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.

1 comment:

Heather Thorup said...

Loved the post, Alisa sounds like the sweetest sister! I can't believe Zoe is 9! Crazy! And finding a respite worker that you get to know and love is a rare treat. I hope you keep in touch and find someone else! I understand what it's like doing things with the other kids and how it feels so much easier, and then feeling guilty for feeling that way. And still carrying around that grief- ditto here. I don't know if that ever goes away. It's kind of special though, to have the perspective from both sides. You do make it look easy, and it's wonderful all you do for those girls! Hugs Momma!