Catching Up

Well, I've got some catching up to do! It's been a crazy sort of week. Mark has developed some new and rather worrisome symptoms. But let me back up a bit.

We found a dog! Well, Judy Herring (Jason's mommy) called and asked what we were looking for, etc. She has seven dogs herself, and so (obviously!) knows and loves them well. She told me about a young dog on petfinder.com and said she'd be willing to go in with me and take a look at him if I wanted. So Saturday morning we set out to meet Rikki.

On the way to Salem with my boys, Kayte, and two of her friends (whom I had just picked up from a slumber party), the cell phone rang. Mark had gone into SVT and was on his way to the hospital with our friend Rod. I thought about turning around, but we were halfway to Salem by then, and Judy had taken this time out to go with me, and Rod and Mark both said to just keep going. So we continued.

We got there and discovered that Rikki was not for us. He LUNGED into the room, clearly intent on exploring and conquering. Brendan, from his perch on the chair in the corner, said, "We don't want that one!" But we fell in love with this other little mutt named Monte. He was busy enough to entertain the boys, but he was equally happy to climb up in our laps and be petted. Perfect! So we started the process to adopt him, although we were told that we would have to leave him there over the weekend to be neutered.

So I left there, drove 40 minutes back to Dayton, dropped off Kayte's friends, took my own kids home, and went to the hospital to see Mark. Got there to find that he had slipped back into SVT and this time they'd had trouble getting him out. They had been on the phone with the anesthesiologist, getting ready to put him under so that they could shock him. Thankfully, he did convert without that, eventually, but the medication they gave him made his blood pressure crash through the floor, so then they had to deal with that! It was a little scary to walk in on that and realize what could have happened while I was off dog shopping! Well, they kept him overnight, but Sunday afternoon, he got to come home.

Meanwhile, Kayte's plans to go to the fair with her friends had fallen through at the last minute. I didn't have anything planned for her because she had planned to be gone from Saturday afternoon until LATE Sunday. I have a party planned for today, but I didn't have anything going Sunday for her. And I was nearly broke! So I had to scramble in my mind for something not too expensive and somewhat fun to do so that she didn't end up spending her 13th birthday bored and alone. I picked up a cake mix and made her a cake. Then, after I got Mark home from the hospital and settled, I took her and two friends for pizza. Then we did a little browsing Third Street. (Kayte bought herself some cute earrings.) Then Rod, Billie Jo, and Shawn joined us for cake back at our house. Mark was even able to come down and join us for about an hour. It wasn't nearly as exciting as going to the fair, but Kayte seemed happy, so that's what matters.

Yesterday, I was getting ready to head back to Salem to put down the deposit on the pup when Mark's heart starting acting up again. I stalled, waiting to see how things would go, and ended up taking him to the hospital instead. I called the Humane Society from the hospital, and they quite graciously agreed to hold the dog for us without the deposit since I had "legitimate circumstances." I was really relieved. The kids have been SO excited about this dog. I couldn't exactly not tend to Mark, but neither did I want to lose the kids' dog!

Well, with that out of the way, I was able to turn my attention back to Mark. His cardiologist had originally said he wanted him up at OHSU, but he and the doc on call in the ER decided he was stable enough to come up later in the week as an outpatient. They put him on a new medication to hopefully keep his heart from slipping into SVT anymore, but they are probably soon going to do an ablation, which is like a cardiac catheterization, except that they go in and locate the area that is sending out the faulty signals and burn it so that it stops misfiring.

Late afternoon, they released him. I came home to a call from the Humane Society. The lady was SO sorry, but it turns out that when Monte is under stress, he bites. Hard. Oops. She was so apologetic. I said, "Hey, it's not your fault! I'm rather glad we found this out ahead of time." They know our situation and are going to help up look for a dog that will fit our needs better. In the meantime ... I guess we wait!

But for now, I need to get off my bootie! I need to cook up the "batter" for the blueberry ice cream for Kayte's family party tonight, and then I need to go school supply shopping. And then off to the park to meet Brendan's kindergarten teachers...

Onward

All right. I know my last post was pretty bare bones, but I was so horribly depressed by the news we got yesterday that I really didn't want to let myself start "oozing" in public. Today, I'm much more "together," so ... here I am! Mark is still not well, although that is no surprise. He has always been full of surprises, medically, and this may just be a phase. But my strong suspicion is that he has pretty much seen the end of "good days." I found an email from him when I got up to write this morning. "Wake me at 7:15. I don't want to lose another day." He really wanted to go in and do some work at the church, but once he had showered, he was too exhausted. By late afternoon, the pain had picked up again. He was afraid we would have to go to the ER again, but the Vicodin he took seems to be keeping the pain steady. It's still there, but it's not increasing so I THINK we should be able to stay home tonight. He's having trouble sleeping though. Even with three pillows, the pain in his chest is just too severe when he lies down. I think we may have to think about getting a recliner soon, or a bed that goes up and down.

The thing that concerns me is that this is his "good" time of year, historically. Ever since I've known him, the winter has been hard on him, starting in about October. If he gets worse than this ... Well, I guess there IS worse than this. He's not completely bedridden. He CAN still shower by himself, even though it wears him out. He CAN still walk to the mailbox. Slowly, but he can do it most days. So ... it could be worse. But he's seems to me to be on a pretty slippery slope the last three weeks or so.

But ... we do have some good news! Several points, in fact. First of all, some good friends of our paid the fees for us to get a companion dog for Alex!!! We are all pretty excited. Brendan asks me several times a day, "Can we get it TODAY????" We had planned to go through the program which I mentioned on Saturday, which IS an excellent program! But there is a 1 1/2 to 2 year waiting period, and they choose the more needy kids over the higher functioning one. That's quite understandable! But I don't think Alex would be chosen. And even if he was, this program requires that the child and a parent go down and be a part of the training for two weeks. At this point in the game, that could be a little complicated! It could be done, of course! But ... it'd be tricky. So I got to thinking, "What do we really need?" Well, we need to either get a dog that is certified as a companion dog, so that our landlord will have no choice but to let us have it. Or we need to find one under twenty pounds. Getting a certified dog would be more challenging (and expensive) so we're looking to find something smallish. The thing is ... it needs to be mellow, too. Relatively. I mean, we can't have something like our neighbor's yippy Pomeranian! That would kind of be counterproductive if the goal is to provide a "relaxing canine therapy" for the kids. So I emailed the Humane Society, told them what we are looking for. Also, I am putting the word out to people we know (including you! that is, assuming "you" live in the area!).

Also, the church is sending us gift cards to buy the kids school supplies and school clothes. And they've set us up with a mechanic in the church who is going to tune up our van for free. It's humbling to have to accept this kind of help, and yet ... it's touching, too. It makes me feel like we're really a part of a community, that we have this rather sturdy safety net underneath us, that while we may bounce frighteningly high sometimes, we aren't going to crash into the floor.

No Surgery

Well, the verdict is in. There will be no surgery. The doctor wants to start Mark on a new medication, but it costs $1200.00 per months so we have to go through a process to get Medicare to approve it. It will probably take a couple of months. Also, they're going to put him through a sleep test to see if he has apnea, if that might be causing the severe fatigue. Other than that, Mark's heart seems to be functioning reasonably well, and the doc has seen people with worse hemotocrits and saturations who were functional. But what we see "on paper" doesn't match what we see in Mark. Dr. Broberg said straight out, "We're playing a guessing game with you."

We were in the ER tonight. Mark had a lot of pain: liver area, chest, head, arm ... I think today was just a bit much for him.

Fly Day!

Dad and I went flying with Alex today!! It was SO much fun. Seriously, today was one of those days that's going into my mental scrapbook on the "favorite days" page. The people who run Challenge Air (and the pilots, too) do this totally free of charge for kids with disabilities. It was started many years ago (37 years ago, I think?) by a man who was a pilot in Vietnam. He survived a terrible crash but was wheelchair bound for the rest of his life until he died of cancer ten years ago. But he still lived a full life: flying and skiing and doing any number of things he loved. And he started this program, which his friends carry on. They do it all over the country for the simple purpose of showing kids with challenges that having a disability does not mean that you can't have a fulfilling life. It was really inspiring. The kids there were SO happy. So many gleeful faces ...

In addition to flying (and Alex got to actually "steer" for a bit), they had breakfast food, a pizza lunch, ice cream, soda, cotton candy, snow cones ... firemen who let the kids dress up and spray the hose ... a bouncy slide (Brendan's favorite, by far! He saw one of the boys do flips off the top, so off course he had to try that! Ah, my little dare devil. I heard a rumor that his guardian angel is growing weary and has put in for a transfer ...) No, but seriously ... they had companion dogs, too. For a hundred dollars, we could sign up for a dog that would be specially trained for Alex. Only a hundred bucks! Of course, we'd have to pay $200 for the pet fee here, but the people at the booth said that our landlords can't forbid us from having a companion dog because of Alex's disability. Yey! Not that we have $300 right now to do this, but ... maybe someday soon. (I keep saying that, don't I? One of these days ... Anyway, back to the scene of the action ...)

The plane ride was a thrill! I've been up in jets several times, of course, but never in a small plane like this. There was quite a bit of turbulence, and when we would sort of free fall (very briefly), I would gasp and jump. I think my dad kind of got a kick out of my reaction! (He told Alex later, "You should have seen your mother's face!") I just kept trying to be logical, telling myself how much safer this is than driving through the Curves, for instance. But it sure didn't FEEL safe! I wouldn't trade away the experience, though, that's for sure! What a rush! It was ... just gorgeous up there. We really live in a beautiful part of the country! And it sort of helped me put everything into perspective, to realize (again) how many people there are in the world, many of them with equally great challenges, that I don't (by any stretch of the imagination) have a monopoly of Life's Challenges, that life really IS what we make of it.

For more information on this program, click http://www.challengeair.com/. This program is held in several locations around the country on an ongoing basis. Parents of children with any kind of disability are encouraged to apply at their website.

(Note: To see the pictures in a window of their own, click on the collage.)

Just Waiting

Well, Mark is home. Apparently, we will know on Tuesday at our follow up appointment what they have decided to do. Until then ... we wait! Meanwhile, I'm going with Ruth today to a lavender farm in Silverton. Surprised? Yeah, me neither! But seriously, it'll be good "bonding" time, and who knows? I might get some good pictures out of it!

Success

Well, the cardiac catheterization went well today. They started about 8 a.m. and he didn't reappear until almost 2:00, but it wasn't because anything went wrong. They were just keeping an eye on him. He did have some bleeding from the site when he stood up to use the little boy's room, but his (excellent) nurse quickly got it under control. He was in a lot of pain when he got back to the room--not from the incision, though. From his chest. He couldn't have more morphine yet, but the nurse gave him dilaudid. He soon fell asleep, snoring loudly, but then he'd wake up and crack a joke and promptly fall right back to sleep. At least he's in good spirits! I don't know how much of that is chemically induced! but, hey ... we'll take it! No, but seriously, his joking around is a good sign. He only stops goofing off with people when he is REALLY ill. During past "events," I've felt myself relax when he started joking again because I knew then that he was on the mend.

I've been having some good times with Ruth! I'm actually REALLY surprised. I think ... she actually likes me! I mentioned that to Jason today, and he said (and I paraphrase), "Duh." No, what he said was, "You are your own harshest critic." I guess maybe, after all the "work" I've done with Dr. Warren, that I am finally able to recognize love and admiration?? I don't know. This feels SO different from past times with her that I'm tempted to think she has changed. But chances are ... I'm the one who has changed.

She just about blew me out of the water yesterday. She told me that she has to keep working until November, when her full retirement kicks in, but then she wants to move back here to be near her son and her grandkids and to help out with them. I could have cried! But, being a dignified woman (Hah!), I didn't. I just said, "That would be really great!"

If she does move back here, though, I'm going to have to learn to enjoy conversations about lavender and cooking and lavender and decorating and lavender and ... did I mention lavender?? I like to have conversations about books, about politics, about sticky issues of faith and religion, things like that. Ruth would really rather not talk about politics or the news. While I have no doubt that her faith is completely genuine, she doesn't seem to wrestle around with tough issues. It just ... is. And we're not interested in the same kinds of books. And as far as cooking goes, if I could somehow avoid having to do it ever again, I'd be a happy camper. She does it for FUN! And the whole lavender obsession ... I mean, I like the stuff. I do. But this woman is completely head over heels in love with the stuff!! She grows several varieties, reads about it, cooks with it, visits lavender festivals, talks about it, talks about it, and ... talks about it. But, you know? I realized this week that she really loves her son and her grandkids (and maybe even me?!?), and ultimately that's all that really matters. And who knows? If she moves this way, maybe she'll teach me to make her scrumptious lavender cake. . .

We Just Do

There are nights I just don't want to go to bed. It's not that I'm not tired, because I am ... It's just that I feel hypervigilant, like I can never quite let down my guard or I will get swamped with all of this. I do sometimes. (Let down my guard, I mean.) I can't seem to help it. And then ... wham! It's not a good idea, I've discovered (repeatedly), to let your guard down too, too much.

I wonder what it would be like to feel safe in the world? I don't know that I've ever really felt that. I don't always (or even often) feel physically unsafe. Living out in Poedunkville, I'm far more likely to get sprayed by a skunk then to be the victim of a crime, so it's not that kind of feeling unsafe. It's just that feeling of ... precariousness, of everything being transient.

I sleep in my clothes sometimes these days. I don't know why. I just feel ... ready? Ready for what? Just ... ready. But I'm drooping. I can't stay awake much longer. I've calmed by mind with classical music and Sudoku, and there is a huge part of me that just wants to give in to sleep. But on the other side of sleep is another day. And when I get to that day, I know I will have the strength for it. It just seems like more than I can conjure up right now.

I have a dear friend who also lives a challenging life. I asked him the other day, "How do we keep on?" He said simply, "We just do." It wasn't said flippantly. It's just ... that's the truth. Plain and simple. We just do. So I think I'll take off my headphones and dry my tears and go get some sleep. Tomorrow's a new day.