Thanks, Randy Pausch

Randy Pausch
Achieving Your Childhood Dreams

Rest in peace, Randy...you did it with great dignity, a sense of humour, and with an amazing message to the world.

My prayers go out to your family. They will be o.k. - you taught them how to love with their whole hearts, and that will carry them for many years until you meet again.

You seemed like a great guy - I think I would have enjoyed knowing you.

If anyone hasn't seen his "last" lecture, its worth taking the time to see it...

"She's Always Going To Need You"

I met a wonderful doctor this past week.

His name was Dr. Doyle, and he runs the clinic for children with autism at CHEO. He is a developmental specialist, and the last doctor on our list of doctors to see to determine if Paige has autism.

Dr. Doyle is an older gentleman, soft-spoken, genuine, and so very sweet. The wing of the hospital that we met at is called the Children's Treatment Center -where children with physical and developmental delays go to receive therapies, evaluations, fittings for seating, diagnosis, etc.

There is an on-site school at OCTC - for kids up to grade three. Although many people strongly disagree with "special" schools, this school is special for all the right reasons. It was designed for children who are quite severely delayed; the classrooms are small in number, but big in size to allow for wheelchairs and adaptive equipment. The teachers and aides that work with the children are trained to meet their needs within the classroom. Doctors are available at all times, and often the children with greater medical needs see their doctors right in their classroom.

Each room has one-way mirrors so parents can stop by at any time of the day to see what their kids are doing. This is my 3rd or 4th visit to OCTC, and each time I visit, there are always parents there. Although, its sometimes hard to tell who is who, because there is such a great sense of family between parents and educators that they are on a first name basis, sometimes chatting about the previous weekend's adventures and such.

So, needless to say, I felt at home the moment we wheeled our way into the waiting area.

I was greeted by Dr. Doyle, not a nurse who took us to a waiting room, but by the doctor himself, who led us to a friendly room with toys and puzzles, and only a discreet bit of "doctor" stuff around.

I was prepared for the typical developmental checklist to be read to me - to answer all of the 500+ questions that I have answered before, with the vast majority of them being answered with a 'no, she doesn't do that" or "no, not yet" or something of that nature.

Instead, I was led into a conversation about Paige herself. A conversation in which I was able to tell funny stories about my little girl; in which I could brag about all the things she can do, and talk about the areas where she isn't progressing quickly.

He was genuinely interested in her as a person, giving me scenarios and asking me how I thought she would react in those scenarios.

After an hour or more, he told me all the things I already knew - that she was developmentally delayed past the point of what was typical for a child with T21; that she displayed many characteristics of a child on the autism spectrum; that my answers led him to believe she was a child with autism; and that his observation of her over the time we chatted pointed to several key factors that would lead him to diagnose her with autism.

He asked me if anything he was saying surprised me, and I said, "no, of course not, I would have been more surprised if I came in here and you told me she was NOT autistic."

And then he said something in the most amazing way. In a way that made my heart swell with joy, that made me want to burst out smiling, that made me want to pick her up, swing her around in a circle with both of our heads tipped back, laughing the whole time.

He said, "she is always going to need you."

Without a second's pause, I answered, "That's good, because we are always going to need her."

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

So, that's it? That's all a diagnosis of autism, or T21 for that matter, means?!?!?

That she's always going to need us? That's the worst of the worst? That's what we fear so much? Delivered the way he did, it seemed like such a wonderful gift.

Wow. Wow to all of those people who contemplate termination of their pregnancies. Wow to those of us who live in fear of what adulthood will bring for our kids. Wow to those of us who close our eyes in the dark of night, or in the privacy of a shower and wonder "what if" "what if" "what if." Wow to all those worries, sometimes so unfounded, and yet so profound that they take over our lives.

She's always going to need me.

She's always going to need me.

She's always going to need me.

Hardly a life's sentence.

Rather a life's blessing.

You Can Call Me Bill...

So, today I felt like I had been thrust into a time machine, and totally flung backward nearly a year.

Normally, that would be a good thing - who wouldn't welcome the chance to re-live a year over again?

Admittedly, though, this news has come with a heavy sigh, a resignation, and a lot of self-talk to myself about digging my heels in, pulling myself up by my bootstraps, and jumping in again.

Paige saw her orthopedic surgeon today. Her hip is heeling well, although it is taking some time. She is walking with just a bit of assistance - she can walk holding my hand. She doesn't have a lot of stamina, and is definitely still very stiff. As expected, she is literally learning to walk all over again. The best way I could describe her ability to walk is "hobbling along" a few feet at a time.

One thing that is really amazing is that, for the first time ever, she is able to walk with her left foot flat on the floor. Since she began walking, her ankles and knees have turned in so badly that she was walking on just the inside of her feet, with her ankle bones nearly touching the floor. There is a marked improvement in her left foot.

However, her x-rays show that her right hip is in very bad shape - it was dislocated in the xray. So, we are now again on the "waiting list" for a surgery date - one that will happen some time in the next 6 months.

I knew this was coming, but I guess I put it out of my mind or something. I really expected to go and see him, and to have him say, 'come back in six months and we'll talk about the other hip. He didn't.

What he said is that he feels he has only a short window of time to fix her hip...as puberty hits, and she grows, her pelvis will change and it will become more difficult to perform this surgery.

So, here we go again....

I'm a rush of emotions - that night of the surgery is NOT one I ever, ever, ever want to re-live again. I never want to see my child in that kind of pain again. I don't want to hurt her little spirit, and by not being able to explain to her what is going to happen, I'm afraid that will happen. She'll be devastated to wake up in that stupid cast again. Once again, she will have to drag that thing around again for at least four months...not able to sit up or stand up or do anything really.

At the same time, I can't wait for it to finally, finally, finally be behind us. I can't wait to get to the point where we are not waiting on something dreadful to happen.

The times in her life when we haven't been waiting on the "next" thing have been small compared to the times when we have. Tonight I'm feeling melancholy and a bit sorry for myself and for her.

I know to be grateful - I know that "it could be worse" - much worse, and I know how incredibly blessed we are that we have people who can help her to get better.

I guess I had my hopes up for a nice uneventful year ahead, lol.

To top that all off, I am having some medical problems as well, and have been feeling really yucky lately. More than likely, I will need to address these problems and get them fixed - and somehow find a time to squeeze that in between now and surgery day.

So, the countdown begins again. Yahoo.

"She's a bit of a pre-snorer"

Paige is cracking me up when she goes to bed at night now. She has always mimicked Wayne when he snores - she'll come into our room, and stand beside his side of the bed and copy the sounds he makes.

Lately, when I tuck her in, she is snoring herself to sleep, lol. She will lay there, eyes wide open, and rhythmically snore - only she kind of does it in reverse - instead of making noise when she inhales, she makes noise when she exhales.

She will do that until she drifts off to sleep, and then she stops snoring - because she is asleep by then, after all.

Too funny!

Wisdom for my children...

1) Don't react immediately or make fast decisions. Time is a great provider of perspective; and allowing yourself a bit of pondering time can save you heartache, and apologies.

2) Name your fear. When you are feeling overwhelmed, and scared, try to really search your soul to see what is causing you fear. In my life, some of the most fearful things have brought me the greatest blessings.

3) Laugh every day. Especially laugh at yourself at least once a day. Don't ever take yourself so seriously that you can't find something funny in your every day world. That bit of toilet paper stuck to your shoe, or the piece of hair sticking up in the wrong place, or the tear in the seat of your pants will be nothing more than a story to tell in a few hours.

4) Love someone with your whole heart and soul, whether that be a lover, a friend, your sister or a parent. Find someone that takes your breath away just for their sheer existence - someone who makes your heart skip a beat with their beauty, inside and out. Please know, for me, I love the two of you in this way. Every single day, I am blown away that you are my children, that I am blessed to be your mother. I'm not worthy-and I know it. But, I sure do try.

5) Allow yourself a little indulgence once in a while, something you do for no other reason than it makes you feel like you are five again, swinging your feet without a care in the world. Sometimes this indulgence will be a simple as a scoop of chocolate ice cream, and sometimes it will be a tiny bit naughty, like skipping school to have an at-home pajama day, just because.

6) Believe. Believe in yourself. Believe in God. Believe in your convictions. Believe you can do it.

7) Make good choices. Bad choices will make your life unnecessarily complicated.

8) Be positive. Keep a healthy perspective. Be grateful. Look for the little things in life that will remind you of how wonderful this world is. This is perhaps the thing I wish I could hand you the most - a lesson I wish I could feed you, instead of one you have to learn. Some days, a cup of black coffee, a bite of a fresh strawberry, a stranger who holds a door open for me, my children's laughter, the dog resting his chin on my foot - all of these things remind me every day of how lucky I am to be alive.

9) Make a difference in this world. Please. Volunteer, pay it forward, pass it on - no career will ever make you feel more fulfilled than to know you are truly a good person deep down.

10) Watch out for one another. I am so happy that the two of you have such a special relationship. It fills my heart with the greatest of joy to see you two sitting on the floor, being all girlie - Dakotah brushing blush onto Paige's cheeks, helping her to pick out a nail polish color...brushing her hair. And the way Paige wraps her arms around Dakotah's neck, and squeezes with such abandon...pure, perfect love for one another. Don't ever lose that.

I love you two!

His Favorite Way To Be...

Soaking wet!!! Fresh from a game of fetch from the water - even has bits of stick still in his teeth!

I'm Still Here!

Its been so long since I've posted - its like going to church - you do really well going, and then you miss once, and its hard to get back on track again!

Life has been busy as usual for all of us. The girls have just 7 or 8 more days of school left, so we're finishing off end of the year things for them - final exams for Dakotah, IEP meetings for Paige...then field trips and special events at school.

We finished up our annual CHEO fundraiser by presenting a cheque on the Children's Telethon for over $15,000 again this year. We will never fully repay them for all that they have done for our family, but it is a start...

Our summer activities have started, and all of those appointments for Paige that I booked off until the summer will soon be upon me. As usual, Dakotah wants to travel to New Hampshire for a couple of weeks, and attend Journey to The Father.

Baseball season has started, and is taking up huge amounts of our time. Its tough to run 12 teams of kids from age 4-16, to keep schedules, make sure every team has everything they need, fill in for coaches, etc. Wayne is even busier than I am with it - I've sort of lost some of my inspiration, and really enjoy what I like to call the "public relations" part of it the most - you know, the part where I chat with the parents, cheer the kids on, and make sure everyone has water and orange slices.

Its the constant demand of paperwork and deadlines put forth by Little League itself that is really overwhelming for us.

Paige is doing well. We had her IEP this week, and I through some wrenches in for all of her 'team' to think about. I feel as if she can be challenged a bit more, and that, if we twist and turn our approach a bit, then we may find little niches that we haven't found yet for her to learn and develop better.

So, we'll see how that goes....

We'd love a summer pool in our backyard - it would be so therapeutic for Paige - she would be able to exercise those muscles of hers so much better. Someday!!!

All in all, life is pretty normal around here - and that's not a bad thing at all!!

Kate27, 30 & 37!!!

I was so happy to see you post on my blog, but your name is not clickable! Email me at BetsyBiskt@hotmail.com.

The Tulip Project

This year, one of the contributions that I will be making for "Livee's Loonies for CHEO" is a series of handmade cards that I have created with my sister, Kathy.

We have named this series "The Tulip Project" as all the cards in this series will have a tulip somewhere on them. On the back of each card is a note explaining why we have chosen tulips, and a little about the project.

This project is very near and dear to me, and its very good for my soul to look forward to it each year. I have been busy creating these cards and truly feel as if it is a labor of love to do so.

I am especially endeared to it this year, as we have had a very tough year medically with Paige, and she has been hospitalized 4 times over the winter at CHEO.

If you would like to order a set of cards, please email me at BetsyBiskt@hotmail.com, or call me anytime.

To view some samples of our work, please click the links below:

Set One
Set Two
Set Three

Thank you! :)

For Princess Livee

As many of you know, last year, my family was blessed beyond measure, when our friends Leonard and Carol asked us to be a part of a very special fund-raiser called "Livee's Loonies for CHEO."

Len and Carol are very good friends of ours, and we love them and their seven children dearly. The fund-raiser exceeded our greatest expectations - raising nearly $20,000 in just a few short weeks; all donated by friends and family.

Those weeks were one of the most amazing times in my life. I felt purposeful, and like I finally, finally had found a way to say thank you to so many who had meant so much in our lives.

I created this video as a thank you to Livee's friends and family, who have loved and supported their family. Over 100 copies were distributed in Eastern Ontario, to schools, friends, family, doctors, etc.

I've finally figured out a way to make it accessible on my blog...Powerpoint is not the most compatible program in the world to work with.

So, excuse the poor quality, and the words "evaluation copy" at the bottom of the slides.

Enjoy one of my great blessings...

My Daughter is....

"almost, sort of" WALKING

Is there really anything more than that to say?!?!? It is as amazing and glorious to watch her take her first steps after surgery as it was to watch them the very first time she learned to walk.
God blessed us with the miracle of perception - we waited six long years for her to walk the first time; surely we can wait a few months to see if it returns once again.

She is determined, and has surprised all of us more than once, as she first worked to sit up on her own, and then to lay back down, and within a couple of days, to pull herself all over the room, and then soon, she was on her hands and knees - and then trying topull to stand at the table or the couch or near the computer.

She is working hard to shift her weight from leg to leg to start taking those first steps...

She has a lot of muscle tone to recover, but she is getting there....

She is...simply amazing.

I say that as if we didn't already know that. yeah right.

Our Daily Dose of Dave

Hop on over to Chewing The Fat - and read Dave's "10 Bits of Advice" for parents of kids with disabilities.

Dave blogs every day, and always has something interesting or thought provoking to say!

Beautiful Birthday

If you click on each picture, you will see them in a larger size. Isn't she precious :)

Happy Easter and Happy Birthday!

What a wonderful day we had today! Today was Easter, and also Paige's 11th birthday. She was happier and more animated than I have seen her in the last 6 months. She smiled and giggled all day long, and was very happy to have a houseful of company for most of the day. She enjoyed opening all of her gifts, and it was so nice to actually sit her at the table for dinner.

We got some really beautiful pictures of her - I'll post them tomorrow.

Happy Birthday, sweet girl - I love you so!!

Happy World Down Syndrome Day!

Today is World Down Syndrome Day. I am so happy to be a part of such an amazing celebration of diversity and friendship.

This year's theme is "Aim High Enough" - a quote by Dr. John Langdon Down - the scientist who discovered that Down syndrome is a triplication of the 21st chromosome.

If you know someone with Trisomy 21, please let them know you are thinking about them today!

Cast Free!

Paige had her cast removed last Thursday after nearly 6 months in it. It was so neat seeing her finally free of it. She has lost a lot of muscle tone and a good bit of weight - her little waist is so tiny - at nearly 11, I would have no trouble fitting a size 4 pants around her.

The first couple of days were rough - she was uncomfortable, and did not want anyone trying to get her to move - she wanted to do it by herself. She was moving very, very slowly and it took her 3 or 4 days before she could push herself to a sitting position.

The surgeon is project 6 to 12 months before fully mobility returns. But we are seeing changes every day. She is getting stronger and tolerating a little bit more every single day. With some support, she can take 3 or 4 tiny steps. It still seems to be very sore, as she is favoring her left side a great deal.

I'm so happy to have this behind us, and pray that it will "stick", as only time will really tell us.

I called my sister on the way home, and told her, "I am so very lucky - most moms only get to see their child's first steps once - I get to see them twice!"

We All Love Babies!!

And this little guy is completely, utterly, totally adorable!!!

Hop on over to visit Chris at Mothering by the Seat of My Pants. Chris has three kids - and her youngest, John, was born with Trisomy 21. Chris's blog is heartfelt and real - a wonderful perspective of this journey many of us are taking upon learning our children have Down syndrome.

When I meet new parents, I always encourage them to write, write, write - because it is an amazing thing to look back at your initial thoughts and feelings even a year or two into the journey, and to see how much you have grown and learned and evolved as you have come to fall hopelessly in love with your little one.

Chris is getting her feet planted on the path, and you can tell by her words that she is introspective and thoughtful, and that she will cherish this experience.

Thanks to one of my bestest buddies, LauraQ, for pointing me her way!!!

Meme

This is my first ever created meme - and I am tagging all my wonderful friends in the T21 community. Read my story below about Jake, and then blog your first experience with someone with Down syndrome.

Come back and leave a comment, and I'll add a link for you to this post.

Thanks for playing :)

Betsy

Jake

This post is inspired by Dave Hingsburger who writes about his first time meeting a person with Down syndrome.

I first met Jake when I was about 14. His mom hired me to babysit him one day. I knew Jake had Down syndrome, but she never mentioned it. I guess in 1978 it wasn't as easy to integrate it into every day conversation as it is for me to do now.

Its funny how I can remember almost every detail of that day, more than 25 years ago. Jake was a happy, easy going little boy whose glasses fell to the tip of his nose many times. He would take his chubby little hand and push them back up again, never frustrated at how many times he had to do it.

We decided to play with his fuzzy pumper Play-doh toy, putting the little people on the barber's chair, and squishing play-doh through the holes of their heads so that we could give them a haircut. We made crazy hair styles, and had great fun playing - play-doh is also one of my favorite things to do with my children - nothing gets imagination and conversation going like making "cookies" or people or anything you can dream of.

Looking back, I'm sure we played with play-doh just because we wanted to, not because anyone had assigned the task to help with fine motors skills for Jake. And how nice that it was just a kid being a kid.

I had so little experience with anyone who was different, and had no idea what to expect from Jake. I didn't know what he understood and what he didn't, what he liked and what he didn't. All that I had learned from my own mother was so stereotypical - she used the antiquated words to describe people with developmental delays, and assumed they were all the same.

I remember telling my mother when I got home that day that Jake's hands were really dry and rough, and she told me that "their hands are always like that." For years, whenever I met anyone with Down syndrome, I was very conscious of their hands...always looking for those dry rough hands.

Today, one of the things I love the very most about Paige is her hands - soft and supple and very sweet. How very wrong my mother was.

After his lunch, we went out on their front porch to play. Jake decided to go into the house and when he did, he locked the door behind him. I tried to talk him into unlocking the door for nearly an hour. I teased and pleaded, and then....I knew....

I learned a lot about Jake in that hour it took me to convince him to open the door. I learned that he was sorely underestimated. He wasn't unlocking it because he didn't know how. Oh no...

That big belly giggle as he looked out the window beside the door told me he knew exactly what he was doing. He was in and I was out, and he was going to decide when that changed. He was very clever, and thought it was hilarious that he held the Power of the Door.

He would wander to the kitchen table, where he colored and sat for a bit, and then come back to the door to make sure I was still there. After a while, he tired of being alone and let me back in the house - opening the door lickety split when he finally wanted to.

Many people would read this, and say, "oh, people with Down syndrome can be sooo stubborn sometimes."

I don't know - in a world where everyone is always telling you what to do and when to do it, "stubborn" is probably a very good thing...

Strangely, I don't remember if Jake could speak or not. He was about 9 years old at the time, I think. I don't remember having any difficulty communicating with him, and knowing what he wanted as well.

I don't think Jake ever attended school. If he did, it was most certainly a "state school" for children who were classified as mentally retarded. I'm sure he never received any early intervention services like Occupational, Speech or Physio Therapy.

He lived across the street from the High School's soccer and baseball fields, and often I would see Jake riding his big wheel around and around in the parking lot of the fields when there were games going on.

Everyone knew Jake, and everyone watched out for him.

Last I knew, Jake worked as a janitor at the local high school - a school that would have refused him entry when he was a teenager - a place where he was an outsider at best. He's had that job for many years, and everyone at the school knows him. I hear he loves to get the newspaper every day and look at it from front to back. I'm not sure anyone ever taught him to read; I'm not sure it ever occurred to anyone that he might be able to learn.

I don't know if Jake's family still lives in the big yellow house with the front porch anymore. But if they do, I'd sure love to see Jake again - to sit on the front porch with him, and tell him thanks.

I understand, Jake - sometimes I want to lock the front door and watch the world from the window too. But sometimes, ya gotta take the Big Wheel out for a spin too...

Patience

"My heart...
My soul...
My life...
My darling Paige...
Together, we have no limits"

This is the note that I placed on Paige's incubator when she was born so critically ill. I wanted her to know that I have no limits when it comes to mothering my children, that I will always be there for them, and that together, we can get through anything.

I remember them telling me as they intubated her over and over again, that she was "tired" and I would become so frustrated - how could she be tired, she was a newborn...how could she be tired of living and breathing already?

I spent a lot of hours with my face inside the little round portal that allowed me a glimpse of my newborn baby - I would talk to her and sing to her, and reach for her hand, one of the only parts of her body that was not covered in medical equipment.

Over and over, I promised her patience - that I could wait for her to be o.k. - that if she needed more time to heal and to grow, I was right there beside her, cheering her on.

And, as the story goes, grow she did - into a beautiful young lady of nearly 11 now.

One of the difficult things I struggle with is the knowledge that I am the mom of a child that would be considered "medically fragile."

I don't much like that role; I'd much rather just be Dakotah and Paige's mom...

Because admitting that my child is medically fragile, and by all accounts, really is, puts me into some sort of weird superhero category that I don't really deserve or want

She was hospitalized nearly a hundred times in her first years of life, with 20 surgeries under her belt before her 5th birthday.

Somehow, that makes me a person to be admired and respected - someone who has bravely gone through a lot, sometimes too much...

But, I'm not that at all. Not at all. I am no more special or brave or any of those other things than any other mother.

I also don't ever want to be held up as the example of how "tough" it can be to have a child with Down syndrome - because it certainly has been one of the greatest blessings of my life, and I am so, so grateful to God for haven given me the opportunity.

These last months, where Paige has been in a full body cast, have been hard on me sometimes. Admittedly, I've had quite a few moments when I have had to remind myself to be patient, that this isn't a race through life, but rather a journey with many paths, each one offering up beauty and lessons if we open ourselves to them.

Other than her first year of birth, when I thankfully had no idea what lay ahead of us as far as medical issues, this has been the longest lasting medical problem we have dealt with. Paige has been in a cast for nearly 5 months.

During that time, I've had to adjust and re-adjust, and then re-adjust again - her schedule, her school, my job, our lives, everything has been affected by this.

And...the reality is, we won't even know if this has been successful until the cast is off, until she tries to walk again. We may very well be facing this all over again in her other hip; we may have to face the reality that she will not ever fully recover from these problems.

So, my heart has been heavy at times, and I have felt very defeated sometimes.

I have a newfound compassion for people such as Tammy, Parker's Mom, and Pam, Rhett's Mom, whose children have been chronically ill, and who's lives have been tumbled upsidedown because of it.

My friend, Melissa, who's daughter has a fatal condition, loves unconditionally, and tirelessly, with the knowledge that Bella is not going to get better.

This morning, I read the news that a very nice person, who's daughter with T21 died at 18 months, has now learned that her five-year-old son has a cancerous brain tumor.

I am not worthy of these brave people who's lives I've been so lucky to learn about. I cannot even comprehend walking in their footsteps for a day.

But, if I were able to, I'd follow along behind and lighten the load as best I could.

And as I walked behind them, I'd remind myself of some very wise words from my friend, Nicole...to "get over myself"

The world is such a beautiful place - and I am grateful to be a part of such a glorious community of friends.