Friday, July 25, 2008

Thanks, Randy Pausch

Randy Pausch
Achieving Your Childhood Dreams

Rest in peace, 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...

Saturday, July 19, 2008

"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.

Monday, July 07, 2008

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 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.

Thursday, July 03, 2008

"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!

Tuesday, July 01, 2008

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!