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!





Tuesday, December 14, 2010

Holiday

I'm afraid to write about this. I'm afraid that it's not going to happen. I'm afraid that Joel is going to get sick or something else and then it won't happen.

Because Steve, Caeden, Joel and I are "going away" for a holiday. It's the only one I can see us making, at this point. It's not much compared to some holidays, but I am very, very excited about it. I don't think Joel will make to or past the magical age of three when he'd qualify for a Make a Wish, and I don't know if he's still around if he'd be able to enjoy it anymore anyway.

We have booked two nights at a hotel here in the city. Quite a few of our friends with families from our church are going to stay there at the same time, so it's going to be quite a party. It's a family friendly hotel, with a huge, three story play area for kids, besides the pool. We have booked a suite with a two-person jacuzzi and I'm really hoping that Joel will enjoy that part of it.

It will likely be our one and only "trip" with Joel. I hate putting him in the car for any length of time other than 30 minutes. I just don't trust his breathing in that position for too long. I think it is too tiring for him. And taking a plane somewhere doesn't seem much better. It would be an ordeal for all of us.

Not to mention that the thought of a new hospital and strange doctors, in the case he became ill, just about throws me into fits. And all the rest of it, like the worry that his meds might get lost, or that his CPAP will break down, etc, etc, etc.

But this is a trip I can do. We'll throw the O2, the monitor, the CPAP, the meds, the pump and accessories, the formula, the playpen, the stroller, all of it in the car and we are only 30 minutes from home if we forget anything important. And only about 15 mins from emergency, where they know us very well.

And it's enough for us. Caeden will absolutely love it, playing with friends and sleeping in a hotel will be big, big excitement for him. It will be a change of scenery, and if Joel enjoys the jacuz, I intend to live there with him. We can eat in the restaurant, but if Joel is just not up to it, then we can order room service and let him sleep in his playpen. And room attendants will make my bed - :) Whooo hoooo.

I think I am looking forward to this as much as I am to Christmas. As long as Joel stays healthy. Which goes for both Christmas and the trip. It all depends on Joel keeping stable for the next three weeks. But I still can't help feeling excited. I hope I'm not going to be disappointed...

2 comments:

  1. I hope everything goes well and you have a great time! Sounds like a great way to "get away"!

    ReplyDelete
  2. Praying you will be able to take your holiday and that it would be enjoyable for all!
    Love, Jenna

    ReplyDelete