Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Wednesday, December 29, 2010

Staycation

I can't believe it. It's come and gone. First Christmas, and now "Staycation." It was much too short. We all could have easily stayed for another night or two, but hotel rooms with hot tubs are pretty pricey and I don't think the budget would hold. Besides, everyone else was clearing out. But it sure was fun.

Caeden absolutely loved it. He swam in the pool for 2&1/2 to three hours yesterday. He played on the play structure. And when I say play structure, I mean a massive three story pirate playhouse with air cannons and nerf balls (need I say how much my boy loved this?) and tunnels and slides and all big enough to accommodate even an adult standing up. It seriously is incredible. His best friend was there too, and so many other children to play with. There even is a craft room where he made something. Yes, something. Not exactly sure what, though it had humanoid characteristics. The hotel is totally geared for families and it was lovely. Not to mention the excitement of sleeping on a pull out couch nearly did us all in. Caeden fell asleep after 10 both nights.

And Joel? Well, he is a lot harder to judge, because he wasn't in the most smiley or giggly mood to begin with. He did great, though. He seemed very comfortable for the most part and the hotel life made it easy. He slept as good as always. He tolerated the trip (about 45 mins) both ways pretty well. And yesterday evening he even had a fit of good humour with friends, Lauralee and Peter. He loves, loves, loves people. So he got cuddled and talked to and had his head stroked and he smiled and laughed and even babbled a bit. He really enjoyed it. It was great to take him to the restaurant and know that if he just got too uncomfortable, we could box the food and just head up to our room. It was also great to let him sleep in the morning and just order room service breakfast.

And it is absolutely for sure. If we make it to our "Make a Wish," we are absolutely getting a hot tub. He really enjoyed it. Unlike most children, he LOVED being in a tub of water at 100 degrees. He really seemed to like the jets and he just relaxed. I'm not sure how long a cycle of the jets lasts, but I think it must be 20 or 30 minutes and no tears or sign I needed to take him out, unlike a bath, where I get to the part where I rinse his hair and he is already unhappy. It was so nice to hold him in the water and let him enjoy doing something "physical" and stimulating, as well as being held and having some "mom" time too. We only got to go in twice, because he spends almost 8 hours a day hooked up to his tummy pump (which is not hot tub compatible). But it was still worth it to me. If we had a hot tub, we'd be in there every single day, I promise you. Money well spent, to give Joel his own special treat on "Staycation."

And Mommy and Daddy enjoyed it too, after the kiddies went to bed. It was nice to be with lots of friends, and have them drop in for a visit and to play some cards in the afternoon. It was nice to do something "normal" as a family. It was bittersweet and emotional. It was full of "what ifs" and of the feeling you have when you know you are doing something for what is likely the first and last time. It was very special. Our first vacation as a family of four. And if I can get the camera downloaded, I'll try and share a few pictures.

1 comment:

  1. I should have read your posts in order! Glad you all had a good time! Who wouldn't enjoy a hot tub?

    ReplyDelete