What a lovely night

My friend, Camille's, daughter had her Confirmation on Monday night. I don't know if you can tell, but if you look closely at her left hand, she has her fingers crossed - she is either making a wish, or telling a lie, rofl.

I was so honoured and happy to be her sponsor. It was such a magical night - Emma was so sweet, and so adorable, and so affectionate all night long. Every time she looked at me, my heart melted.

As I said to Camille, it was as if the Bishop were tying our heart strings together as he Confirmed her. I felt so bonded to her, and tied to her soul in an incredible way. Every few minutes, she would just gently pat my hand, or kiss me so softly. We were both just adoring one another.

I know we all go through times early on when we feel like everyone is looking at our children because they have Down syndrome. We worry that people are staring at us or making judgments about us.

That feeling eventually goes away, and I can't even remember the last time I worried, or even thought about anyone noticing Paige had T21.

But Monday night, well....I really felt like all eyes were on us. There were probably 50 children with parents and sponsors at the Cathedral, and I felt like every single parent and sponsor was looking at Emma and me - with envy and jealousy that *I* got the privilege of standing beside her, putting my hand on her shoulder, and praying for her. I felt like every set of eyes in the room was looking at us, wishing they could be us, as we snuggled and hugged through the service.

My heart nearly burst when Emma was standing on the kneeler in front of me, and reached around and took my hand to put it on the pew in front of her, so I was protecting her on both sides, and then, as if it weren't just right, she took both my hands and wrapped them around her waist. I could have fainted from pure joy at that moment.

As I whispered to her over and over again at the end of the ceremony "Thank God for you, Em, thank God for you."

Baby Michael

Today, Paige had a dentist appointment at CHEO. The clinics at CHEO are lined up and down a long corridor on one wing of the hospital. There aren't too many of those clinics that we haven't visited at one time or another - audiology, neurology, opthamology, general surgery, etc.

The dentist's office shares the same waiting room as the neurology department. While we were waiting for Paige to go in and have her teeth cleaned, we were people watching as we often do. Paige love, love, loves to people watch, and is content to sit and do it for a very long time. She loves being in a mall where she can see many people come and go.

For me, I am a dreamer, I guess, and I believe that everyone has a story to tell. When I people watch with Paige, I try to imagine the story that I would be told if I were brave enough to ask - imagine the beautiful, maybe heart-wrenching stories I could learn from an old lady out buying lottery tickets, or a little girl happily buying her first pair of school shoes.

So, it was with this kind of absent minded dreaminess that Paige and I saw baby Michael. Now, I have no idea if that was his name, but I think he kind of looked like a Michael. He was about 3 or 4 months old, dressed in a navy blue and tan plaid shirt with little khaki pants on and a sprig of white blonde hair on the top of his head.

Baby Michael and his parents were coming out of the neurology department, and both mom and dad were visibly upset. Dad was nearly gasping for air, as tears streamed down his face, and he struggled to hold it together. He was clinging to his son for dear life. Mom was red-faced, and tear stained, with that deer-in-the-headlights look that is never good.

They were escorted across the hall, to the surgery clinic. Once they were left alone for a minute, Mom folded into Dad's arms and they rocked back and forth and just hung on to one another, rubbing baby Michael's back as they did.

Within a minute, they were again whisked away into an office.

I so wanted to shoot them magic words bubbles - and I'm not even sure what those words would be. All in a moment's time, I wanted to tell them that it was o.k., that they were in good hands, that they were strong, that the love they had for their baby would make them nearly limitless in what they could endure for him. Maybe I wanted to say, "I know, I know" or "I understand."

But, of course, I don't know much of anything, other than they had just received devastating news of some sort.

I pray that the desperation that I witnessed was fear - fear before acceptance of something that could perhaps be fixed, something that would allow them to love and cherish their dear boy for years and years to come.

I pray that the days ahead for them are good ones, that the life lessons that are about to be thrust upon whether they asked for them or not, are good ones.

Most of all, we prayed for baby Michael tonight...a sweet little boy who's story or name we will never really know.

But, I'm sure when Paige and I said our prayers, Our Good Lord knew exactly who we meant.

Why do I do the things I do?

After bragging last week that I haven't had a cold in five years - what happens?? Yep - I get a cold - a bad one - one worthy of an every five years experience. *cough, cough, sniff* (oh, don't forget *cough, cough, cough, cough, leak pee*)

More Easter fun...

Here is my latest attempt at home-made Easter eggs - truffle-like and filled with chocolate, vanilla, nuts or coconut inspired by Bakerella - yummy, but a little goes a long way - we still have too many left!

These are still in the rough stages, still drying, so there's lots of drippy's on the edges.

Thanks to Dakotah and my friend Julie for their groovy decorating skills!

Easter Evening

Dakotah's favorite thing to do...take pictures! Notice the little line of chocolate on Paige's bottom lip. It was Dakotah's way of convincing her to "model" for her. By the grin on Paige's face, it looks like she thought she was the one doing all the convincing!

Be Inspired, Be Humbled...

If your face needs to smile so wide it makes your cheeks hurt,
If your heart needs to swell so much it feels like it will burst,
If your soul needs a hug so warm and tight you never want to let go,
If you want a feel good moment that will carry you through the day,

Then take just seven minutes to watch this video - you'll be so glad you did!

Susan Boyle

What beauty we might miss...

Indeed!!!

Today's The Day

Make it YOUR day to drop this word from your vocabulary.

A Few Pictures From Paige's Birthday

Paige turned 12 last Monday! We made the mistake of opening gifts first and then going to the cake - Paige isn't much of a cake eater and was rather unimpressed with my decorating skills, lol.

A great new blog!

My friend Julie, just started a fantastic new blog called Recipe Adjustment.

If you like to cook, like to eat, like to read about cooking or eating, need a recommendation on a product or an ingredient, then you MUST bookmark this blog and visit frequently.

Julie is the consummate cook - she spends hours devouring recipe books, and then tweaking the things she reads into delicious one of a kind food. She is also a great researcher, so if you are trying to decide which mixer is the right one for you, she's the girl to go to. She can find you the best, at the cheapest cost!

I can't wait to see where Julie takes her blog - I'm excited to see decadent recipes, and consumer information about food warnings, specialty recipes like low sodium meals, or how to prepare a whole week's worth of meals on a shoestring budget in just one afternoon.

Make this blog one of your dailies - you won't be sorry!

Dear Dad,

March 22nd marked the 11th anniversary of your death. Its hard to believe that we said goodbye to you 11 years ago.

I miss you terribly, and long for the sound of your voice. I still have that same dream I've had since you died - the one where you are sitting in the corner chair of my dining room, while I am entertaining guests. Only I can see and hear you and you are telling funny stories and commenting about the people around the table and the things they are talking about, making me laugh right along with you.

Its a strange dream, and its funny that it keeps happening, almost identical every time I have it. I've begun to look forward to the dream, and am always happy when I wake up to remember it. I can see your crystal blue eyes so clearly in the dream, and can hear your voice as if you are sitting next to me.

Its a strange combination of emotions - this missing you so badly, literally aching for my dad to be alive again, and then feeling so happy and so blessed to have had such a great father who left us too young, but with amazing memories of an incredible man.

I imagine for anyone who truly loves their children, there is no greater honor than to die knowing your children adored you, to know you were a good parent, and that you made a huge difference in the lives of the people you created.

Please know that you excelled in all of these areas, Dad. I have adored you forever, and will continue to adore you forevermore. You guided me and shaped me into the person I am, and I am forever thankful to you for that.

As much as I miss you, it was your soul that made you an amazing father, not your physical body. And I feel just as close to your soul as I ever did. That makes the missing you part just a little bit easier.

I'm hoping you've saved a seat for me in Heaven, because the minute I get there, I'm going to be jumping from cloud to cloud, looking for the man with the gentle voice, the white hair, and the amazing eyes - and I'm going to sit right down beside him, and tell him that I love him.

And then, Dad, you are never going to leave my sight again.

Love you with all my heart,

Betsy

As the kids' today say, it was a par-tay

Last week was March break for my kids. After much deliberations, and many negotiations, Dakotah finally talked me into allowing her to have a party at our house on Saturday night.

For any of you who haven't experienced 15 and 16 year olds yet, let me just tell you that the crazy 8-year-old parties you've witnessed are nothing. Those you can organize, and at least somewhat guide the children through the chaos. The cool things are balloons and treat bags and messy cake and ice cream.

When you're a teenager, the word party takes on a whole new element. Dakotah thought that perhaps 20-25 people would be the appropriate number of guests. I kindly suggested 8-10. We settled on 14. I might not have bargained quite enough on that one.

So, set up with a whole list of household chores to d0 (hey, I had to get some benefit from it!), Dakotah cleaned and organized, and did everything I asked of her last week. Which was actually pretty darn nice.

And when the honored guests began to arrive, I did what I promised - I slinked myself, my husband, and our youngest daughter up the stairs so that the guys and girls could do their thing.

I wish I had my computer upstairs at the time, because I had so many thoughts about this little get together...

Its strange being on the "grown up" side of things. Listening to the kids talk and laugh and just be goofy reminded me of my teen years, and they truly don't seem like as many years ago as they really are. It seems strange that I was the supervisor, the one "in charge" - when I so vividly remember being a kid just like them.

I have always believed that one of the keys to successful parenting is to know your children's friends. As much as a pain as it is to have kids hanging around your house all the time, I think it is well worth the investment in time (and groceries!) to have them be familiar with your home, and for you to be familiar with them.

I want to know what the kids Dakotah hangs out with are like, and I want them to know what to expect from me...where I am willing to compromise, and where I am absolutely not willing to compromise.

Dakotah did a really good job as hostess; she turned music and voices down when they got too loud, she stopped the sillies when kids were being crazy, and she checked in with me often. She even tolerated me coming and going every hour or so, just to kind of make my presence known.

I have to say, I think she really does have a pretty good group of kids she hangs out with. Even though the language sometimes left a bit to be desired when I wasn't downstairs, they were polite and respectful when I was. Some of the bits and pieces of conversation that drifted upstairs was a bit interesting at time, but nothing particularly shocking.

I was a bit surprised at the "couples" that seemed to be there - but these are kids in their mid-teens, and its a rite of passage to have a boyfriend or a girlfriend; its the time to begin to learn some of the intricacies of relationships, and to learn about who you really are. I felt kind of old and like my own mother when I wanted to sit between them on the couch. ;)

I haven't experienced the boyfriend thing with Dakotah quite yet, so getting a little taste of it was just another notch on the belt of this motherhood thing.

Right now, she is a social butterfly, who travels in a big pack of kids. Every weekend there is a party, or a movie night or something going on. I spend gads of time taxiing her here, there and everywhere. Most weekends, I don't see 5 minutes for myself, and there are times when I just want to scream "enough already."

I really do want her to love her high school years, to have fond memories of it, and to make good friends that she may carry with her for a long time. I want to have a good relationship with her, where she feels that she can talk to me about anything. I'm not seeking her friendship, but her trust in me as her mom, which sometimes takes on the role of disciplinarian and advisor, and yes, sometimes even dictator.

I don't know that I will agree to parties at our house too often - I was just too nervous, feeling a bit too out of control, and fretting a little more than I probably should have. It was just too many bodies to be responsible for.

But, we all lived through it, and everyone seemed to have a good time.

Every day these two girls of mine bring me new experiences, and new things to ponder. I wonder what our next adventure will be!

World Down Syndrome Day

Although I'm two days late posting for World Down Syndrome Day, I didn't not want the day to slip by without comment from me.

I'm so happy that people from all over the world celebrate Down syndrome on March 21st. Its a wonderful feeling to share that kinsmanship with people I will never know, and with many, many people I have gotten to know simply because one tiny little extra chromosome happened in our lives some years ago.

Before I had Paige, and admittedly, perhaps even for a while after I had her, I never understood when parents who had children with disabilities would say they wouldn't change a thing about their child.

Surely, that must not be true. O.k., its easy to say that you love your child just as they are, but wouldn't you really want them not to have Down syndrome, or any of the other number of things that a tiny genetic blip could make happen in a body?

Just last week, when I was discussing genetics with my sister, she said, "well, of course, if there were some magic pill you could give her that would make her walk and talk and...."

Hmmmm....I began to think. What if there were a magic pill? Would I be rushing to get a prescription written? Excited to give it to Paige right away?

To be honest, if there were a magic pill that would have taken away the medical issues she has had - esophageal atresia, gall bladder problems, reflux, orthopedic problems, the list goes on and on and on...I may just sign up for it.

Because its never easy to see her hurting, to face another surgery, or another health set back. Its ingrained in my body as a mother to want her to be healthy.

But being "healthy" has very little to do with her developmental delays, or her extra chromosome.

I really have no interest in THAT magic pill. I truly do understand now what it means to love your just child as she is. I love every single part of her - her silly giggle, her sweet hugs, her goofy little ears, her starfish hands, her brushfield spots, her long skinny legs...

I love the good stuff and the rough stuff. I love how she has this intricate way of communicating with me that involves very few words. I love strolling through milestones, and jumping up and down with excitement at goals that have taken forever for her to meet, when I might otherwise have missed them completely had she raced through them.

I love the journey - the people we meet along the way - the experiences we have - the way the world looks a little more beautiful seeing it again from her eyes.

I love this little soulmate that God has given to me, keeping her just a tiny bit closer to me, tied to my heartstrings with a tiny little extra chromosome, that will allow me a few more years to claim her as mine, all mine.

I love the wings she will sprout, that will slowly let her fly away from me, and the beautiful eyelashes that will look back at me and flutter, and make my heart soar.

I love every single thing about her, and no, I would not change a thing. Not a single thing.

Dear President Obama

May last week's "slip of the tongue" be a good lesson for you. Words matter. They can cause great joy, and great hurt. They can stop and start wars. It is never acceptable to laugh at or poke fun at a group of people the way you did.

Perhaps most bothersome is that what you said really was a slip of the tongue - something you said that you immediately realized was wrong, and needed to be taken back. Because that tells me that perhaps in the confines of your own space, when the lights are down, and you are just "you" and not the President of the United States, that you do make these kinds of jokes. People don't slip and say words that aren't part of their everyday language.

Certainly, you understand that your conduct must be beyond reproach. That "I didn't really mean it" isn't an acceptable answer.

A great many people in your country have embraced you as the President primarily for your stance on disabilities. In assuming this position, you have accepted the responsibility of setting a good example for the people of our country. Your words, as well as your actions, will be scrutinized.

I'm sure this is one mistake you won't soon forget. I think that's a good thing.

Spread The Word, To Stop The Word

As John says, there is no nice way to use the word "retard." If you are using this word without thinking about it, consider some of the other words that you would never, ever call someone, and add this word to the list.

Please. Please consider how hurtful it is, how deeply ingrained the indignity is when someone utters it in a mocking tone.

If you know me personally, please do it for Paige. If you are visiting this blog because you have a family member with a developmental delay, please spread the word to your family and friends.

There is no shame in having a developmental delay or a disability of any kind. Trust me, some of the greatest human beings you will ever meet are ones that you may have just walked right by without even noticing or acknowledging. Do them and yourself a favor and see others as fully living and loving human beings, no matter what the differences.

Please stop using the R word - replace it with respect.

Loving Dave Hingsburger!

There is a hole in this world that I fit into. It's an odd shaped hole. But its mine.

- Dave from Chewing The Fat.

As I said to Dave on his blog, I love the idea of creating my own hole in the world - rough around the edges in some spots, smooth in others, and then just kinda funky and groovy in others.

What Dave says is so true - each of us creates a little hole in this world through our words and actions, through our sense of humor, or our grumpiness, or our ability to love, or our desire to express an opinion or any other of innumerable ways.

I write often about Paige and sometimes about her differences - but her differences are really no more grand or more pronounced than anyone else's. Maybe they are a bit more visible to the general population, but in all of our striving to fit in, to be like others, I believe we all carry an innate desire to be distinct and memorable too.

Sort of like a carbon footprint, only maybe a little nicer, the hole in the world we create is up to us. Some of us will choose a nice, neat little hole, with smooth edges and not much definition. Others will leave a giant blast that says "I was here!" in enormous, eye-capturing ways.

I think our hole will be in the eye of the be"hole"der - as I can imagine that I would describe Dave's hole in the world to look differently than Joe would describe it.

Over the past few days, I've contemplated the people I know and what their holes would look like - a big variety of shapes and sizes, and edges to be sure. Yet, everyone has created something to be remembered - something distinctly theirs.

Perhaps this thought of Dave's - that we all have a hole in the world that is ours, is a great equalizer. I imagine none of the holes will say "this person's IQ was..." or "he stuttered" or "she had seizures."

Instead, just like I said to Dave, we'll see some smooth spots, and some rough spots, and probably something funky and groovy too.

Certainly, there are people like Dave who's little hole in the world will never be forgotten. And the rest of us will never be quite the same for seeing it.

Said by Dakotah...

when I asked her if I could post these two pictures on my blog.

Dakotah: I hate when you post pictures of me on your blog, then everyone can see them.
Me: But you posted them on Facebook, and you have like 500 friends that can see them.
Dakotah: Yeah, but your friends are old.

So, my dear old friends, here's my smarmy daughter :)

Why do birds sing from up above?

So, we were all at the mall yesterday, shopping and basically wandering around. We stopped at the food court to have lunch, and we were sitting there eating - Wayne, myself, Dakotah, and Paige, in her wheelchair.

Paige was pushed up to the side of the table with her back to the restaurant part of the food court. She was dressed for Valentine's day - with her big puffy white jacket on that has big pink and teal and blue and green and yellow hearts on it. Her hair was down, and she looked cute as a button, if I do say so myself.

As we are eating, this young man about 15 or 16 wheels by us in his electric wheelchair. He is very blonde, with striking blue eyes. He goes by us, and tries to get a glimpse of Paige - definitely trying to check out the girl who uses the same means of transportation that he does.

Because of the way she was facing, he couldn't get a good look at her. So he came back by. And then he went by again. And again. Finally, he parked himself half way across the food court facing us.

We were all like "omg, he is TOTALLY checking her out."

It was so funny, most especially because Dakotah was also with us. And if any of you have ever had a 16 year old daughter, you know the preparation involved in going to the mall - the contemplation of what clothes to wear, how to fix your hair, putting on makeup, selecting the right shoes - the list goes on and on.

No one seemed to notice Dakotah - but that boy sure seemed to want to get a good look at Miss Paige.

That's the 2nd boy in a month that has been sweet on Paige.

Look out, Dakotah, your little sister is gonna be competition in a few years :)

Happy Valentine's Day!

Isn't it funny how the smallest events are the ones that create the sweetest memories?

We were just remembering some of our favorite Valentine's moments. There are, of course, those traditional memories, when Wayne and I were young, and he was trying to woo me - and would send dozens of roses to me leading up to Valentine's Day, with some really neat gift arriving on the day itself. Or the hours I spent madly in love with him 250 miles away, scouring the Hallmark stores for just the right card - and not, being able to decide on one, would send off many to him.

We were laughing because of all the sentimental ones we sent to one another, the only one we can actually remember the words to was one I sent to him that went like this: (sorry, adult content, lol)

Outside of the card: "Know what I like most about being your sex kitten?"
Inside of the card: "Playing with your squeak toy."

*giggle*

ANYWAY!!!

My dad was always romantic to my mom on Valentine's Day, and would always bring her yellow roses, her favorite, for that day. But, the last year he was alive, just a month before he died, he wasn't able to do much for her, but she brought him a little stuffed raccoon that was dressed in a sweater with hearts on it, and a little red mask, along with some candy.

The last day we saw him alive, Paige (not quite a year old) was laying on his bed with him, cooing at him, and just being near - and he showed her the raccoon. She was playing with it, and I heard him say to her, "why don't you take care of this for me."

She still has it, and needless to say, it is very, very precious to us.

When Dakotah was in Jr. Kindergarten, just barely 4 years old, she spent almost an entire week copying the names of her friends onto Valentine's Day cards, and signing them all. I remember she couldn't fit her whole name on one line, and she tucked the letters of her name anywhere she could fit them - too cute!

And one year, her and I spent hours and hours and hours cutting dozens of hearts out of pink and red felt, and then tying them with ribbons to her pants and shirt, and putting them in her hair for "heart day" at school - the class that wore the most hearts got a pizza day. I'm pretty sure she was instrumental in helping her class be the winning class.

On Paige's first Valentine's Day in school, she was in what we called the "black period" - her favorite color was black, and everything she colored was black!!! Our whole house was decorated for Valentine's Day in BLACK hearts - taped on cupboard doors, the refrigerator, every surface we could find. She sure colored a lot of hearts that year, lol.

Way to go goth, Paige. heh.

So...keep it simple today. Make a memory for your loved one. Write "I choo choo choose you" in lipstick on the bathroom mirror. Tuck a red paper heart in someone's pocket. Lift your little one's shirt up and cover his or her belly in kisses (note, this also works with husbands, lol). Trace a heart in the frost (or dirt) on your car's back window.

Be goofy and sentimental!

Happy Valentine's Day!!!

Looking up!

I'm so happy that Paige is feeling better. Perhaps she will try school for a bit tomorrow, although she will most likely wait until Monday to go back.

Its not always easy being the navigator of this ship that sometimes takes us through rough waters. Especially with Paige's very limited verbal skills, I don't often know when she is feeling sick. She has an incredibly high level of pain tolerance, and does not indicate to me that she is not well until she is really not well.

I think I, and probably every mother of a child who is medically fragile, find myself in a constant battle with my instincts. Am I overreacting? Am I taking her symptoms too seriously? Am I worried about her having something really bad when its probably just a cold or a stomach bug?

Or conversely, am I trying to brush it off, hoping she will perk up in a day or two, and we can avoid a long wait at urgent care, or another needle prick, or yet another unpleasant procedure performed on my child who is already feeling miserable.

I don't want to be an alarmist. But I do find myself googling symptoms when she is sick. Could this be "it?" The inevitable shoe dropping that silently hides in the back of my mind - a constant reminder of just how incredibly lucky we are to have this little girl in our lives, how lucky we are that she has received such great medical care, and that she is working hard to thrive.

And...I don't want to be the mother that the doctor looks at in disbelief, that I didn't recognize how sick she was, that I hadn't been in a week before, trying to help her get better.

On top of that, is that maternal ache that every mother feels when her child is sick. I would take 10 times the sickness, 10 times the level of pain, in order to spare her a single moment of it. I fret and wonder, how long has she been feeling unwell? With her cast coming off, we expected some discomfort, and indeed, she has been grumpy and moody for a month now, something very uncharacteristic of Paige. Has she been sick this whole time?

When Paige was younger, I was actually more overprotective of Dakotah, because I always had this sinking feeling that I was going to be so in tune to Paige's medical needs, so on top of them, that I would miss something big in Dakotah, and she would become the child who's life we were begging God to save.

I tell Dakotah all the time that I'm learning to parent her just as she is learning to grow and become independent - that there is no manual, and that we must do the best we can do at this job called life. Each day brings new lessons, new worries, and new joys, and thankfully, most days the joys are so great that the worries and necessary lessons become just a small part of who we are.

I thank God that He has bestowed me with the gifts of my children - constant reminders to never take anything for granted, and to fall to my knees daily and thank Him for the splendor of what He has given me.