite sad to think of that. Its crazy how much of her world has to be brought to her when she has no mobility. I want her to retain her curiosity - to be able to explore the world at will.

Still, I am immensely grateful that what we are dealing with right now is just a physical problem. We will adjust and do what we must do to get through this, and we will be just fine.

But, my crazy little girl is just rolling her eyes at us - we have already been told once she would never walk, and she has been walking for four years already.

As I was telling Wayne about our appointment the other night, he had Paige standing up, balancing her a bit, and letting her legs get a little workout. Well...just like that, she springs forward, and walks about 5 steps to the couch all by herself, waddling along with that heavy body cast on her.

I think instead of never seeing her walk again, we are going to be blessed to celebrate "first steps" all over again, and oh, how glorious they will be.

Paige Makes Me Think

Life with Paige is a wonderful series of do's and re-do's, and plans and...things that are not planned.

I'm a researcher - a studier of information, and sort of a take-charge kind of person when it comes to Paige. I've read so much about her educational rights, and the responsibilities of those who are part of her educational team. I've made presentations, and worked hard to be very involved in her needs.

Occasionally, her medical issues have taken precedent over her developmental goals. Right now, it is very challenging to meet all of her needs. Being in a body cast, probably until the end of March, presents just physical challenges - how do we get her to school, keep her interactive with her peers, etc. I think she's probably a bit more vulnerable to colds and such as she is basically immobile. And we have lots of doctors appointments that we must make.

I think its very important as a parent of any child, but especially a child with exceptional needs, to be conscious that there is not a cookie cutter solution to educating our kids. Their needs are different; their goals are different, and how we meet those is sometimes a series of trial and error and tweaking that never ends.

Going to IEP meetings is always interesting. You never quite know who is going to show up, and who isn't. A collective team of "experts" and me, just the Mom, assemble to decide the basics for Paige's next few months of school.

After a few years of these meetings, I have some tips for the experts when dealing with me.

1) Don't assume my vision for Paige's education is exactly the same as the mother in the meeting before me.

2) Especially don't assume that our game plan is exactly the same as the other 50 or so children with Down syndrome in our school board.

3) Don't come into the room prepared with an IEP already written. I want to brainstorm, to throw around some ideas and situations, and make a collective decision about what to do next.

4) Don't feel as if you have to be defensive to me - I am not there to attack, merely to challenge and do the best for my own child.

5) Let me ask questions - will this or that work, and why or why not?

6) Ask me questions - what is my vision for Paige's future? What are my hopes and goals for her?

7) Make me aware of ALL the resources that are available, not just personnel, but websites, books to read, contacts to make.

One of the most flattering things anyone in our IEP meeting can do for me is to be interested. If I am bringing in a book that I would like you to look at, or making a suggestion that I would like us to explore, it is because I have already read the book, or thought a great deal about the suggestion, and feel that it would be of benefit to Paige, and often, her classmates.

I am, at the very least, an equal team member when it comes to educating my child. My beliefs for her education have changed and evolved a great deal over the course of her school career. I am acutely aware that she is part of an entire group of children that you are trying to educate, and my desire to have her be a part of that group will sometimes be of great benefit to you. I am quite willing to look at the total picture of a classroom, and modify it accordingly not just for the benefit of Paige, but for the benefit of those children who will learn great lessons from Paige.

And last of all, don't even dream that I am going to sign the IEP during the course of our meeting. I want to absorb it, perhaps tweak it, make sure nothing has been forgotten on it, and be fully comfortable with it.

It is my right as a parent to demand this of you, and your responsibility as an educator to provide this to me.

Monday, October 15, 2007

Today I Was A Regular Mom!

So, Dakotah was awake all night last night with a toothache. I couldn't see anything - the tooth looked fine. She has really beautiful teeth, and this is the first time she has ever had any teeth problems.

I'm sure she was in pain, but she used her expertise as a Drama Teen to make sure if she was restless, the entire house would be awake to share her misery. Needless to say, I'm on about hour 36 of no sleep!

We were able to get her into the dentist today, and she has an abscess on the root of her tooth - from flossing too vigorously, he said. So, after a few days of antibiotics, she is off for her first root canal.

Just getting out of my house is a task - Wayne is at work, and I can't transport Paige anywhere...so I'm kind of in a constant state of "who can I call" when I have to deal with life like this.

One day at a time.... :)

Sunday, October 14, 2007

What An Uplifting Day!!

My amazing friend Camille has started a Special Olympics swim team! Today was our first official day. Paige couldn't participate because of her cast, but I went along to help out.

I got to meet lots of new people, and it was amazing to see how well the kids took to the pool. A couple of the kids are ones who go every week with us, but some of them were new to the water, and to each other.

I had lots of fun with Jacob, a little boy with T21, who is just one month older than Paige. Boy, oh boy...anyone who says that all people with Down syndrome are alike only need to meet Paige and Jake...they couldn't be more different!

What a sweetheart Jake is - with a shy little smile, he was a bit nervous in the water, but he tried anything I asked him to. His speech is soooo amazing - he speaks full sentences and is very easy to understand. Other than some physical features of a child with T21, you'd be hard pressed to convince me!

Next week, Jake is going to blow some bubbles in the water for me!

And Emma, Camille's daughter, entertained everyone as usual. She's such a love - and its so funny to see her jump into life (and the pool!) so gloriously.

It was amazing to see Patrick swim the length of the pool, and to hear everyone, both in the pool and out of it, clap and cheer for him. His face was priceless when he came up out of the water and looked around and realized the applause was for him.

There was kind of a funny moment when one of the Moms was speaking to Camille and me at the end about all of our kids. She adopted her son, and he has some mild delays from his early rocky beginnings in life. She looks at Camille and says, "I think Down syndrome is happier and easiest to raise."

LOL - I could see Camille's face as she tried to formulate an answer to that! Emma is a busy little girl who has an opinion on much of her day!! Although she is certainly happy and loving, she also knows what she wants, and she isn't afraid to tell Mommy what that is!

The Mom said, "Down syndrome doesn't have tempers like my son has." hahahahahaha....

We all have so much to learn from one another - I can't wait until next week!

Friday, October 12, 2007

You Gotta Have Friends (and sisters!)

This post is dedicated to my friends. Like my sweet daughter, I am a product of inclusion as well. As important as it is for her to have friends who are "typical" and friends who have a little extra just like her, it is also important for me to have the same.

This week, my friends, Camille and Carol, who both have daughters with Trisomy 21 have shown up at my house, a full meal prepared and delivered to our family. Its wonderful to have friends like them who have been just where our family is right now - taking it day by day, grateful for the good days, and getting through the not so good ones.

With them, there are no airs necessary - no judgment calls, no need to explain - simply the need to be. Carol always tells me that her daughter Livee can tell how much I love her, that she "gets" that I see her as perfect and whole and amazing just as she is. And there's something to that - I know just what she means.

And Camille - well, if I needed her, I wouldn't get the phone hung up before she would be at my door.

I hope these two friends of mine know I would do the same for them in a moment.

This weekend, a whole group of my online friends, all whom have kids with Trisomy 21 are meeting in Indiana for a real life get together. I wish I could be there with them, many of them I've known since either Paige or their little ones were born. But just having them all in the same place, celebrating this wonderful life we live, will give us all strength.

And two other friends of mine, both named Julie, have been invaluable to me this week. One Julie has loaned me her van to transport Paige to the hospital - no small task when she is wheelchair bound right now.

My other friend, Julie - well, her sole task in The Adventure of The Body Cast is to keep me sane. She is assigned to making me leave the house for MommyTAG (Tim Horton's and Gossip) every week, and for just stopping by to hang out once in a while.

She has checked in with me every day, just chatted, and kept me normal. Well, as normal as I've ever been! She even helped fend off my psychotic neighbor who came bursting through my front door the other day.

And...my sister - 250 miles away - who immediately steps into "what do you need" mode whenever anything goes wrong. Several times a day we email each other back and forth, and keep in touch with one another. I miss her, and wish we weren't so far apart from one another. I'm so proud of her, and so happy the good Lord gave her to me as a sister. Otherwise, I would have had to hand pick her as a friend.

This one's for all of you...



Thursday, October 11, 2007

Get Over Yourself

As Nic said most of accepting the diagnosis of Down syndrome is just getting over yourself.

I've never taken myself too seriously, so perhaps that's why it was quite easy for me to accept.

We all know how it is before we have children - we think we are going to have kids that say, "yes, ma'am" to us, and please and thank you instead of "give me!" We think they will be cute and smart, and ahead of all of their peers in whatever they do. We devour baby books because we know our kids will most certainly be ahead of all those charts.

We know for sure that our kids will go to bed promptly at 7:30, and never, ever through a temper tantrum in a store. We'll sign them up for baby yoga, and Mom and me swimming lessons, and gymastics, and all of the other Moms will be a little jealous at how well our kids perform.

Our little girls will be ballerinas, and our little boys will play Little League Baseball.

We see other children in public, and silently tsk tsk them under our breaths - what the heck are those parents thinking? Don't they know anything?

When school starts, our child will be the teacher's favorite, and will get invited to all of the birthday parties.

Life is smooth sailing, save for an ear ache or a runny nose here or there.

O.k....are we done yet????

Get over it peeps - even "generic" kids as a friend of mine says, are going to surprise the daylights out of us when we spend all night up with a crying babe, or when we can't pick our 18 month old up off the floor at the mall because he can't buy a Thomas The Tank toy.

Having a child with Trisomy 21 sometimes takes some getting over oneself. We have to put aside all of those lists we have made in our heads about the "perfect" child and just get on with it already.

There may be medical problems, some minor and some not so minor. There may be delays, some slight and some not. There will definitely be joy - small daily joys, and shout-from-the-rooftop joy.

Now, I am SO not one of those pre-moms who think I know everything about parenting. I've more become the mom whom my 14 year old groans in despair about when I *gasp* speak to the check-out person in the grocery store, or sometimes plops down beside Paige when she decides she has had enough walking, and wants to just enjoy the scenery.

I've found I quite like scenery too. I don't much care about toys that have age recommendations on them. Our qualifications for a really good toy is one that Paige is curious about, one that brings a smile to her face, or one she lifts to us to explain to her how to make it work.

I don't much care what people think when Paige stops and taps her feet together like Dorothy in the Wizard of Oz, because I know that when she's wearing her Converse high-tops, she is just making sure the circles with the stars in them on the inside of each shoe still touch when she does that.

We still go to swim class, and Paige's very favorite swim partner is still ME, her Mom. How cool is that...from Mommy and Tot to Mommy and Tween...

I've gotten over myself about parenting a perfect child. Lord knows both of my kids have taught me that.

And, how the heck would I ever be able to parent a perfect child anyway - wouldn't that require a perfect parent???

Wednesday, October 10, 2007

I Wanted To Learn...

My friend Nic is dedicating her "Get it Down" posts for October to sharing her story of how she came to find out Tarenne would be born with Trisomy 21, and the days that followed that...

I think she's a bit of an over-achiever, because while the rest of us have taken on the challenge of posting once a day, and sometimes finding it difficult to do that, Nic is sometimes posting several times a day, lol. Show-off! :)

In her post titled, "I Wanted To Learn", Nic says two things that really struck me. The first was, "I wanted to learn, but any true knowledge would not come until after Tarenne was born." How true is that! Honestly, how can we possible think that a chromosomal analysis on a piece of paper can do anything more than well, tell us how many chromosomes our baby has.

There is just one way to answer all of the questions that will come to you if you are given the prenatal diagnosis of Trisomy 21. And that way is to continue your pregnancy, and have your baby. You cannot know your baby unless you hold him or her in your arms. You cannot know how they will soar unless you are willing to offer them wings to fly.

You cannot know what you yourself are capable of until you allow the challenge into your life.

Unfortunately, many babies with Trisomy 21 who are prenatally diagnosed are terminated before birth. I've met people who have aborted, and certainly read many stories about people who chose abortion.

Very consistently, these women will extol stories of how their unborn child had "severe" Down syndrome, or horrible physical problems incompatible with life. They will speak with a wisdom they cannot have - and tell people that although some babies with Trisomy 21 do well, the one they aborted certainly would not have.

I've read accounts that say that we, the parents of children with T21, only share the "good stuff" and the people with T21 that we read about are the exception, not the rule for people with T21.

I am highly insulted by that, as I feel like I share a very honest account of Paige's life. I don't sugar coat anything, and she certainly isn't excelling over and above every child ever born with T21.

In fact, I could easily be one of those mothers who comfort themselves with believing I would give birth to a child incompatible with life...because I was told that was the case, and I carried Paige for the last three months of my pregnancy believing that.

But more than believing that, I believed in us - her and I as a team. And I knew we could get through whatever the good Lord handed us. I knew I would be grateful for every single moment with her.

Today, my "incompatible with life" little girl is 1o years old - and is pretty darn full of life. Last night she and her daddy laid on the floor and had a good ol' pillow fight.

As Nic also said in her post, she had to "get over herself." That's exactly what its all about - we have to get over ourselves if we are going to joyfully jump into this journey...

Tomorrow, I will write more about getting over myself...

Tuesday, October 09, 2007

Things Are Falling Into Place For Us

I have no idea what date on the calendar it is, but we are now on day five of Paige's body cast. Today was really productive for us.

Paige has been sleeping on an air mattress on our living room floor, and I've been sleeping on the couch next to her. We are going to get a bed that will be the same height as our couch, so that I don't have to pick her up from such a low level.

Tomorrow, we will have a wheelchair delivered that will help in transporting Paige. Right now, we are stuck to even move her around, as it is very awkward to pick her, and her cast up. It will recline in a way that Paige can actually sort of sit for a while. Right now, she is flat - either on her back or her tummy.

Last night, we all had Thanksgiving dinner on the living room floor, so Paige could join us. It was great fun!!!

And getting the wheelchair will help me to go to drs appointments with her.

So...we are just waiting on a little tub that will allow me to wash her waist length hair! Yahoo!!!

Dakotah has decorated her cast already - she has a "tattoo" of three little butterflies on her back - haviing a cast does not excuse one of being trendy!!

So five days down, heaven knows how much longer to go~~~






Monday, October 08, 2007

No Better Way to Celebrate Down syndrome...

than with Gifts - This is a most awesome book! I know many of the contributing Moms to this book, and recognize so many of the beautiful little faces. The very first face you see is my buddy, Nash!

Thanks to Rebecca for making this montage!

Sunday, October 07, 2007

One Red Paper Clip!


I'm sure some of you have heard of Kyle McDonald who traded one red paper clip for a house. In just one year and 14 trades, he started with a red paper clip, traded it up for a fish pen, traded that up for a drawer knob, traded that up for a coleman stove, and well...you get the idea.

I think Kyle is a bit of a lamer, who readily admits he started this because he really didn't want to actually hold a job, but his idea took off, and he has had a media frenzy surrounding him. He has also written a book about his experience.

It is a funny story about how imaginative people can be, and how life evolves.

I've thought about Kyle's story, and I think I've traded one red paper clip too.

1) I started with a ultrasound showing no kidneys or stomach in my baby
2) I traded for an amnio
3) I traded the amnio for the knowledge that my baby would have Trisomy 21
4) I traded the knowledge of Trisomy 21 for the arrival of a screaming baby
5) I traded a screaming baby for many corrective surgeries to ensure her future
6) I traded surgeries for Physio, Occupational, and Speech Therapy
7) I traded Therapies for new skills learned like Sign Language and walking
8) I traded Sign Language and walking for even more independence
9) I traded that independence for an admission to school
10) I traded that admission to school for a program specially designed to help Paige reach her fullest potential.
11) I traded that program for a happy, thriving little girl who learned to match her colors and recognize letters and numbers
12) I traded this happy thriving little girl for a girl who learned to swim and ride horses
13) I traded that athletic girl for a cuddly, affectionate almost young-lady whom I adore.
14) I refused further trades.

There...beat that Kyle.

Saturday, October 06, 2007

Twenty One Food and Beverages I'm Grateful For

If any of you have ever spent any time alone in the hospital with your children, you will completely understand this light-hearted post! As Paige was not able to eat or drink anything at all yesterday, I also did not, as I didn't want to leave her, and didn't want to eat or drink in front of her.

And today I was busy caring for her, so food and drink were evasive as well.

Needless to say, I was pretty hungry and thirsty after nearly 48 hrs!!!

So here was what I thought of as a distraction from our medical dramas on the way home.

Twenty-one Food and Beverages I'm Grateful For:

1) Hot Coffee
2) Diet Pepsi
3) Grey Goose Cosmos
4) White Wine
5) Zinfandel
6) Fresh strawberries dipped in cream cheese & strawberry yogurt dip
7) Hot buttered toast
8) Triple Chocolate Utopia from DQ
9) New York Super Fudge Chunks of Chocolate by Ben & Jerry
10) Cheese fondue
11) Warm Apple Crisp
12) Thanksgiving Turkey & stuffing
13) Pumpkin Mousse
14) Cashews
15) Junior Mints
16) Frozen Strawberry Daquiris
17) Chicken marinated in Italian dressing, and cooked in strips
18) Fresh Fruit Salad
19) Lasagna
20) Butternut squash
21) Lucky Charms

O.k....so maybe I wasn't all that hungry - I had to reach for some of these!!!!


Two Posts Today!

O.k., for all of you who are "getting it down" for October, I think I deserve a pass for missing yesterday.

Paige and I spent the entire day in an itty bitty examining room, waiting for an OR to open up so she could have her hip put back into place. Because we were on-call for a cancellation, she didn't eat or drink for nearly 24 hours until we were finally taken into surgery at 5:30.

Her hip got much worse yesterday - the surgeon said her femur had slipped completely out of her hip socket and slipped nearly 3" up behind it. It was very obvious just from looking at it how bad it was.

He had a hard time putting it back into place, and once he did, he casted it, and it popped back out. So he had to take the cast off, put it back again, and re-cast it. She was in a lot of pain when she came out of surgery.

She has a spica cast, from just under her armpits, wrapping all around her body, and down to her knees, with just a small opening for her to use the bathroom. She is flat out on her back - she can't bend anything.

He was able to look at her hips with a tiny camera, and said that her muscles were just shredded on that hip - that it looked like strands of spaghetti. She will be casted for 2 to 3 weeks to allow these muscles to rest and recouperate.

After that, we will have to make decisions about more involved surgery to reconstruct her hips. He still is saying he is at a loss of how to fix her, only now, fixing her is our only option.

As you can imagine, getting her into the van to bring home was quite the feat. She had to sit on the edge of the seat, with the back of her neck resting against the seat. After she had sat there for a while, she was so uncomfortable that I actually stopped the van halfway home, and just laid her down flat in the back seat.

There's lots to figure out - and being a holiday weekend here, I won't get much of it settled this weekend. I need to find some way of propping her even just a little to feed her, as I can't feed her flat on her back because of her choking issues.

I can't even imagine how I will bathe her, and wash her hair. I need some sort of stroller to transport her, as I have nothing to take her to the van and to the hospital for appointments.

I've had to take a leave of absence from work, because I have to stay with her for the next 2 or 3 weeks...so, we'll take advantage of that time for just the two of us!

So, forgive me if I missed posting on Friday :)

Thursday, October 04, 2007

What A Long Day! Get It Down Day 4

Paige and I spent the whole day at CHEO today. And I mean the whole day. We left here at 8, arrived at the hospital around 9:45 and didn't see her orthopedic doctor until 2:30. Its always like that in that clinic. Too many kids with too many broken bones!

The news for Paige is not wonderful. Not only is her knee dislocated, her hip is as well. The dr. tried twice to put it back in, but it is just too painful for her. She has an insane level of pain tolerance, and she was obviously hurting. She had a bad night last night too. She wasn't able to settle in and sleep very well. No position was comfortable for her.

We weren't able to get very good x-rays because she couldn't extend her leg out at all.

So, tomorrow, we go back, where they will admit her, sedate her, and try to put everything back where it belongs. I imagine she may end up casted, as he said it needed to be stabilized and rested for a while afterward.

He is hopeful he can get some good x-rays while she is asleep and possibly an MRI. He said that he wouldn't have time to do any "major" surgery tomorrow, but he wouldn't be surprised if this latest incident has brought us to the point where it will be sooner or later.

I hope we haven't pushed the envelope too far - I want her to walk, but more than that, I want her pain free.

She's so good to take to the hospital, so easy to entertain, and so patient to wait. Such a little love.

We spent lots of time people watching. Five hours in a waiting room that had probably 100 people in it will do that to you!

I always look at people and think, "I wonder what his story is - I wonder what she is thinking about." Everybody has a story, and there are probably a good mix of wonderfully uplifting stories and horrible stories all sitting in the same room.

Paige had a little v-tech toy with her that spells out words, sings little song, etc. It's got lots of pages on it, and lots to keep her busy. About 10 feet from us was this tall, lanky 15-ish looking boy, who had pants 8 sizes too big, a hoodie with the hood pulled up, and ear buds cranking music out. Dakotah refers to kid's who dress like this as "gangsta"

He had a casted arm - probably a skateboarding accident or something like that. He was impatient and had a doting mother who tried to make conversation with him every few minutes. He would roll his eyes, take his ear buds out, grunt at her, and then go back to whatever gameboy type thing it was that he was playing.

After a while, his batteries died in his ipod. Well...he slumped even more, sighed, tapped, etc. And he kept giving Paige really dirty looks. He was staring at her toy as if to tell her to stop playing with it.

His mother said to him, "honey, do you want to move to the other side of the room?"

What she should have said to him was, "grow up - everyone here is tired of waiting - deal with it." And then she should have remarked how patient Paige was being, how well behaved she was acting.

He could have learned a lesson from her. All this from a child who is going on no sleep, and a very painful problem.

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

At one point, a woman probably in her late 40's came over to see her. I guess I've come to recognize the people who are happy to meet Paige. She started talking to her, asking Paige to show her the toy, etc. We chatted for a bit, and she told me she had two kids with Down syndrome, both almost 11. I was like, "Oh, wow, how neat! Are they twins?"

No...they are both adopted!! A boy and a girl, born just one day apart from one another. How cool is that??

~~~~~~~~~~~~~~
Like I said, I have started to be able to recognize people who "get it" and those who don't. We also met a don't today. She stared at us in a "what's wrong with that kid" kind of way. Eventually she started to talk to me.

She said, "Is she yours?" I didn't even really understand what she meant. When it clicked, I said, "Yes, she is my daughter." "Oh," she says, "I just wondered because sometimes you see people who take them out just to get them out for the day."

O.k. First of all, Paige goes out all the time, and goes wherever we go. And, she goes to school every day. And last of all, she is NOT a "them."

I take a deep breath, and say with lots of cheer in my voice, "Oh, Paige and I go all kinds of places together when she's not in school."

"She goes to school?" *sigh* yes, she goes to school.

Then she launches into this story that goes something like this, "My mother had this friend who had a daughter that never grew. The doctors told her mother she would die when she was born. Back then, they didn't do anything for them like they do now. But, she is the same age as me, and I'm 42, and she's still alive."

Not understanding how this story had anything to do with me, I just kind of said, "hmmm...wow."

But that didn't deter her. She persevered. She actually said to me, "Do you have any other kids?" I said, "Yes, Paige has an older sister." Then she says: "IS THERE ANYTHING WRONG WITH HER TOO?"

Excuse me, what??!?!

I said, "No, both of my children are pretty healthy." This time with a little irritation in my voice. And she continued! She said, "Its funny how it happens, you just never know, one kid can be fine and the other one can be like this." (pointing to Paige.)

Oh boy.

I said to her, "Paige can hear, I'd prefer it if you spoke to her instead of about her."

Finally, finally, she pulled back. I guess she figured a mom who has to deal with such problems as I do can be a little touchy.

She's right. I always get touchy around people who chose to be ignorant.

Wednesday, October 03, 2007

Dance!!

Today, in my next entry for "Get It Down," I'm going to celebrate the way Paige dances.

Her favorite dance is to set her music going, and then tip her head backward, with a big smile on her face and spin. Its the most fun right after her bath when her hair is still damp, and flowing freely down past her butt when she spins.

But, she's not too picky. She likes to dance just about anywhere. She's happy like that. Sometimes when she has no music, she'll hum a little tune. And sometimes she'll come up to me, wrap her around around my neck and just sway, understanding that language of love between mother and child than no one else can.

Paige has had a very difficult time with her legs this week. She has only been to school one day...the only day out of the last five that she could put any weight on her legs at all. Her knee is obviously dislocated, and she is in pain. We have an appointment with an orthopedic specialist in the morning.

Still, she is happy, sweet and affectionate.

So, today when you are celebrating someone or something about Down syndrome, do a little dance for Paige.

Tuesday, October 02, 2007

Unexpected Joys of Down syndrome

Today's idea for "31 in 21" comes from Jennifer at Pinwheels. Jennifer posts about the Unexpected joys of Down syndrome.

Its hard for me to narrow down the joys that having a child with Down syndrome has brought to me. To be honest, my entire world is more joyful because of Paige. And I think that extra 21st has made it more poignant, deeper, and sometimes more intense.

I have met incredible people as I have walked this path with my amazing little girl. I have learned life lessons that no one could have taught me in any other way. I have seen her sister blossom into a stunning young woman, full of great compassion.

All of these things have been unexpected - and joyful.

But, if I could pass one unexpected joy onto a new family just beginning this journey, I think I would pass on this...

When you receive a diagnosis of Trisomy 21, whether prenatally or shortly after birth, you learn that your child will take longer to achieve certain milestones. Many people say it is a mourning process that takes place as you realize your child may be late to walk or talk, or read or write, or gain independence.

You are immediately launched into a world of predictions when the reality is, there are no predictors for this new baby, any more than there are for any other babies.

So, you begin. You read and research and talk to other people. You learn the new language. You sign up for therapies and intervention.

And you start to realize that it will be o.k. Its o.k. to take it a bit slower and to meander through the milestones instead of racing through them.

That has been one of the best unexpected joys for me. Dakotah raced through milestones so fast that I missed many of them. She potty trained herself at 18 months. We have a video of her first birthday where she was speaking a full sentence "Oh, wow - I like it!"

And she hasn't slowed down since. She was reading before she went to school. And before I could blink, she is 6" taller than me, has a much better figure than I do, and is getting straight A's in subjects that I have not even thought about in nearly 30 years.

It has been so joyous to see Paige move through those milestones a bit slower. She smiled very early, earlier than Dakotah did. But, she took her time learning to walk. She lives in the moment every day. She is never in a hurry, and never hesitates to stop and look when something catches her eye.

I can clearly and vividly remember great milestones of hers - the first time she fed herself, those first steps, even with the aide of a walker, the first time she played itsy bitsy spider, the very moment she realized that her hands could tell me what she wanted, the first time she toddled down the hall to my bed, and crawled in beside me all by herself...

So many firsts, so bright and clear in my mind...and so many more to come.

Unexpectedly Joyful - this stroll we are taking through life.

Monday, October 01, 2007

31 for 21!



October is Down Syndrome Awareness Month! In celebration, I've accepted the Challenge of blogging every day for all 31 days of October. Click on the above link for more details.

If you're a blogger, consider this celebration with me! You can blog about anything - but my special request is that at least one post a week be about something uplifting - the celebration of life, no matter how many chromosomes you have!

I'm also going to add a twist to my own personal challenge, and try to send something with Paige to school every day that reminds her teachers to celebrate this sweet kid of mine - a story about someone with Down syndrome, a little known fact, etc.

If you have someone special in your life with Down syndrome (and I know you do, because you are reading this blog!), take the time to talk about what you've learned, how your life has been touched by Down syndrome, or just stop and offer up a hug to Paige the next time you see her.

Won't you join me in a blogging blitz? And won't someone, PLEASE tell me how I can add this button to the side of my blog and have it clickable??? Geez...

My Sweet Daisy

If Paige were a flower, I'm sure she'd look just like this. A daisy with pizazz. Strong and beautiful, reaching for the sunshine, weathering a little rain along the way. Breathtaking in her perfection, yet vulnerable to the elements.

This weekend, Paige dislocated her knee. At first, I thought she had popped her hip out of place. That happens several times a day, but once in a while, it doesn't go back in on its own, and we need to massage and manipulate it back for her.

After spending 6 hours in the waiting room at the ER (grrr), I began to figure out that it was actually her knee. Badly arthritic, we suspected she was having a flare up. But it happened too suddenly, and too completely.

She wasn't able to walk - at all.

I thought of Dave, who often talks about true accessibility on his blog. Our hospital has a brand new wing, supposedly the most modern it can be. Yet, when I arrived, I parked in the handicapped spot (yes, with a placard), and took Paige's stroller out - a stroller that clearly says "positioning wheelchair" on it. I had to lift her out of the van by myself - no small feat for me, as she is long and gangly and I'm short!

Then...in order to actually get to the emergency room entrance, we were faced with a dilemma - there was a big sidewalk ahead of us! I was able to tip the chair back, lift her onto the sidewalk, and then tip it again to take her over the other side.

But, what would Dave have done? He could not have wheeled over it - he would have had to take a very scenic route on the way in. Not a big deal this weekend, as its a beautiful fall weekend. But a MAJOR deal in two months, when there could have been a foot of snow here in Ontario.

And the "handicapped" bathroom at the hospital? Probably enough room for a wheelchair to wheel in. But certainly not enough room for a wheelchair, its rider, and a helper to all be in the room at the same time. Probably perfectly fine for someone who can stand up, and pull their pants down, and maneuver to the toilet. But what about people who's legs don't work at all? There was no place for me to lay Paige down to get her pants down - no place to support her while I tried to pull them down so she could go. How does one take their pants down without standing up???

I spent the better part of 24 hours in and out of the hospital. The "triage" room had three small examination beds - room for a patient to lie down, but no room to wheel a chair in. Each time I went in one with Paige, I had to back her in, and then leave the room (via a curtain) and come back into it.

How frustrating.

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I'm out of practice with Paige. She's had a very healthy medical run in the last year or so. While her loose joints and her popping hips have lured in the background as something we will need to address, we live a pretty carefree life. We're not big on dwelling on stuff.

But, I was reminded of her frailty this weekend. Of how delicate she really is. And I've been melancholy and sentimental all weekend for it. I love this child so much. I would die for her in an instant. My soul is so deeply tied to her, and her sister, that I'm not really sure where I end and they begin.

We dealt with Paige's mortality before we were blessed with her life. We have nearly lost her a few times. And through it all, I've had to think about that possibility. To ponder the concept that her time with us could be limited.

She has given me so much joy, and I have always, always believed that I would be able to take that joy and share it with the world, no matter what. That, if she were ever taken from me, I would survive knowing that I had her message to carry on.

I've thought about those things this weekend for the first time in a very long time.

We're staying home together today. Just Paige and Mom. And we're going to hug. A lot. We're not going to think about anything other than sheer adoration for one another.

Because when it comes down to it, all of the "stuff" that makes up our collective lives is pretty unimportant.

Everybody needs to be spoiled once in a while.

Paige is due for a day of it.

Sunday, September 30, 2007

Check out our Etsy Store

The temptation to do "Betsy's Etsys" was great, but my sister and I are doing this together, so we played on our maiden name. We've got very little listed, but we've got lots made and ready to go on!

Sunday, September 23, 2007

Absolute Love

For anyone who ever thinks, even for a moment, that no one can love your child as much as you do, click here. I think God's most amazing gifts are born on the 21st chromosome.

Yep, Its My Birthday!


Today I am One!!! We celebrated my birthday with my girlfriend, Millie, at the baseball fields yesterday. We ran and ran and ran! I got a really fun pull-toy, some treats, and new doggie toothpaste - yummmm!

Aren't I adorable?!?

Saturday, September 22, 2007

What a Busy Week I've Had!

I really believe that we have to take life in bits and pieces. I have a very hyper personality, and its very hard for me not to make lists - lists of things to do, lists of things I don't want to do, list of things I don't want to forget, etc.

Its very overwhelming - I know we lead a much busier and crazy life than my parents did when they were raising kids.

I get very easily frustrated by the meaningless stuff that takes up so much of my life...the mundane chores that come with motherhood, and the things that, no matter how many times you do them, they still come back at you - laundry, cleaning, etc.

Today, I did something I rarely ever do. I handed a project that I had planned to do for a very, very special little girl back to her Mom, telling her I was so sorry, I had just bitten off more than I could chew. It was so precious to me that I couldn't do a "good enough" job at it - it had to be precise and perfect, and I just could not find the time to do it.

I feel beyond horrible about it.

My sister and I have opened a store at Etsy.com called "Bean Stocks." Our maiden name is Bean, and we thought the play on the word Stalks (for card stock, etc) was cute. We haven't gotten it set up yet, but we are both very creative (my sister has been instrumental in opening a very successful art gallery, and has won many awards for her New England nature photography). It will have lots of homemade cards on it, and some other crafts as well.

I'm tossing around another idea about teaching some classes as well, that I will post about another time.

This week, Paige had school pictures taken. We know the photographer personally, and he is so sweet. He took a ton of pictures of Paige, all with smiles and laughs, but the vast majority of them had her hands in the picture as well. He was so bummed that he told Paige's aide he was coming back the next day to try again. So, more than 50 pictures later, I'm told I will LOVE the one he got when it comes back. We'll see!!

I didn't have the heart to tell him that I adore Paige's hands, and would actually prefer they be in the photograph - they are very precise to me, and it wouldn't be Paige without them there!

I totally sympathize with him - I've spent many hours in Sears, breaking a full sweat as I tried to get two kids to look at the camera at the same time, to smile, to sit up straight, to put your dress down, etc.

Two weeks ago, Wayne brought me home a laptop of my very own, and said, "There, now get that book written." I've spent many hours doing just that! I'm well on my way, and am very surprised at the emotional toll its taking on me to relive some of the more difficult moments of my life over again.

I suspect it will be one of those books that start of being about one thing and end up being about quite another.

And today, we had a birthday party for Kirby!!! Check back in the morning for pictures and a complete story!

Wednesday, September 19, 2007

My sister, my friend

As much as I hate the idea of moving Laura and Pat any further down on my blog, the writer in me is just too much to squelch. To say that Laura made my week is an understatement!

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Dakotah came bounding through the door after school yesterday, already talking before she even got in the house, as she is everyday.

Someone on her bus had a copy of the 2007 Guinness Book of World Records. She blurts out, "The oldest person to ever live with Down syndrome was 64!!!" She is nearly in tears - saying that's too young to die, that she doesn't want Paige to die that early, etc.

I know that this statistic is wrong, as there is a gentleman at our local Community Living group who is in his mid-70's with Down syndrome. He has been quite healthy until just the last month or two.

I try to explain to her that each decade, the average life span for a person with T21 gets greater...in the 50's the average age was just 9 or 10 years old...ten years later, it was 20-30, when Paige was born, I was told 40-50. Now, I think that it is expected that generally people with T21 who have good health care are reaching about the same life span as everyone else.

Its strange how this would have caught her so off guard. Just the thought of Paige's mortality in 50 years takes her breath away.

It reminds me of an ER episode where an old lady is dying and her daughter with T21 is also very ill. The old woman does not want to take aggressive measures to save her daughter's life, as there was no one to care for her after she had died.

I remember attending a conference once where there was much conversation about care for a person with T21 as his or her parents aged. One gentleman that was sitting beside me told me this story that has always stuck with me.

He told me that as he was growing up, his parents were always very, very conscious of making sure he didn't feel burdened by having a brother with T21. They never expected anything extra from him, and made arrangements for his brother's care after their death.

He had gone on to marry and have two kids of his own. His parents had died perhaps 7 or 8 years prior to this conference.

After their deaths, he not only took his brother into his home, he brought two of his brother's friends with T21 to live with him as well.

He said, "You know, my parents always worried about my brother being a burden to me. What they never thought about is that I WANT him with me - I want to have breakfast with him every morning, and drive him into work, and play ball with him, and talk about hockey with him."

He had created a wonderful family that included a wife, two very young daughters, and three grown men with T21. And he wouldn't have had it any other way.

In our family, we make no apologies for Paige having T21. Nor do we apologize for any health issues she has had. I have never felt guilty when one of my children needed more attention than the other, as I want them both to know that I love them dearly, and our family will always do whatever we can to meet the needs of one another.

I am amazed at the love my children have for each other. Both of them are very affectionate toward the other, both of them adore one another. Paige is as in tune with Dakotah's needs as Dakotah is with Paige's.

Last night, they had a blast in the bathroom because Paige kept turning the light off on Dakotah, and Dakotah would pretend to grumble about it, which would send Paige into a fit of the giggles.

Just two sisters, no chromosome scoreboard needed.

That's what family is all about.