Merry New Year!

The title is Eddie Murphy in Trading Placesbut I'm also reminded of the New Year's episode(s) of M*A*S*H, where Colonel Potter said,"Here's to the New Year. May she be a damned sight better than the old one and may we all be home before she's over." it hasn't quite been a Police Action, and I'm very glad to already be home, but the rest of the sentiment holds true, even without the indelible image of Jamie Farr in a Baby New Year diaper. Really, in spite of the last six months, and in part because of them, 2010 wasn't so bad. I started and continued the year feeling very appreciated at work (what with winning a few collaboration awards and the honor of attending the annual recognition conference at Disney World) And I've wrapped it up continuing to feel very fortunate (have I still not written my Thanksgiving entry other than in my head?

My toast for you all is the title of my best -selling self-help book: The Other Secret- Get Everything You Want by Wanting What You Already Have. Some might Call it "settling" or downright laziness,, but I'm just saying cherish everything you have. The only thing certain in this life is that nothing is certain; even death and taxes, which are being pitted against each other somewhere in a government lab

So merry new year to us all!

healthy delusions

I have been, over the last few weeks, thinking about how I am handling all this. I know it sounds odd, but it’s hard when you’re in the middle of it to see how it’s changing you. I know this will change me. It’ll change me as wife, mother, daughter, and human. I am watching myself, but as I said it’s hard to get a good view from inside the storm. I am trying to make sure I don’t become bitter. Angry, at times, is okay-even useful. Afraid is understandable-at times. But bitter is nothing. It’s lazy and ugly and the opposite of love. Or the absence. And maybe the absence is worse.
I have decided that what might help is gaining some of my healthy delusions back. I want to believe that the “what if” will not happen to me. I need to. I need to feel safe again.
Ken and I used to have this game (I think I started it) called “Not Allowed”. The game consisted of us watching TV (ER or something) and the storyline would involve a heart attack or cancer, or car crash etc., and one of us would say to the other, “Not Allowed”. It was a joke. But, at least for me, it was also a bit of a prayer. I took it a little bit seriously. It was my small way of telling the universe, “hey, I know what you can do, I know what to fear, don’t send it to me or the ones I love”. I did this for years. I did this after my sister died, after my other sister nearly died, after Gus nearly died. I haven’t done it since Ken. I have lost my ability to live in delusion.
It’s a bit like PTSD, there are varying symptoms, one of them is the triggering effect of noises. You’ve all heard the stories of the war veterans who jump and cover at the sound of a car backfiring because it brings them back to the moment of combat. But what if the re-occurring event is not war, or personal violence. What if the re-occurring event is watching the people you love almost die? I really am wondering about that. How has it changed me? Does it matter? Am I, without knowing it, shoving myself under something for protection? Figuratively speaking, of course.
Anyway . . . I’ve been reading this wonderful book about prayer. Not that I am becoming a religious person, but I am trying to become a calmer, more self-aware person. A person who is guided by love. I think prayer, for me, is more of a reminder of who I want to be. I want to be more aware of love. Not in the hokey sentimental way that we often see it. But in the way it has been shown to me over the last few months, a useful and tangible structure to hold onto. Because I think that will save me from the bitterness. My husband, and my kids will do that, too. But I have to find it in me. I know, and I have seen that we can surprise ourselves with who we become, good and bad. I am trying to ensure that whatever happens, however I am changed I have something to say about it. And maybe in that way I can get some of my healthy delusions back. I can start to feel safe again.

Growing Pains

Yes, we had a wonderful Christmas. Wyatt got everything on his official list (a remotecontrol Polar Express. Plus quite a bit from his unofficial list (Wii). i certainly got everything I wanted - to be home. And Wii Bowling is good balance practice.

We've had our moments of frustration and panic, but i think we're starting to hit our stride. Thanks to Jamie's mom and boyfriend, the mrs. and I had a bonafide date night- went to see How Do You Know and then shared a good salad and eggplant parm at Ricetta's. We both enjoyed the movie more than Roger Ebert said we would. we needed light , and it was quite airy. So that bookended the day well, since I'd started out with my first fall. I just made a misstep backing away from the bathroom sink and proceeded to sit down hard, in slow motion. Fortunately, I didn't hit my head, but I did manage to land on the side of the toilet. I don't plan on doing it again,and Jamie's sticking to me like glue (even more than usual). I'm still a little sore on the left side of my chest - maybe a good reminder not to try anything fancy.

Our other little panic came Christmas morning when I awoke to discover some "new" swelling below one of my incisions. We quickly left a message at my surgeon's office and he quickly called us back (did I mention it was Christmas morning? -hes a good guy - with some reassuring information - it's apparently not unusual for swelling to continue for a few weeks after surgery. And Monday made three weeks since my cranioplasty. Since then, the inflammation has gone down by evening but returned while I sleep.

On the whole it has been wonderful being home, but I quickly realized how much I had not missed the whining, screaming, and pleading.yes, from my beautiful children but also from me. I didn't miss hearing that particular tone in my voice either. At-home physical and occupational therapy also started yesterday and should continue every day for the next couple of weeks. It's good to be working toward practical, tangible goals, like for me to move around the first floor of the house and be able to help Jamie and the kids more and then for me to take my show up the stairs.
The struggles have been along the lines of what we expected- I feel a little trapped and don't want to burden Jamie with one more voice asking her to do something. But that's the reality. There's still a lot that i just can't safely do by and for myself. It's not a pleasant reality but it's what we've got for now.

hippopotamusses 2

http://www.youtube.com/watch?v=e7xjjlUbpJ4

This link is for all those who did not get the above title reference.

hippopotamusses

MERRY CHRISTMAS ALL YOU WONDERFUL WHO'S!!!!!!

tender

Here I am sitting, listening, looking at my sons and husband. Such an every day thing, one would think. But it hasn't happened in a long time. At least not without knowing it would have to end. Now we have him with us again and all I can feel is tender. I look at him and am just so full of grace, and peace, and right-ness. He makes comments every once in a while about how he looks. His scar and his (slightly) droopy eye. I can honestly say that he has never looked more wonderful to me. The scar on his head is the symbol of the grace I am feeling. It is a reminder of how close we came to not having him here, explaining a lunar eclipse to Wyatt and talking to Gus about when he can watch TV. I love that fucking scar. I love his droopy eye (slightly droopy). I don't quite love his left side not working, but I love the progress he is making. The fight he is showing, the patience and the kindness he is giving his left side. It reminds me of how he is with the kids.

He's been walking with his cane, and making Spaghettios, and i-touching. I made meatloaf, one of his favorites. There's been a lot of laughing so far. Good first day home.

In Search of the New Normal

Before my first surgery, I went to see a counselor (who  I referred to as "my other head doctor,")  to help me deal with all the challenges ahead of me. Hewould talk about  the frustration of waiting for the "new normal".
In retrospect, those were relatively simple, innocent times, when the fear of death and/or a stroke were abstract.

Well, on Saturday, I got a day pass from the rehab and had a chance to take the new normal out for a spin.
That meant the opportunity to try out the wheel chair ramp we had built in our garage (running into our family room), as well as the grab bars in the downstairs bathroom, and the hospital bed now in the office.

I'll be living on the ground floor when I first get home()officiall(scheduled for this Tuesday)but hope to be able to manage the stairs wiyhin the next month(with the the help of at-home and out patient therapy.

A lot of figuring out the new normal has to do with reconciling old roles and routines with new limitations. The Father in me wants to be able to play with my sons, help get them  ready in the morning, and put them to bed at night -- to be a parent again. I've been away for a long time and can't help feeling like I need to make up for lost time.Wyatt very sweetly said to me,"I wish this hadn't happened to you." Ditto. And I wish this hadn't happe3ned to him.

Late last week  I practiced getting up off the floor. In principle it's in. case I fall,but I'm thinking about it more in terms of being able to get on the floor and play.

I want to be able to do that as Husband too. I'd never have made it through all  this without Jamie by my side, and I want my return home to be more help than burden. But Jamie and I both have another struggle before us - hers is to help me without overdoing for me; mine is to ask for help when I truly need it but not to let her coddle me. I also need to challenge myself safely and without scaring her half to death, like on Saturday when she turned around to see me standing at the pantry door, looking for chocolate chips (for the cookies the boys and I were making). I should get some level of permission to do things like that at the rehab tomorrow, but we're going to need to make our own rules at home.

Needless to say, it was a successful visit - bet tween the aforementioned cookies, reading a dinosaur book, building Santa's village out of blocks, and decorating the Christmas tree.It was a good test of what I can accomplish sitting down, and further encouragement to get back on my feet.

Then Jamie's sister came over to watch the kids (Thanks, Jen!), and Jamie and I went out to dinner. That was another first - the  first time I'd gone out in public in my wheel chair. It was fine, butI know I'm going to be self-conscious about it whenever we do it. I kept thinking people were saluting me. What with my newly shaved head and sutured scalp, I do look like I've been in battle. But I don't deserve that level of tribute or attention.

Gluttony of Christmas Cheer

So, we got a Christmas tree, went to a party, saw Santa, sang carols, got presents, at cookies. Now I am tired. Holly jolly tuckered out.

Ken may be home on Tuesday. Home for Christmas. Wow. So happy and nervous. Mostly happy. I'd say a 90% to 10% ratio. Don't know what Ken'd say his ratio is, but probably something similar. Reminds me of when we first moved in together, that mixture. It worked out the first time, and now I know he snores, so no surprises.

Crocodilles and naps

Ken and I spent a semi quiet day today. We did a little PT and OT together, then we talked and watched TV. Ken napped as I watched a show about a gator park in Louisiana (or somewhere). There was a very tough chick on the show who caught an alligator during "Gatorfest". I probably would have tried it when I was young, but now it just makes my neck hurt.

I was talking to Dr. Kazmi, the doc in charge of Ken's case, and told him he was in the blog. That I'd talked him up. But then I was reading through and realized that though I have talked him up, I hadn't written him up. So, here goes. He is great. The first day we were here was horrible. I felt lonely and desolate and hopeless. Then Dr. Kazmi came in, and literally (not figuratively) I felt better. He has this calm, gentle energy and the most kind eyes. Plus he knows his stuff. And the staff has only good things to say about him. We are very lucky. We work with a wonderful, caring, knowledgeable group of people.

Oh, and guess who sent Ken a poster? C'mon guess. Okay I'll tell you. You remember Scott Pilgrim don't you? Well, the actress that plays his older sister Anna Kendricks, and the director Edgar Wright sent him one. YES THEY DID! Isn't that cool? Now, after I'd tried to figure out who'd play me in the movie I remembered that her mom works at Ken's company and it wasn't just happenstance. So, I guess Diane Keaton won't be saying the famous line, "here, honey, I've brought you some prunes". And George Clooney won't be saying "I have to be here, this is where my ass is". I know, I know the age difference. I just love Diane Keaton. So, anyway, if Anna or Edgar are reading this, THANK YOU. It was very kind and thoughtful of you, and there was definitely a lopsided grin when he got it. It made his day/week/month/etc. The poster's hanging prominently (though crookedly-I am so bad at hanging things) on the wall of his room.

Oh, and I can't remember if Ken wrote this in his blog post, but his room and phone are the same. Come visit and see his round head.

Checked in

There are so many ways for me to keep in touch that I'm now finding it hard to communicate. Here I thought that "Checking in" to the rehab in Portland, on Facebook, would cover me. But I still needed to keep up with email, Tweets, and texts. And, admittedly, the short messaging technologies are more easily managed from my iTouch than the blog is (though I am using the Blog Booster app right now), but too many lines of communication do somewhat defeat the intention of the blog. Not that I can possibly complain about having too many varied communities in my support system. But that's a matter for my long-overdue Thanksgiving post.

So let it just be known that I did get released from MGH on Friday (just gotta keep my head clean and intact)and am now comfortably tucked back into my bed (117B) at the New England Rehabilitation Hospital. It's been really nice seeing friendly, familiar faces and not have them recoil at the sight of my newly-refreshed head wounds. I've had many more nice comments about the shape of my head than disgusted ones about my incisions or my uneven haircut (something definitely needs to be done about the latter - I neglected to tell the surgical team to just shave my entire head, nor did i put those instructions in my Living Will/skull birthing plan).

Jamie was able to bring the boys in today, which was a wonderful reminder of why I'm back here - there's still work to be done so I can get back home. With a little determination and a lot of support(literally) from my great therapists here, hopefully , that will happen by Christmas.

discharge

Could be tomorrow. If so we'll be back to the rehab. If not, I'll be coming home on the bus. Can't have the boys waiting any longer. It feels as though I am always missing someone. But I am assured by the boys that I am allowed to hug and kiss them for hours. Lucky me.

Radical Acceptance

Radical acceptance is the term the therapist at the rehab has spoken to Ken about. You don't have to like the circumstances, but try to accept them. We try.

There has been another bump in the road, or I should say a potential bump. His doctor came in today to let us know that the tissue (skin) they sewed together at the top of his head is fragile and could get infected. They have to monitor it carefully. If it does get infected there will be another operation and they will have to take out the plastic skull. Suffice to say it would be a bump we don't need.

Ken said something tonight that I have to quote (warning: swearing ahead), "I have to be here, this is where my ass is". I will spare to the context from which this quote was inspired. But I think it sums up the radical acceptance thing quite well.

I hate this situation. I hate that I can't protect him from all this. That when the doctor was talking all I could do was look at how tired and battered (and beautiful) he was and I couldn't make it be different. But I have to accept that I can't. Because if I don't then I can't help him move forward. But I will never, ever like it.

twin peaks

Ken is doing well. Still tired and groggy. But his G-tube is out. YAY! And the catheter. YAY! I am hoping that we'll get the okay for discharge soon, maybe by Thursday. Then onto rehab.

His roommate is very creepy. He reminds me a bit of Bob from Twin Peaks. I know that all of you who watched that show are now very creeped out. And with that, goodnight. Sweet dreams.

everything is stable

Ken came down from recovery. He was alert-ish, though groggy. He ate and drank a bit. He was talking and doing all the things they wanted him to do. He also got some heavy duty meds for pain.

More tomorrow. Sorry so little today. Tried to send a couple of blogs that didn't go through.

Good

He's out of surgery. Went well. Haven't seen him, apparently his head is very softly and fluffily wrapped. More after I've seen my boy.

technical difficulties

Sorry, we've been having some problems with connecting to the internet. He's in surgery now. Should be about  2-3 hours.

We've had a long day. They announced early this morning that he should've had a stress test for his heart before he got here. REALLY? We asked about it prior to coming. THEN they let us know how dangerous it could be to go forward if he didn't have it done. THEN a resident came in later to tell us we were going forward with out it. I then said, "did the cardiologist okay this?" To which they replied something about the cardiologists no longer being involved. I then asked if they were n
no longer involved because they had okayed the surgery. Apparently not, but the anesthesiologist had. Ummmmm, ehhhhhh, ohhhhhhhh. The cardiologist is the one who felt there was a danger. So, I said something to the effect that they can't scare the shit out of people and then poof the danger away. Long story short he got the stress test, and it was fine. Now he's in surgery. We wait. And wait.

more later.

Blah

Nice view from his room.

Holding Pattern

This is Ken. No way to say if it's fortu nate or unfortunate, but my surgery's on hold for at least a few hours.Some questions came up about whether I should have more cardiac tesing beforehand, given the fact that I had a heart attack in September. There was always a plan for me to see a cardiologist for a chemical stress test, but it's frustating that it's come down to the wire for the doctors to raise questions of timing on that. I'mhoping to make it through the day no worse for the wear, though it feels odd to wish for the status quo when my quo isn't all that palitable.

My hands smell like hospital

So, we are back at MGH. I hate the smell. It enters my nose and I feel it in my stomach. I think if someone were to give me a smell test of this place v. another hospital I'd know it. Could probably tell them the floor.

I walked in and almost couldn't control my urge to run back out again. I can only imagine what it was like for Michael and Sara. And, of course, Ken. He is scared, and anxious. I think more so than before the first surgery, when he thought things might go wrong. Now he knows. Yet he has to come back to the place where it all happened. It is torture. A form of torture where they serve you food and drugs to make it feel less like torture

The surgery to give him back his skull (or a prosthetic imitation) is tomorrow at 10 or 11 am. I know I sent a blog out about it before. But here's a gentle reminder, SEND GOOD THOUGHTS! Prayers! Chants! Songs! Send love. I know that you all will. But I needed to say it.