Appointments and other things.

Ok, it's really about time I wrote in here. It's not that I haven't had thoughts, I have. Just more that I haven't been sure that those thoughts would be of interest to anyone else. Particularly as they were only very slightly Joel-related, or else they were Joel related, but sounded more like complaining than anything else.

Here is an update on things. First of all, the appointments on Monday all worked out ok. The neurologist and the feeding clinic were great and very necessary for us. When it comes to seizures, the neuro and I sort of worked out an understanding. She knows I'd like to be more aggressive in treating them, as I think they might be undermining some of Joel's quality of life. She's going to try to do that, but also will still be cautious because really, the only reason we want to control Joel's seizures is to make him happier, and we are trying to balance that with side effects from meds. If we improve his life when it comes to less seizures, but make him more unhappy due to side effects, we haven't accomplished our goal, which is just to make him happy.

And we got a new and smaller GT and it's not leaking nearly as much, so maybe we can start to gain a little weight.

Funny thing: a day or two after the appointments, I got a notice for ANOTHER appointment, on Dec. 22nd!! This one was the heart clinic, doing a follow up because when Joel was in for diagnosis, one of the tests they did was to check out his heart. Good grief! Seems like everyone wants to see us before Christmas! So I gave them a call. We already know that Joel's heart is ok. It's the least of our worries! And the heart work up takes from 2 to 3 HOURS. Which would be very unpleasant for us both. They still have to get back to me, but they better say I don't have to go. Because we are NOT going. ;)

I also managed to cancel the appointment for the metabolic doctor and he'll call me if he has any questions. So that was great. The endocrinologist appointment from Monday was rescheduled. I didn't love that, but what can you do? :( At this point I suppose we have to go in.

Symptom Management and Palliative Care came to our house for an appointment. I can't tell you how nice that was. Joel was in a happy mood, though not especially playful, he did have some nice smiles and babbling to show the doctor and nurse. I love that, because I don't think anyone ever gets to see that side of Joel in a regular appointment, even when he's well. The appointments tend to be in the morning and he's usually still very sleepy and of course, hanging out at the doctors just doesn't bring out the bubbly happiness. In me either!!!

Anyway, I didn't put on any make up and I drank my coffee while we chatted. It was just so nice to be in an atmosphere where we could feel more relaxed and more free. I said stuff I never say in the hospital, because there I'm always trying to be "professional" and also I don't want anyone else to hear if I say something negative. I know the palliative care doctors would keep a confidence, but a hospital is no place to be anything less that tactful and diplomatic. It was nice to feel less "on guard" and get to say what was on my mind without having to be so careful all the time.

Plus, I love those people, they are so warm, caring, and understanding. I guess you don't go into care of dying children if you don't have these qualities. I'm guessing that you gotta have a large place in your heart for this if you are going to do it on a day to day basis. And it would be impossible for me not to love anyone who likes or cares for Joel. It's pretty much a shoo-in to my affections!

And they are the doctors I feel the most respect from. I see all sorts of attitudes toward what I say, from skepticism and annoyance and impatience, to attentive listening, and then there are doctors who really listen and consider what you say, and even value it. It's nice to really feel respect from doctors.

They seem better able to see and understand how much quality of life we experience with Joel and in Joel, and they seem better able to understand that with how much we love Joel, we will do our best to keep it as long as we can, and then let him go when we know it's time. It is so great to have doctors that can see that, as sometimes I feel like some of the other doctors we've met have been "secretly" thinking that Joel has no reason to live, but we just can't let go. We really are not that selfish. We wouldn't try to keep him so hard if we didn't know that he also enjoyed his life very much, even with being sick or irritable from time to time.

And getting respect and understanding from the medical people you are working with is priceless.

Because sometimes I want to cry out about how HARD this is. How it is really, really hard, every single day it's hard, even on the good days I'm dealing with it all. Then I'd just sound whiny, and maybe I am whiny at times. I know that it is impossible for anyone to really know how hard it can get. And I think that what people often see is sometimes the only thing I can show them: me smiley and things good and no tears for us. I wish I could really have a good sob sometimes, and let it out more with my good friends, but as I have written before, I can't seem to unlock the chest of grief at the right time.

And there is a lot of happiness still. That is the thing, there is still so much happiness and it's hard to know if anyone can see how hard it is underneath all the happiness. I'm really not being "fake" or putting it on all the time. There is just truly lots of happiness in my life and with Joel, that happiness is like a lovely mist which wells up and conceals the hard and rocky ground I have to walk on underneath it. The mist is so pretty and soft, it's hard to see how the rocks hurt my bare feet.

Which is one reason I write this blog. Not because I want everyone to say "Poor Karen, how hard it is for her!" But because I want my friends to really know me, to be honest and all that other stuff. It helps me to weep and wail a little and get some of the heavy, massive sadness out of me. Plus I hope that the "next" time they have a person in their lives with a heartache, it will give them a tool to come along side that person.

I am so grateful when I can get along side someone else who is hurting and listen and care for them. I suppose that sounds like a terrible thing to be grateful for! But it is truly a gift to me. It takes me out of my own self, and thinking how hard it is for me! I get to think about how hard it is for someone else, and that is a blessing. I hope it is a blessing for them too, and when it does seem to help them, it's an even bigger blessing for me, to know I could use my own pain or sorrow to help someone else with theirs.

Ok, I've really gone on here, it reminds me of what my university profs used to call "stream of consciousness" writing. Yeah, don't get me started on that one, Virginia Wolf! So, sorry. It's all loosely connected in some way, really.