Friday, April 22, 2016

Nothing Beats A Quickie!

The Things We do for Our Children When They Do Not Even Realize...

Ailsa loves dressing like "twinsies" with Zoe.  She loves to have Zoe wear the same colours as she is wearing.  And sometimes, she wants Gavin or I to do the same.  This morning Ailsa asked me to wear my yellow T-shirt when dropping her off at school.  Ailsa was dressed in black leggings and a yellow/ orange/ multi coloured shirt.  The only black leggings I have are fleece.  I usually wear them under pants in winter but ok, sure why not.  As for shirts- I only have one yellow shirt.  This particular shirt just happens to say,

"Nothing Beats A Quickie"

Nothing beats a what?  Why would I have a shirt like this?  Well, Quickie just happens to be the name of Zoe's wheelchair.  Hers is actually labeled as a Zippy.  I guess the smaller chairs just didn't seem right with Quickie written on it so they changed the smaller chairs to "Zippy" instead.  Two years ago at Easter Seals Mom's Camp (an amazing weekend away for moms who have children with physical disabilities) I was given this brightly coloured shirt.  Of course, they only had extra-small size by the time I pulled up to camp late.  So I have a very small, tight fitting, bright yellow T-shirt that says, "Nothing Beats a Quickie."  And this happens to be written in large, bold letters across my chest.  This is the shirt Ailsa would like me to wear while bringing her to school.

Why not?  I'll grab my light jacket and put it on top.  No problem, right?

No problem, except school is 1km (2/3 of a mile) away and I am sweaty by the time I jogged to school pushing Ailsa in the stroller the whole way while she read me her homework book (yes, I am teaching awesome homework habits already!)

I kept the jacket on while in the school yard.  Despite the sweat running down my back, I kept that jacket on.  I did not think typical parents would understand the joke on my shirt.  And I was pretty sure the moms would not appreciate me "flaunting myself."  So there I was, sweating and smiling and waiting for that damn bell to ring.

On the way home, I strip off the jacket.

So there I am, in tight fleece leggings and a very snug small T-shirt.  I've put on five pounds since I had a medical procedure in February.  Five pounds is not a lot of weight but after spending over a year working really hard to lose 35 pounds and finally, finally, finally being at the weight I felt comfortable at, putting on 5 pounds suddenly makes me slightly self-conscious.  And so, even if the yellow shirt did not proclaim to all the world that I love quickies, I would not walk around my neighbourhood in tight pants with an even tighter bright yellow T-shirt!

On the positive side, there were some young men doing construction in the street and one stopped, smiled and gave me a thumbs up as I passed.  So I can only assume he must know someone who also has a Quickie chair and understood my joke...

Monday, April 4, 2016

Happy Spring!

Oh what fun we are all having this Spring!  We have been busy going to the Women's Hockey game, fun farm, maple festivals and of course- Zoe's birthday.  These months have been so busy in good ways.  Our house is a complete mess but hey- we are having fun!

 One last snow picture- this is from this morning.  Ailsa loves when we toboggan to school.  Hopefully this is the last of the snow.

 We went to the Canadian National Women's Hockey game.  As usual, the girls loved being at a hockey game.

Zoe feeding a goat at a fun farm.  They had a bouncy house which was definitely a favourite.  Gavin or I went in with Zoe and Ailsa so that we could stand above Zoe to bounce her and guard against her getting stepped on- not that she would have minded!  Ailsa rode a pony for the first time.  She was so excited to be like her big sister, riding a horse.

 Zoe turned 9 in February!!!!  Ailsa planned a surprise party for Zoe at Boston Pizza, one of the girls favourite restaurants.  The biggest surprise was that Zoe was actually surprised.  Ailsa "whispered" about the plans for weeks. 

 Sadly, the day of Zoe's party was also the last day Michelle was here as our respite worker.  Michelle (a wonderful nurse that we have been lucky to have as part of our life) has moved to Windsor to live with family and work in a Detroit hospital.  Finding work in Toronto right now is tough with all the cut backs.  We are so excited for Michelle to start this next chapter of her life.  And we know we will continue to keep in touch with Michelle.  You can see in the picture how attached the girls are to her.  Michelle has been such a huge help to us all.  We will miss her!

We hope for more fun days.  It is so nice to be busy with fun things rather than just medical.  There are still plenty of medical things going on- some minor illnesses and multiple hospital visits.  I don't want to give the false impression that all is perfect here.  I think it is important to show the good with the bad.  My hope has always been to give hope to those families struggling with similar medical issues.
This picture here is a good example of a wonderful day that takes a lot of work.  Going out and about with Zoe takes a lot of preparation, time and energy.  I heard people say that we make it look easy.  I want to be sure to say to those of you who are doing the hard work and struggling at times just to get through the day, we know what that is like.  We are living it too.  We are lucky to get those lovely smiles from Zoe and Ailsa that make all the work worth it.  Living a life like this is difficult to explain to anyone who has not lived this way.  During spring break Zoe went to Emily's House for camp.  She had an amazing time.  In fact, she had so much fun she refused to come home on Friday and stayed an extra night!  During the week, we made a camp of sorts for Ailsa.  We went to Legoland, swimming a couple of times, skating, etc.  I hesitate to say it, but doing all this without Zoe was so much easier.  I do not feel guilt saying that- it is just a fact.  But I do feel sadness.  And after all these years, I still feel grief at times.  I grieve for the life we should have had.  I grieve for all the things Zoe misses out on.  And everything Ailsa misses too.  I carry that sadness and grief with me, always.  By the end of this day in the picture, Zoe's lower legs had turned blue and we ended up reviving her circulation for 40 minutes in the van with the heat blasted.  Times like that are very scary.  We begin to worry, should we treat Zoe more carefully, like the medically fragile child that she is?  But for us we know the answer is and hopefully always will be to give all of us as much life as possible.  We love doing things as a family and at times that makes activities more difficult but it is definitely worth it.  And some days, like this day, we even get a few cute pictures to share with all of you.