DREW'S HOME AS OF WEDNESDAY
It was ridiculously hard to get him discharged. Mostly, it was due to BOTH the nursing companies we've used the other times he left the hospital restructuring. Crescent Health care, who did the IV servicing, no longer is a home visit company. They only provide the medicine. They wouldn't unless we could set up visits with another company. The company we used when the IV would finish was Sutter Visiting Nurses Asso (VNA). They were beginning their own pharmacy as of this week so they could also provide the medicine but refused to start until today. Drew had already been told Monday he could go home and they kept putting it off. There was no way he'd have waited til today. Somehow, Drew's mom worked her connection magic to get them to send the medicine rushed on Wed and start visits yesterday. It was all bureaucratic crap anyway. So he's home and very happy to be. The wound looks better. No longer black with dead tissue! Still on IV antibiotics to prevent infection.

So I got my French Memo Board today. You can enlarge the photo by clicking on it. I'll be using it as a memorial board for photos of mine and Drew's family who will be at the wedding in spirit but not body. As you can see I'm using meanwhile for just whatever I want to have up. The baby and the kids are my bros. Black and whites are my mom when she was a girl. It's esp nice for wallet size ones and those ribbons actually hold up. That was the only thing I was concerned about, that'd they'd be too loose. Some have suggested it will make me sad to have photos up as a way to honor my dad and my grandma who died when I was 17. I don't think so. First of all, it will be by the guest book at the reception. We won't be looking at it the whole time. I also don't think it means that we're distracted from the focus of our wedding to choose to consider these things. Drew and I both feel that it is part of our celebration to remember those we love that are no longer with us. He was very close to his grandpa who had Alzeimer's. He is going to think of his grandpa as the smart, fun guy he was before he developed the disease. And how happy he would be to know Drew is marrying me.

We won't be thinking of disease at our wedding. Except how our love has triumphed over the adversity of his pressure sores. Drew's health condition has run our lives this year. It has been excrutiatingly hard on both of us and also on Drew's family. When others say in sickness and in health it is abstract and a far off concern. For us, it has preceded the wedding. We know it now and know how much greater our love is than any pain life can throw at us. The wedding is about us and our love but we are not celebrating alone. If we were we'd have eloped. We will organize it as we want but many will be celebrating with us. When I have said we will be lucky to marry, I mean that literally. We have both been concerned that his pressure sores would prevent the wedding from happening. No matter what, we'll have to be flexible. But we are determined to share our love with those that mean something to us. His grandma is very ill but she is determined to see us get married. It means more to us everyday to have this day. Not for the piece of paper, not to devote ourselves to each other. We've already done that. We want those who want to, to experience our devotion with us. I think this is what all weddings should be. In light of that, we only want those who attend to respect our feelings (whether they agree with them or not).

Everyday, life is more uncertain due to complications from his pressure sores. I had a meltdown a few days ago as the reality of the severity of the wounds. I'm not going to mention it all here as it's too upsetting. At one point I was shaking from being so upset. His family and I have done all we can to be optimistic about this situation. We have also supported each other. But we haven't wanted to accept the very ugly realities of the situation. Nobody would. We can only hope his body beats the odds. The odds being the possibility he would need to spend long portions of the day in bed even after recovering from the surgery. That he would not have the freeedoms he had before last Oct. He had just gotten to the point of accepting being disabled and now is faced with more infringement on his mobility and independence. Regardless of his physical needs he also has emotional ones. Balancing those needs is extremely hard right now. It may continue to be.

We have been thinking of the recovery from the surgery as the light at the end of the tunnel. This is probably not a good way to think of it. We will also have to be as vigilant about pressure on his body afterward. He will have to start new habits and those habits will be for life. Having gotten 2 very serious sores (that word does not stress the severity enough. They aren't like regular sores.) already makes him MUCH more vulnerable to get more. If he were to get another one in one of the same 2 places it could be deadly. See how serious that is? They don't know why some people get pressure sores and others don't. They don't know why he didn't have any for 6 yrs or why his developed SO big, SO fast. This is, of course, very frustrating, but it is the reality. Not one he was made aware of until too late. (Somebody dropped the ball there) Not one he accepts easily but he is slowly. The way medical people put it is often not very tactful so he resists. He feels like people are writing him off as a lost cause. I would, too. It's so hard. It's like being a cancer patient. Suddenly, you're just a statistic. He will have to be VERY, VERY, VERY careful. Careful=less physical mobility and physical independence. We will have to start thinking of new ways for him to feel independent. He is still mentality VERY independent. He will need to think of his mind as his main source of independence. I'm calling this Realistic Optimism as opposed to Blind Optimism.

We will also be lucky to go on a honeymoon. It will have to be short. We'll have to make the most of it ;) Still planning on going to Vancouver/Victoria Is.

Of course, this is not "what I signed up for". But what I signed up for was to love him. Some people don't get it and may never get it. But when you find the person who makes you most happy and more happy to be yourself than anyone else you want to hold on to that regardless how much it's challenged. Some of you get that :)