Friday, December 31, 2010

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! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, December 30, 2010

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.

Wednesday, December 29, 2010

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.

Monday, December 27, 2010

hippopotamusses 2

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

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

Saturday, December 25, 2010

Tuesday, December 21, 2010

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.

Sunday, December 19, 2010

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.

Thursday, December 16, 2010

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.

Sunday, December 12, 2010

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. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, December 09, 2010

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.

Wednesday, December 08, 2010

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.

Tuesday, December 07, 2010

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.

Monday, December 06, 2010

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.

Sunday, December 05, 2010

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.

Monday, November 29, 2010

visitn'

I won't be able to be with Ken as much this week. So, f anyone could take some time to go see him or call it would be muchly appreciated. I probably won't see him at all Thursday, though he will have visitors late that afternoon.

Be well, everyone!

Sunday, November 28, 2010

Thanksgiving

This post is a bit late. It's been a busy couple of days. Ken was home for Thanksgiving and yesterday. His sister Lisa, brother-in-law Mark, niece Emily and nephew Daniel were here. His mom and dad, my dad and sister (and my dad's dog) were all here. It was great, but hectic. Lisa's family took Wyatt (Gus was getting over a stomach flu) bowling (candlepin and regular!), to a game room and to Friendly's. He is still talking about it.

On to thankfulness. I hope that I have made it very clear in my previous posts how much your support has meant to us, and me. I am generally a relatively private person, I don't have a huge circle of friends, and my life is pretty quiet. I told Ken I was only going to do the blog if I had to.

Then everything fell apart and I had this instant lifeline. And the lifeline had me. Not only was I being taken care of by my family (in this I include Ken's), and friends, but I was also being boosted up by people I didn't know, hadn't met.

I thought I would be really uncomfortable with a lot of people knowing my business. I didn't want to feel like someone's tragic reality show fix. And I think there is a bit of that in this. Not in a morbid way. I think we are all, understandably, fascinated by other peoples' lives, joys and tragedies. Seeing something like this happen to someone else helps us to think about it, how we would react, what we would do. Live through it at a safe distance. And, hopefully, reminds us to appreciate all the days we live without something like this in our lives.

So, in conclusion, to put it succinctly, I am thankful that I was made to feel less alone. Because believe me, when I could finally breathe, or do anything besides be stunned, I knew you all were there. And so did Ken.

To put it even more succinctly, in fact in list form, here are the things I am thankful for:

phone calls, comments on the blog, e-mails, cards, gifts, love, prayers, raking, food, babysitting, visits, pictures, rides to and from the bus station, housecleaning, pumpkins (FYI-smashing them? against a tree? great way to get out frustration, anger etc. you know, if you have any in your life.), offers of these things and more, Kenapallooza (more on that later), and all the things I am forgetting.

I think that's it for me. It seems so little. Ken has said he'd like to do a blog about this as well, but just in case he doesn't (he is kind of busy), I think I am safe in saying . . . him, too.

Tuesday, November 23, 2010

up and down

This week started out . . . well, as Chrisanna (OT) put it, "the word of the day yesterday was melancholy". Yesterday was a pretty hard day emotionally. Ken was feeling sad, and frustrated. I was feeling the same. Both wanting to make it better for the other person, wanting to come out of the hole. Ken said something like, "I am ready for the magic pill now". Me, too.

Then today I saw him walk with a cane. I'd seen it before, but this time he had very little help. I yelped. Ken asked if I was going to do that every time he took a step. I think I did. Then Joanie Showed me how to help him, it was wonderful. I could feel him adjusting his weight, and correcting himself. The he and Joanie tried the stairs. He did wonderfully. Up on side, down the other. Several times. It was what we needed.

Oh, and, apparently there is some sort of bacteria growing on his skull so they can't use it and are putting in a plastic prosthetic instead. Yup. He's getting a CAT scan and they are getting measurements from that and will, using those measurements, be able to mold the plastic for his skull piece. Now, you know you've been through a lot when the thought of plastic instead of skull in your husband's head doesn't really phase you. But I do have to ask, did they put it in tupperware, or ziploc? A gum wrapper? I mean this is a world renown hospital. I guess we're doing better than the woman who's skull got thrown out when she had her craniotomy in Mexico. Yup, again.

Saturday, November 20, 2010

UNUMANS

OUR LEAVES ARE RAKED! OUR LEAVES ARE RAKED! A bunch (a big bunch) of Ken's friends from UNUM came and cleared our yard of leaves. Even the driveway circle. It is gorgeous, fabulous and green (ish) now. Thank you! Thank you! Thank you! Ken and I are both moved and overwhelmed by the love and support of all of you.
Not to mention the Tony's donuts.

Then we had a very emotional good-bye. Everyone (except Gus) crying. Ken could barely talk. He just kept holding Wyatt and kissing him. I held them both. Home soon, please.

Friday, November 19, 2010

Raking

Those amazing Unumans are coming over tomorrow to rake the yard. A not un-daunting task. Ken is coming home for a visit. It should be fun. He will look down from his Evita perch (I was going to do Juliet, but Evita just felt more right somehow) and sing of injustice and raking.

He's been doing really well. Walking with assistance (a 4 footed cane and an OT or PT). Moving his leg, arm, and squeezing fingers. I've been catching up, occasionally, on Dog Whisperer. Which has been giving me some great parenting tips. Stay calm, give affection, maintain dominance, and exercise them frequently.

Thanksgiving is coming, we we're gearing up for that. Then the skull replacement after that. It's going to be busy couple of weeks.

Thanks for the visits. He really looks forward to them.

Wednesday, November 17, 2010

Singin' in the Rain

Sent Wyatt of to school with a little soft shoe in the rain. Went to PT to witness Ken walking, holding the hallway handrail and with a lot of assistance from Shelley (PT), but he was doing it. The some wheelchair slaloming, which was funny. I felt so bad for him, as he is not the best at spacial stuff and she had him weaving through these little cones on the floor while looking up to find and identify letters. Did great with the letters, but a couple of those cones got clobbered, though not many.
Tess brought Thai food. Julie brought Helen (her daughter) to visit. Then Sara and Michael brought just Wyatt for a visit. Wyatt loved it. He got some one on one time with Dada and helped Chrisanna (OT) do her therapy with him. W was so excited he told me about it again at bed time. I was telling Wyatt how Dada sounds a little different now and moves a little less, trying to coax him into a conversation about how he was feeling about all this. Wyatt interrupted me and said, patronizingly I might add, "Mama, we love the people in our family. Dada is Dada. I love him all the time".
Simple, no?

Monday, November 15, 2010

Sunday, November 14, 2010

Ramps, pizza and small bathrooms

Visit accomplished. Got him into the car without a hitch. Was having trouble getting the wheelchair into the car when (and I am not joking) a cowboy came by and folded it up and put it in the trunk for me. He even TIPPED HIS HAT! We drove home, with Ken feeling a bit carsick. He's been complaining a bit of some dizziness when he rolls over in bed, we think it's because that bit of skull is missing. It's messing with his equilibrium a bit. But we successfully got him home. Thankfully it was a nice day because we had the windows rolled all the way down to get some fresh air.

We drove into the driveway and there were Jamie and Stephanie (friends from Boston), Michael and Sara, and the kids. We got him out of the car easily. Getting him into the house was a bit harder, but fine. Ken's Aunt Ellen and Uncle Frank had a temporary ramp they loaned us (thank you!). There would have been a lot of jostling without it. We sat outside and had lunch. Ken wearing his helmet, yellow lensed aviator sunglasses (given to him at the disco party by Shane) and a baseball hat (given to him by Jamie for his B-day) that says "old as dirt". Mostly we just chatted and enjoyed it. But, boy, we have a lot of thresholds in our house and our downstairs bath suddenly gets exponentially smaller when you put a wheelchair in it. Hopefully he won't need the wheelchair in the house when he comes home.

Ken and I talked in the car on the way home. We were both feeling the same. A bit of, as Ken put it, ennui. It was very hard to bring him back. Very hard.

The thought as far as discharge is that the operation for his skull will be on 12/6, and he'll be at MGH for 3-4 days. He may go back to rehab if they feel he needs it. I guess anesthesia etc., could make him lose some ground, but my impression is that it would only be for a short stay to, as they say, get a "tune up".

All I want for Christmas . . .

Friday, November 12, 2010

Home Again, Home Again (for a day)

Ken earned himself a day pass. He's coming home tomorrow for most of the day. We are all very excited.

Had a Team Meeting today with Dr. Kazmi (head of physical medicine), Holly (casemanager), Mallory (speech), and Joni (PT), his OT was off. I am glad he is working with all of them. They all seem very invested and good at their jobs. Everyone had great things to say about his progress. They are very pleased.

We even got a date for his skull to be put back in, December 6th. Ken and I are both having some intense anxiety about that, or at least anticipating anxiously that we will have anxiety about it. It is a relatively easy procedure, they say. I giggle anxiously as they say it. It means going back to MGH, can anybody say PTSD? I can, it's Massachusetts General Hospital.

Love to you all!

Tuesday, November 09, 2010

He moved his leg, but he didn't know it

So, there we were, Ken, his OT, and I. He had just gotten into bed and was trying to get comfortable. I was looking down at his legs, trying not to help him. Then I saw his leg move. Not a tiny little move. An outward push on top of the bed. He moved it about a foot. I looked at his leg and honestly thought, "is that his weak leg? that can't be his weak leg.". I looked up at his OT. She was looking at the leg in the exact same way. I said, "did you see that?". She said she had. Ken was blabbing on about something and I kept telling him to be quiet so we could process this. Because he hadn't even noticed. Just like it would normally be. When I could finally get him to listen to what he'd done, he just gave me a shy grin. A shy, lopsided grin.

Then his head doctor came in and he did this great kick, from his knee. It was a good day. AND this was at the end of the day when he was tired. yeah.

Monday, November 08, 2010

Short Visit

Due to a hectic day: got mom to the airport, Wyatt's school got canceled, my visit with Ken was short. The boys are still BIG fans of the movable bed. Really, really, big fans. They ate lunch in Ken's room and got to meet Chrissanna, his lovely (I swear she looks just like Amanda Peet http://www.imdb.com/name/nm0001605/), and good at what she does OT. Wyatt even talked to her without doing it from behind my knees. Ken seemed to be having a very sleepy day. And threw up in the morning, but felt better during the day. His blood pressure's been low so they are going to put him on IV fluids. Don't know why they can't just remind him to drink or have me/those with him remind him to. Anyway, onward and upward.

Saturday, November 06, 2010

Today was Saturday

Ken's brother Jeff, wife Beth, and two ridiculously gorgeous and charming daughters Griffen and Samantha, came up this long weekend. Wyatt and Samantha were joined at the hip as were Griffen and Gus. Quite cute as always. They boys had a blast with them, and are incredibly happy and tired. And sad to see them go, as am I. As is Ken.

Ken had a good last couple of days. He was able to push his left leg enough to move the pedal of his therapy bike. His balance his getting better. His smile is still lopsided, but I like it. He is still amazing me with how he is coping with this.

The boys came to visit, a bit longer this time. They finally discovered they could move the bed. Instantly obsessed. But they also got some cuddle time with Dada, and got to talk and ask him questions. Which is great, but hard for Ken. He said that having Wyatt ask him makes his situation that much more real. Despite that Ken answered the questions, didn't deflect or distract. Good father and smart. He is currently watching a curious amount of HGTV.

Thursday, November 04, 2010

The Moon Walk Was Rescheduled

Tomorrow is the autoambulator. Today he pulled my hand to him. Strong like bull. I was doing some range of motion and wasn't paying much attention, was looking at the TV. Suddenly he pulled my hand into his chest. I turned to look at him and he said, with a sheepish grin, "did you feel that?". Yes. I. Did.

We spoke to his head doctor Dr. Kazmi who said we could start working toward passes to leave the rehab. We are hoping that means even if he's not home for Thanksgiving. he'll be home for the day.

Thank you to everyone for sending the cards and gift baskets, and toys, and food, and and and . . . I am, under good circumstances, a HORRIBLE thank you card sender, so I am even more horrible now. But I wanted you all to know we are getting them and appreciating them. And the ones that aren't perishable are on his wall. Oh, and the whoopie cushions are a new favorite for the boys.

Wednesday, November 03, 2010

Another Day in the Life of K to the E to the N.

It was another day. PT, OT and Speech. All good. Ken moved his whole arm with his shoulder. The OT showed me how to hold his arm to support his joints as he moved it and said we had to fight gravity for him. And suddenly I had this glorious picture of Ken bouncing around on the moon, waving and jumping. In his Superman underwear. And his red slipper socks.
I will quote him today. Today he said he was, "hopeful". I am hopeful, too. I am hopeful and grateful and determined. We are all clumsy. We are all destined to fall, have scars, be bruised. Nobody gets through life unscathed. So, I am scathed. I am scatheful, but I am less scathed than some. I still have my husband, my sons still have a father. Scathes be damned. I will cry while listening to dumb love ballads, I will be angry, but I will also remember the house full of people I just had come over to help clean my house. People who love Ken. It is all very heartening and humbling. Hopeful. I will follow his lead.
Tomorrow I'll see him on the autoambulator. But I will imagine him on the moon.

Tuesday, November 02, 2010

Salty Potatoes and a Shrug

I wasn't able to be there much today. But we were able to take a bit of a walk outside and do some range of motion work. Ken loves that. I make him walk in bed. He moves his right leg and I move his left, then we march. It's all very silly looking, but it makes me feel like I am helping him heal a bit. We both had a bit of a moment while doing it. Him saying he thinks I don't think he's trying hard enough (not true), me saying that I think if he doesn't get better it's because I didn't do enough. We talked and cried a bit, then watched Oprah interview Ricky Martin. They were both very earnest.
We had our first parent teacher conference with Wyatt's teacher (LOVE HER) who basically said he was doing great. She said he's very compassionate and caring, that he advocates for his classmate Adam who has some learning disabilities. Academically he's just where he should be. We tried to speaker phone with Ken but got cut off. I told him all about it later. We are very proud.

Reautoambulated

I wasautoabulated again this morning , with lots more padding(thank god)n BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Monday, November 01, 2010

wrong number

I think I gave out the wrong number for Ken's room, it's 662-8571. The general number is 662-8000.

Ken had a good day. I am learning to transfer him from his wheelchair to bed and vice verse by myself. It was a bit tense at first, but as he gets stronger it gets easier. He's been using the Bioness (http://www.bioness.com/Home.php) for his hand in OT, and he got a shower and did it mostly himself. PT was mostly the parallel bars and practice sitting up straight and finding his balance. His face is definitely moving more symmetrically now. He's still got a lopsided smile, but it's less lopsided.

He got a few visits today from his friends at UNUM. It's been fun meeting the people I've heard so much about. Though still hard to get the right name to the right face. There are just so many of them. The visits definitely keep up his spirits.

More tomorrow . . .

Sunday, October 31, 2010

The Reasons

There are many reasons why I like and love my husband. You know, things like his kindness, his sense of integrity, his beautiful writing voice, his amazing ability to find just the right present. But at the tippity top of that list is this story. We (we being Wyatt, Gus, myself and our wonderful friends Jack and Erica and their wonderful kids Dakota, Aino and Ora) walked in this afternoon to see Ken before Trick or Treating to show him the kids' costumes. He was there in his Superman Shirt. And then, my dear friends, went on for the slow reveal of his Superman, oh yes, uh-huh, say it with me . . . UNDERWEAR, in all their gorgeous primary colorness. There they were, a snug fit over his pj pants.

Now I love this on many levels. I love the fact that our superfriend Jamie thought to buy and send them to him. I love that Ken had it in his head to do it. I love the idea of him planning it, imagining the reaction, snickering to himself. And I love that, even though he had to ask someone to help him do get them on, he did. Just for a laugh. Over his pants. It was . . . well, it was Ken. Our friend Jack walked out and said, "Oh, yeah, he'll bounce back. He's awesome". And he is. He is soooooo awesome.

Friday, October 29, 2010

auto ambulator

Kinda sounds like what it is. Ken was put in a machine that basically made him walk. He said it was pretty uncomfortable, but it was nice to see himself walk. He's been approved for all foods. Oh, and his room has changed, he's now in room 117 and his number is 662-8177. He's been craving this weird Friendly's burger surrounded by two grilled cheese sandwiches. Before you all go out to bring him one, please don't. After all, he did just have a heart attack.

I am sitting with him in his room. I like to just look at him.

We are sitting watching TV. Though not House, or Grey's Anatomy, or Discovery Health, or, well, you get the picture.

G'night. Squeeze the ones you love. Then kiss them, and then squeeze them. Just to the point where they are almost annoyed. That's what I do to Ken.

Go Fly a kite

A couple of days ago, my friend Tess called to recount a cute story about her son and, unintentionally, planted the seed of a metaphor -- am I like a kite stuck in a tree? If so, am I waiting for someone with a ladder to happen by? Or a strong gust of wind? Actually, I think I need the tree to grow some  new branches. Though I wouldn't turn down a stiff breeze that would carry me away.Without the stuck part, it's really an uplifting symbol (pun intended).

Wednesday, October 27, 2010

The Smell of clean

Ahhhh, a shower. Poor man hasn't had a full on shower in a month. Today was the day. The lovely PT Chrissanna and I got him showered and shined. Soap and shampoo from home, so he smells more like himself. He said he felt much better. Had a great day in PT. He was up on the parallel bars and was able to move forward a bit. His balance and sense of his body seem much better.

His speech therapist Mallory told Ken that she was really impressed with his sense of self. Many people who've had strokes in the area he did lose there sense of who they are, and kind of drift. Ken is very much himself. Very able to communicate and be present.

We ate lunch together today in his room and were able to talk. It was nice. We talked about the stroke and how he's feeling, but we also just . . . talked. By the way he is feeling good. I think he's pretty pleased with his progress. Wants it to be faster, but sees it's there. I was telling Mallory how impressed I was with how Ken is dealing with this. My reaction would be somewhere between weeping in fetal position and catatonia, or a mixture of the two. She said it was great to work with someone who could keep his sense of humor in such a situation. Ken said he had to keep going, getting better for the boys. It is big, his love for them.

We're going to be visiting him on Halloween, before trick or treating. Gus is going as a skunk, Wyatt is going as Clark Kent turning into Superman. His grandma even got him glasses. Pretty darn cute.

Monday, October 25, 2010

toast

They have upgraded Ken to eating toast! He had a good, though tiring day. Lots of visits from his friends at UNUM. Lots of therapies. He's been doing some electric stim on his hand and leg. You can't see much on his leg, but his hand rears up like a fighting tarantula. It's pretty great to see. Damn he's wonderful. Sorry so short, kinda tired.

Guffaw

I meant to blog this yesterday. I was sitting at the computer, coffee in hand, when I read ken's post about John Denver. I let out a very loud guffaw and did spit take, luckily avoiding the computer. Now, there are things about my life I'd change. But having my cyber geek be able to make me laugh first thing in the morning from miles away? That was all blue sky.

Sunday, October 24, 2010

I miss my old life

Last night Wyatt, our oldest, asked if I was staying home today. I told him, no, that I needed to be with Dada for some of the day. He began to cry and said, "I miss my old life". Not an easy thing to hear your five year old say. Especially when it's not in the middle of a tantrum about toys, TV, or playing another round of the same game you've just played for the 18,000th time. It was real in a way that I couldn't change, or make better, or even explain to him. We spent the morning at the beach yesterday. Went out for breakfast, then walking on the beach. We met a colossal yellow lab named Ringo, who taught them a brand new way of digging sand involving what amounts to a sandstorm and getting out of the way. It was wonderful, and exactly what we needed. I miss them. But I was reminded of the summer walking along the same beach with Ken. We knew this was happening by then. I took pictures of them on the rocks, had my sister take pictures of us all. Just in case.
It's a hard place to be. Knowing that I have to believe that he is going to be walking on that beach again. And, for the record, I do. Not knowing how long that's going to take is frustrating. Knowing that this is hurting my kids and Ken, and feeling I can't do that much for them, well, sucks. And blah, blah, blah I am not a martyr. This sucks for me, too. But I know why I am doing it. K is the one living in his body. My boys are the ones who are going through their first real kick in the arse. You know the one, where for the first time you realize, "oh, hold it. This is also how life can work? This is big stuff, me no like . . . huh, I'll need to readjust how I thought the world worked". And we'll get through, and we are getting through. I am, we are readjusting. I just don't want anything or anyone falling down too far while we do. You know?

Friday, October 22, 2010

Ken's mom's update.

“It’s sort of like he’s stuck in quicksand,” Ken’s case manager at New England Rehab explained this morning. “It’s a huge effort for him to do anything and every step tires him out enormously.” But he’s trying hard, and after a week everyone has seen signs of progress. She explained this during our first meeting there.

We arrived here this morning during OT, and with the therapist sitting at his bedside helping him bend his left arm, we saw him actually move it slowly. She assisted him a bit, but told us he was creating the initial movement. We could see the effort it took, so we knew exactly what the case manager meant when she talked to us later.

They’re estimating that Ken will be in rehab for 6 weeks. It will depend on the progress he makes each week that they’ll need to demonstrate to the insurance company. There’s no guarantee that he’ll be walking when he’s discharged, but he must be able to transfer to a car. In that case he’ll be able to continue as an outpatient. It’s all a little overwhelming, but we’ll take it one step at a time. In the meantime, we’ll need to investigate adaptations to the house so we can have contractors in place in case we need to make changes for him.

And also in the meantime, we see that he’s making progress. We saw it in PT yesterday and again with his eating. I made a cheese and sour cream kugel (noodle pudding) last night for the family and we took some to Ken today, which he was looking forward to eating. The Speech Therapist approved its consistency and was there overseeing his eating when we left.

They might move him to another room. The doctor feels it would be better for him to be in a room where the door is to his left so Ken will be forced to turn that way to see who’s entering and leaving – another strategy to get him to shift more movement to the left side. Clever, these rehab people.
It is weird that this blog has, according to not a few people, become something other than just a place for Ken. It has become our story of this thing that has happened to Ken, and those who love him. And there are many. I want Ken, when he is ready to read this (I don't think he has yet come to that point), to read his story. I want him reminded of what he went through, how he is loved.

I hope he doesn't mind me sharing this. We were talking yesterday night. I was laying down and I told him that he is the best thing that ever happened to me. He replied, " and the worst". So, I wrote him this letter. I want it on the blog because, as I said, he will read it someday. I want this out here for him, in this little universe that has been created for him, by him.


You are the best thing that ever happened to me. The worst thing was waiting for you to come out of surgery, terrified that you would die. The next was waiting for you to wake up, waiting for you to signal it was still you. You are still you. Still funny, and kind, and thoughtful. Still wanting to take care of me. And somehow even with all that has happened to you, you do take care of me. You are not the stroke. You are you. And you are still home to me.

I worry that the stroke will take you slowly, if you see only what you can’t do. May I remind you of what you survived? Two brain surgeries, a heart attack and a stroke. You survived and can now choose to be in your life. And I know you are choosing that, I know you are working so hard.

I have no idea what you are going through, have no idea of what it’s like to live in your body as it is now. I do know: that you will get better, you will watch the boys grow up, you will get love and support, you will have joy.

I can’t guarantee that the life we have from now on will be the life we would’ve chosen, but there will be choices involved. I will try to choose, every day, to help us find our new life. Because life post-stroke will be different. We have to adjust. We have to find a way to be grateful. To move from where we are, not where we wish we were.

You came back. And yesterday when I lay down next to you I relaxed for the first time in weeks. I love you.


You have all helped to remind him, hold him up, given so much I am blown away (UNUM, you know what I'm talking about), so please continue. He is here.

Thursday, October 21, 2010

TV with my husband

Short blog, am still at the rehab. Going to watch Community with K. Ken says "keep on a rocking' girl".

Worst caffeine headache ever

Had my first cup of coffee in weeks today. I missed it really, I've missed anything with a flavor BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Wednesday, October 20, 2010

mashed potatoes and meat

Had his first meal today. Still getting tube feedings, but started with a small meal of mashed taters, meatloaf, thickened OJ, some cottage cheese. Seemed to enjoy it.

His voice is much stronger, and he is enjoying the phone calls. Thank you!

He seems to be doing better. He lifted his hips off the ground today. Someone has to hold his left foot in place but he is definitely lifting up and using his hip flexors. Had some shrugging of his left shoulder. AND he stood up on the parallel bars holding up his body weight.

The boys visited him today and had a wonderful time playing with the whoopie cushions a friend had sent. Actually a couple of whoopies were sent. Can't ever have enought of them is what I say.

Progress.

Tuesday, October 19, 2010

Thanks

Thanks for all the generous babysitting time. I'll call/write each of you to firm up.

Ken had another good day. He's starting thick liquid tomorrow. He'll still be getting nutrients from the G-tube, but slowly be getting more and more real food. Squash soup next week. They gave him electrical stimulation on his legs today and he said it hurt some but not too much. He's being stoic, I think.

His spirits are pretty good. Though I think he's afraid of telling me too much. It especially hurts him to think of the boys. He doesn't want them to be upset, scared or worried. I was telling him about Wyatt bringing his bear that MGH gave him to Show and Tell tomorrow. How W was showing me where the aneurysm is on Dada's head. At first Ken laughed and asked if the bear had a "hole taken out". Then I looked up and his face was so sad. He said, "my poor, poor boy". I think he feels the same way I do. As much as I want them to know the words and understand what's happening it is hard to hear them say it. It feels ugly and wrong. They shouldn't know those words. But they are doing well, and they love him very much. We talk on the phone every night. I think I'm going to bring them in to see him tomorrow.

He loves visits and calls. His number is 662-8577. Please call, and visit. in fact, call first just to let him know because he has his schedule in front of him and can tell you when he's available.

Monday, October 18, 2010

HELP!

Okay, so here's what we need. Remember how I told you I'd be asking for the help when he was in rehab. Here's me asking. I am going to need childcare 5-6 hrs on October 29th-the 31st, November 20th and 21st. I am picky, so it should be people I know and my kids know. Sorry, that's just how I roll. Anyone able to do that?

we danced

Ken had a very tiring first full day. They took out his catheter (successful so far) which I think was much more comfortable. He had an eval for his swallowing and did very well. Tomorrow he is having a barium test to more specifically understand what consistency he can eat. But the ST (speech therapist) said Ken looked really good. Here's hoping I can make him the roasted garlic, sage and butternut squash soup he likes soon. He's on upside down yoohoo now. Well, the stuff looks like yoohoo, but it's chock full of nutrients.

They got him standing on a special PT thing that holds him in place. We tossed a ball back and forth and Ken was up there for about half an hour. It was great. OT was spent working on his sitting balance, which is much, much improved. He'd been listing fat to the left and backward and forward. He couldn't quite figure out where his body was in space. Today he knew when he was upright. I was kneeling in front of him and we hugged and then swayed to a song that was playing in the gym. I wish I could remember the song. I'll know it when I hear it again. It was a lot of good things.

I spoke to our caseworker and she recommended that people come in 2 at a time and stay for 15 minutes. Remember that he is tired and being with people is tiring. But he loves the visits, and as he gets stronger he'll be able to do more.

Sunday, October 17, 2010

visits

Please come see him! Sorry if I haven't said it before. I will check on specific times that it's allowed. I also want to check in with his physicians etc, about how much and many can go at once. That means you UNUM! No flooding of the gates. Just check in with each other about who's going when. He loves it, but he also loves to entertain his friends and that's tiring right now. All the stroke books say to just be mellow. He's not deaf (as he told me the other day, was I yelling? me? noooo)(this was after he said to me "why are you sticking your face in my face?)(me. subtle). Don't give him too much to process at once. He's still there, and still quick witted, it's just the mechanics are a bit slower. The rehab's address is: 335 Brighton Ave # 201 in Portland. It's up the hill on the right as you are going from USM to Stevens Ave, part of Maine Med. I know that means little to you non-locals. But if you need more incentive to visit, the Udder Place just at the corner up from the rehab has excellent coffee and bagels (well, excellent bagels for Maine). The number for the general operator is 662-8000, just ask for Ken. And give him some rings to answer. He probably has to put down his iTouch first.

First visit with the boys

So, I did all the things a good (albeit rusty) social worker would do. Gave them a very accurate report of what Dada would look like. Drew pictures, described everything in detail (except for the catheter, I didn't go into full detail about that). They were very prepared and it was good. It was a good first visit. We arrived to find Maddie and Jen (friends from work) visiting (yummy banana bread btw). The boys both got some snuggle time with Dada and talked. They played with a small magnadoodle. We decorated his helmet with some stars, small pom poms and glitter bug stickers, tres butch. I think we left him tired, but good. Wyatt and Gus were fine. Wyatt told me his scar wasn't "sooo bad". I talked to them in fight language. That Dada had fought hard and won against the aneurysm, but he was wounded and healing. And that he was still fighting the stroke. They seemed to get it, or Wyatt did. Gus was busy with the pterodactyl.

Melissa and Scott from K's work came by to offer help with the house. Thank you! Everyone has been so nice. As K's parents, K and I figure out a good schedule, I'll be able to understand what to do with all you lovely people and your lovely offers. Just know it means so so so so so so much to have you all to lean on.

Saturday, October 16, 2010

Just a post script:
I upset people I love very much with the way I described Ken earlier. I am sorry if I offended anyone, or made them think I wasn't respecting K's struggles and victories. In my mind I was just trying to let visitors know what to expect. He looks like he's been through a battle. The worst that he will ever have to endure (please please please). And I wanted to make it light, wanted them to know this part is only going to get better too. I hope that I have made it abundantly clear how much he is too me. More than I can say, because it is so ethereal it is without words. He forms the "nebula of my heart" (yes I am stealing that from him). I can't imagine life without him. And, frankly, even if he looked like full on Frankenstein for the rest of our lives together he couldn't get rid of me. So, anyway, I just wanted that flying out there into the world, too.

call to home

We have all seen his blog. Maybe mine is now unnecessary. But in the interest of keeping up the news: he is going into full on recovery mode. The boys are seeing him for the first time tomorrow. I've told them how he looks, and he's spoken to them on the phone. Here's hoping it all goes smoothly. He's been calling at bedtime to say goodnight and listen to books and stories. Wyatt (my wise and compassionate boy) is very patient, waiting for Dada to reply to questions. It's kind of magical to watch him understand how to help Dada heal. Gus, of course, is just jabbering away with glee. Ken's two sons. He needs it both, I think.

He was exhausted after his evaluations with the OT, PT and speech person today. Fell asleep immediately. Sleep heals.

In Blog I Trust

I'm so overwhelmed by the response to the blog, I don't know what to say. l thank you all, of course, for doing your part and then some; hearing comments at the end of each day kept me going. If I'd built this community brick by brick, I could never have expected the kind of organic response it got. Thank you from the bottom of my and my family's heart.

BTW, I've proofed this on 5/2/12, because iOS autocorrect made a mess of it originally.

Apin bloh i rrust

Lin blog I trust. N so overwhelmed by thurs.response to the blo, I don't know what to saylthanj you all , of course, for doing your part and then some hearing comments at the end of each day kept me going. If I'd built this community brick by by brick, I could never have expected rhe kind of organic repulse it got. Thank toy from the bottom of by and my family'sheart.
BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

From rehab

Ken is here. He's in real clothes, and aside from the stove in quality of his skull free head and Frankensteinian scar he's looking sweet. He's got a pretty flat affect, meaning his face shows little emotion, but his voice, though slow is lively-ish. More later.

Thursday, October 14, 2010

help in decorating

Wow, it seems that Ken MAY be discharged tomorrow. Maybe, maybe, maybe. He got the NG-tube removed so his nose is back, though a bit swollen. Anyway, onto the real resaon for my impromptu blogging, as I have previously stated we are going to be decorating his rehab room. Anybody want to send some artwork, photos (both personal and pretty. I am thinking inspiring landscapes.) etc.? If you'd like to our address is: 24 Valley Rd. Cumberland, Maine 04021. Since many of you live far away I wanted to give you the option of sending stuff. Those of you that live nearby, I expect will visit and bring the pretty. I"m hoping they'll accept visitors right away.

We are having a meeting with the doctors today. Mostly for me, I want to make sure I am leaving here with as much information about what happened as possible. He's doing so well. I am very grateful. But it is extremely hard to see him being moved, hard to see his left side so lifeless, hard to know just how much he's going to have to work to get his life back. I worry about the emotional toll. One of the question I have for the neuro team is what specifically was damaged. I can see physically what has happened, but what about his emotional centers. It's all a big mystery. He is sleeping in anticipation of the meeting so he can be bright eyed and bushy tailed.

Be well everyone! And, again Amy Kimball, thank you for the book. It's been great. They shared the same surgeon. Wow.

Wednesday, October 13, 2010

G-tube is in

Another good day. Tessy was here, and very helpful. She gave me a lot of great tips and good things to look for to help him. He was a little more tired today than yesterday, but still very funny and quick.He spoke to the boys. Wyatt told him all about going to the fire station in Cumberland. I don't know what Gus said, something about something being something and also big, big, BIG. He's laughing more, which is a fantastic sound.
Tomorrow there is going to be team meeting covering any questions we have regarding his prognosis, the specifics of what parts of his brain were affected, and discharge.

Tuesday, October 12, 2010

Shana Punim

Shana Punim, is yiddish for pretty face or "such a face" (as my husband, who speaks so much Yiddish tells me), I use it with ken. I am such a shiksa. Anyway, how that relates to Ken is this: He was wide eyed today. Okay, well, not completely wide eyed, but pretty darned close, darn it. And he was talking up a storm, and smiling (it's lopsided, but it's there). Tessy and I arrived this afternoon. Ken's brother was there. And Ken was joking and quite sassy today. I was doing range of motion with him. Then Tess had him push on her hands with his left foot and he did. She said he gave a couple of good heaves. It was wonderful. It was a great day. Lots of kisses.

They are going to be putting the G-tube in tomorrow. The speech pathologist was very encouraged by Ken's progress. He's my hero. He may be moving on to rehab sooner rather then later. He has to have the G-tube in for 24 hours before they can move him and be medically cleared. So, next we find out if he is medically cleared. I dom't think there's anything that is going to slow him up in that respect. His heart enzymes look good, he's doing well pain wise, he's up and responsive. Here's hoping!

P.S.
Thank you to Ellen and Maggie for the wonderful b-day gifts. The pj's are so comfy. And the lavender smells great.

Monday, October 11, 2010

G-tube it is

Well, a bit disappointingly, the amantidine has not improved Ken's swallowing enough to be able to avoid the G-tube which will probably be put in tomorrow. Another surgery. Which, I have to say, makes me a bit sick to my stomach. Ironic, no? As reported by his parents he had another good day. Pretty talkative this morning. His brother Jeff is there now. I talked to Ken briefly, but he was pretty tired by then.

I visited New England Rehab this morning. We are hoping he can go there rather than the rehab in Boston. But I gotta say it was pretty depressing, so stale and beige and quiet. It's hard to think of Ken having to be there. Of Ken having to learn to eat, talk, walk, bathe. I met a couple there. Norman and Sherry (not sure that was her name). Norman had had a massive stroke at about the same time Ken was getting his surgery. He, like Ken, is paralegic on his left side. But he's just started moving his hand. Good.

I was trying to decide if knowing in advance would be better, or just having it happen would be. I think I'm glad I knew it was coming, or was a possibility. We were able to say what we needed to say, just in case.

I hope I can do this. I hope I can be the person he needs me to be, that my kids need me to be, that I need me to be.

By the way, it's seems that everyone in the universe is connected to this blog. So, in the interest of giving good advice. . . If anyone knows anyone who needs a neurosurgeon: Christopher S. Ogilvy is the man to seek. He is not only a master surgeon (as everyone on the neuro ward is quick to tell me) he is a kind and involved physician (as I can attest). I hope none of you ever need him, but I would feel remiss if I didn't put the information out there. It could save a life. I know he saved Ken's.

Sunday, October 10, 2010

good

He had a good day again. Nothing new to report except he has a new NG tube. Thinner so it may make it easier for him to talk and swallow. I spoke to him on the phone. He talked to the boys. Wyatt was a little disturbed by his voice, so he didn't stay on long. But Gus yapped at him for a bit.
Ken asked me about the shower in our basement. I thought that was a bit strange, but then I spoke to his mom. It has to do with his plan to get home. He's thinking he'll be down there for a while so that he has easy access to a full-ish (very small) bathroom without having to deal with stairs. I don't know if he thinks I'm going to be doing firefighter lifts to get him to the TV, or what. Guess I should start doing squats now.
Sorry this is short. I've got a headache, think I'll go rest with a good book (thank you Amy K and Ed). Be well!

Saturday, October 09, 2010

tubes, tubes and more tubes

They put him on the amantidine and it seemed to make him more alert. They are thinking about putting in a feeding tube into his belly (called G-tube) but are hoping that if the stimulant works it may help him with the swallowing and talking, which he's having trouble with. They are also hoping because they don't want to do another surgery (though this one is very "minor") because they are not precisely sure about damage to his heart. They don't think it's serious, but they aren't taking any chances. You betcha! NO MORE CHANCES! I concur. The G-tube is better for actually getting him nutrition, what he has now is a tube in through his nose (NG-tube) and that's used for about 2 weeks at most. Either way he's going to have lost weight. My sister was on a G-tube for a month and a half and she was skeletal when she was able to come off.

I just talked to Ken on the phone. I miss him so much. His voice is definitely clearer, but still sounds a bit like he's talking while chewing. His Aunt Ellen and Cousin Maggie, two fantastic women are there this weekend. They brought a foose (sp?) ball and were playing catch with him. His father reports that K moved his foot. Just once, but once is better than yesterday's none.

Another good day.

Friday, October 08, 2010

Sleepy day for us all

Ken was sleepy, I was sleepy, Kens's mom Sara was sleepy. Only Michael, K's dad, wasn't sleepy. K had another good day. He is now on the general neuro floor. C U ICU! A little ICU humor there, hardee har har. They are giving him stimulant amantidine, to rouse him a bit. They are hoping that will help with him being able to initiate his speech, swallowing and keep his eyes open.

We've been doing a lot of range of motion stuff and visualization, as Tess suggested (sorry Tessy I didn't know it was you, good advice). I move Ken on his left side and he visualizes those same movements. It's good, because I hate just sitting around waiting for others to help him. It gives his parents and I something really concrete and truly useful to do.

I am home for the weekend through until Monday morning, I left around 1pm. I didn't hear this next part, but apparently he made another joke. It went something like this: he was saying goodbye to his PT aide Edgar and (I didn't know this) Candice Bergman's father was named Edgar and (I didn't know this either) K's dad Michael used to say "Mr. Bergman, Mr. Bergman". So, of course, Ken says that. I am sure it was an especially good gift to Michael and Sara.

It's just amazing to know he's in there. Still my dear, funny, endearing best friend. And when he does open his eyes it's like chrismukkah morning.

Thank you to Zarra for giving me a ride from the bus! Thank you to everyone for all the comments. He really looks forward to them.

Rescue

Last week I posted about how different my life was this time last year. How I felt ridiculously lucky for my house and family. Obviously I still very, very much do. But . . . how do I communicate this? I suppose I could just tell you what prompted my thoughts, well what prompted me to write them.

There was a woman at the hospital yesterday who had just been told that her fiancee was possibly going to die, and if not, that he would be a vegetable for the rest of his life. This woman was alone, utterly. She had no friends, no family. Those she had called were not coming to be with her. It was very hard to see. Because I saw myself in the panic, fear, lostness. The big difference was that I was not alone. I had, and have, people to mourn and celebrate with (plenty to celebrate). It is a very powerful thing to know had things not gone this way I would have had such support. I would have been held up, and given light. I have been given so much light. It's been sent by people we don't even know. This experience is one I wouldn't wish on anyone. But I am grateful for this one part.

There's this great book I read after Gus was born called Here If You Need Me. It's written by a minister whose husband was killed in a car crash. They have four children. She tells a story in the book (I'll shorten it) about a man sitting in a bar. He tells the barkeep, "I was lost in the woods, and I prayed and prayed, but God didn't save me". Barkeep says, "well, how'd you get here?". Man says, "Helicopter rescued me". Now I am not a religious person. But I get it. Rescue doesn't always come in the form you want it to, sometimes it doesn't come. But when, and if, it does, Recognize It. Do I wish we had never had to go through this? You betcha! Do I wish he hadn't needed the second surgery? Heck, yeah! Do I wish there was a miracle and he just recovered and that there was going to be a medical journal written exclusively about my husband? Yesiree, I do! But I am trying hard to be grateful and recognize the rescue we did get. There are people in that hospital who will never see there loved one again. People who are hearing the diagnosis that they won't be rescued. I must remember, and you all can remind me, that I am lucky.

We have a long recovery ahead, and I have no idea what's going to happen, good or bad. But I hope I remember this. Because this is good.

Thursday, October 07, 2010

last post didn't publish

So, sorry. The actual blog I had written didn't get published. Here's the short version:

He MOVED HIS LEFT LEG! YAY. Several times and with real determination.

He's just waiting for any open bed, then he'll be moved to the general neuro floor.

Dr. Hirschberg, head of physical medicine, said that while Ken has a hard 3-6 months ahead of him, he should make a good recovery.

He's talking and opening his eyes more.

The other post that did not get published was a lot better than this one. It really was. But you get the gist. All good.

Thnkgs to be grateful for

Wednesday, October 06, 2010

A marriage proposal, and a bear

Today Ken asked me to marry him. I am wearing his engagement ring, have been since he had to take off his rings for surgery. So there I was sitting with him and he felt the ring. He kept trying to take it off. And I kept saying, "honey, you cant wear it yet your hand is still swollen". But he kept pulling at it, so finally I gave it to him. He started to try to put it back on. I said, "are you asking me to marry you?". Thumbs up, I kissed him and kissed him and said yes. If anyone can beat that as a marriage proposal, I don't know who it is. He told the speech pathologist his name, where he is, who I am and counted from one to ten. He is very, very Ken. He wrote to ask what day it was, we told him it was Wednesday and he wrote "cougar town" (an ABC show). And he insisted on using his itough to surf the web. Luckily his (and my) lovely friend Jamie came by and helped us figure out how to help him do that. He was making a big effort to do it himself, but he still can't open his eyes (I had to hold them open) and doesn't quite have the fine motor skills yet. But we help him look up the cinematographer for Scott Pilgrim v. The World because he just had to know if he'd also done The Matrix. He had. It was Bill Pope by the way.

He gave Tess the middle finger per request.

He also made a joke about Nancy Grace having as affair with a bear, you had to be there. But he made himself laugh a wonderful sight. I admire him so much. His grace and strength right now astound me.

P.S.

To everyone who's commenting PLEASE put your first and lest initial in the comment. We are reading him the comments but many of them are coming up anonymous.

P.P.S.

Who wrote the comment about visualizing his left side moving and checking his skin? Thank you!

Goodnight, everyone. Please keep writing, he loves hearing it.

Tuesday, October 05, 2010

He said no!

He's looking much, much better. no more oxygen, and he's got far fewer iv's in his arms. I saw him in the helmet, it is pretty darn cute. Or as cute as anyone can be in this situation. And (drum roll, please) he said "no". It was very garbled and long, but it was the real deal. And, and (another drum roll, please) he wrote! He was wiggling his fingers and we asked if he wanted a pen. He did, we gave him one and he was asking questions about the surgeries. A couple of neurologists came in and he wrote questions to them. It was wonderful. I am just hoping we didn't tell him something that upset him. He wrote the word incontinent. Big word, folks, big word. I know I would've opted for the slang alternative.

That's all I've got tonight. That's a lot.

Monday, October 04, 2010

sitting up, with helmet

Ken's parents have been keeping me well informed today. He is sitting up, with a helmet on, just in case he wanted to skateboard or something (I give that joke credit to my father in law). He opened one eye half-way. He waved his parents into the room so he could hear them talk. He made noises.

The areas of concern are that he is still not opening his eyes or talking. It was made fairly clear to me today that the fact he can't move his left side is due to the stroke, not to swelling. So it's here to stay. He'll be in rehab for a long while. But the good news is he's young and motivated. That will definitely help him in his recovery.

I look up and see what I wrote and think, "boy, whoever's writing that is calm". I don't feel calm. I feel incredibly angry for Ken, and our sons, and myself. And I feel incredibly lucky that he is still here. I know more certainly now how close he came to dying.

We've been in our house a year now. And I can't help but think back to how different life was last year. How ridiculously lucky I felt, moving into this house I loved. Having this beautiful family. I look at old photos and all I see is that the monster in his head was there the whole time, slowly doing this to him. It was there the first time he held his sons, when we got married, maybe when we met. Then, and I know this is crazy, I get mad at his brain. WHY did it accommodate the damn thing this well? Why not give a little more of a nudge that something wasn't quite right? I mean, really, giving Ken short moments of anxiety /deja vu? Who would've known to do anything about that? Especially because, as all who love him know, he tends toward that anyway.

People keep telling me to try not to think too far ahead. And I know they are right. I need to move with him in his progress. But it's impossible to look at my kids and not see how their world has changed. Impossible not to feel heartbroken for the future that we may not have. Who knows maybe there will be a miracle and he will recover fully? We will adapt to whatever future we have now, with help and love. But I refuse to be stoic about it. I refuse. I rail against it. Against this fight Ken shouldn't have to make. Against the anguish I can only imagine he is feeling. I try not to think about that. What he is thinking and feeling right now. If I thought about it, it would be too much.

I just put the boys down. I was drowsing with Wyatt and heard a noise downstairs, and just thought "oh Ken's cleaning up the kitchen". I've had a couple of those. It's hard being at the house, seeing all of our things. Being reminded of him wherever I look. There's a bag of popcorn on our kitchen counter that we bought at the fair in the morning before we went down to Boston. I can't throw it away. So stupid, but I can't.

It helps to just throw this stuff up and get it out, to know there are witnesses to this despicable thing. See there? Even the word despicable reminds me of him because we saw Despicable Me together. Damn you, Steve Carell!

I just got off the phone with his mother, apparently our boy was thumb wrestling with his father. I bet he kicks my ass when I go back tomorrow. He always does.

Sunday, October 03, 2010

holding steady

Ken's no longer on a breathing tube, just an oxygen mask. His mom said he was yawning up a storm after they took it out. They've also lessened his sedation because of that. The nurse prompted him to give his parents a wave when they left, and he did. All good things. All good things. . . As his mom said to me, baby steps.
I arrived home today to be with the boys until I go back Tuesday. The boys are great, though a bit out of sorts with me being away so long. When I got out of the car Gus ran up and immediately looked behind me and said, "where's Dada?". I told them all that I thought they could understand about what's going on with their dad. I think it was the hardest thing I've ever done. Hearing Wyatt use the word stroke. And ask me when his dad will move again, when he'll come home, not having any good answers. But then, godlovem, five minutes later they were off playing.

Thank you all for your support and love. Please know how much we all appreciate it.

Saturday, October 02, 2010

The bad news is . . .

The bad news is that we know he had a stroke. We don't know how big, or what it will affect, how much it will affect. There is still a lot of swelling so the dr's are having a hard time distinguishing between that and what is stroke damage. He is not moving his left side or opening his eyes.

But he rubbed my hand with his finger when his mom told him it was my birthday. And, yes, I am crying as I write this. He is still responding briskly to commands on his right side. His heart is looking better and better. They think he'll need to be in ICU for the rest of the week, but hopefully they can take out the breathing tube soon.

I was doing okay with all this, then I called my house to talk to Wyatt and Gus. My mom didn't answer so the voicemail came on with his voice. That was it, ladies and gents. I just bent over and cried. I miss him. And though I really do know that I am not alone in all this, I just want him.

The other news is that we spotted a woman smaller than my very petite mother in law Sara, which is quite rare. If I'd had a camera I might have tried to sneak a photo, for proof to show the skeptics.

Squeeze the ones you love.

brains

I have been thinking a lot about brains, obviously. Mine is being very kind in some ways. I haven't had any dreams about Ken. I think that would be the worst, if I had to wake up from a dream in which he was, well, in which he was him. And then have to remember this thing is happening. Like a punch in the stomach.

I also want to say how much I love Ken's family. His mother Sara, father Michael, sister Lisa, and brother Jeff. They are, like Ken, truly good and kind people. I don't know what I would do without them right now, to lean on and cry with. And how much I love my family. My mom who is taking care of the kids and house, my sister who has canceled her teaching classes to be here. And my dad who is up north hobbling around and swearing for his daughter and her family.

That's what I want to do right now. Not the hobbling part, but the swearing. I am so angry that this is happening to my kids, and Ken. My lovely, lovely Ken. And, I mean seriously, three times I have to live through this? But then I have to remember that he's still here, and breathing, and thumbs upping briskly. And I have to remember to hope that things will only get better from here. Today, for my birthday, I wish for another stable day. Well, you all know what I'm really wishing for . . .

Friday, October 01, 2010

another day. it's realy only been3?

Today was stable. No change. Still with the brisk thumbs upping. The echo on his heart showed some damage, but nothing they will have do anything about now. He looks horrible. Tubes and wires everywhere. He's got a tube down his NG tube to feed him. He's still intubated (sp). They shaved his beard, that's really been the worst of it for me.

Thank you all for the love. I am telling Ken all about it. I do feel it. And it means the world.

briskly

No change, but the nurse did describe his right side movements as "brisk". We are able to be in the room with him much of the time when he's not having tests etc. He's getting an echocardiagram (sp) to see how much damage there was to his heart. We'll be with him soon.

Thursday, September 30, 2010

thumbs up

A bit of progress. Before we left tonight Ken was able to do a little thumbs up for the doctors and wiggle his toes on the right side. The left side was significantly weaker, but he did move his toes some.

Thank you everyone for all the love and messages. We are getting them and appreciating them, very much.

serious as a heart attack

So, our boy is very, very sick. The sickest (as i was informed by the Head of the Neuro ICU) of the sick. I would have been just fine without that particular information. Ken had a heart attack. Yup. They aren't sure how serious yet. Won't know for 24 hours. They can't do anything about it because all the meds they'd give him for it would be harmful to his head. I feel like somebody just set me down in the middle of a foreign country with no map, no knowledge of the language, culture or history. I am lost. And I want to go home. I desperately, desperately want to go home. I want to be at my kitchen table eating Ken's french toast, talking with the boys. I want to listen to Ken explaining some random fact to Wyatt about the way the world works. That is what I want.

update

He is out of surgery. He is intubated, has a tube coming out of his head and something to measure his brain pressure. They had to remove a portion of his skull in order to give his brain room to swell. They won't know if he's had a stroke or not for a few days. They are watching him closely right now. He'll be kept asleep for 2-3 days. That's all I got.

setback

Ken has had some setbacks. He had been responding well, lifting hands and legs, pushing and pulling. Equal strength on both sides. However this morning he showed marked weakness on his left side. It happened very quickly. The doctor fears that this may be a blood flow issue. He had a CT which showed a fair amount of swelling (no big surprise there) which could explain the blood flow issue, but because it came on so suddenly the doctor is afraid that it points more toward a stroke or that the blood is just not getting through. He had to repair a tear in an artery and that could quite possibly impede the blood. So we wait. He'll be in the ICU at least through the weekend.

Okay, so here goes:

Dear Universe,

He is a good man. He is kind, sweet, honorable. He is my home, and best friend. I know I have had good luck in the past. I got my sister back, and Gus. But please, please give me back Ken. Have I mentioned he has the softest and warmest hands, and a wonderful giggle? Have I mentioned that his kids adore him, that when he's with him putting them to bed his voice actually changes with love?

Yours,

Jamie

New update. He is hemorrhaging. They are taking him into the OR again. They will be taking off a piece of his skull to give the brain a place to swell, and try to deal with the hemorrhage. I don't know what to say now. I don't have words, just love, fear and hope.

setback

Ken has had some setbacks. He had been responding well, lifting hands and legs, pushing and pulling. Equal strength on both sides. However this morning he showed marked weakness on his left side. It happened very quickly. The doctor fears that this may be a blood flow issue. He had a CT which showed a fair amount of swelling (no big surprise there) which could explain the blood flow issue, but because it came on so suddenly the doctor is afraid that it points more toward a stroke or that the blood is just not getting through. He had to repair a tear in an artery and that could quite possibly impede the blood. So we wait. He'll be in the ICU at least through the weekend.

Okay, so here goes:

Dear Universe,

He is a good man. He is kind, sweet, honorable. He is my home, and best friend. I know I have had good luck in the past. I got my sister back, and Gus. But please, please give me back Ken. Have I mentioned he has the softest and warmest hands, and a wonderful giggle? Have I mentioned that his kids adore him, that when he's with him putting them to bed his voice actually changes with love?

Yours,

Jamie

New update. He is hemorrhaging. They are taking him into the OR again. They will be taking off a piece of his skull to give the brain a place to swell, and try to deal with the hemorrhage. I don't know what to say now. I don't have words, just love, fear and hope.

Wednesday, September 29, 2010

more of an update from Jamie

He's groggy and he's sleepy, he's had a little to drink, he's responding well, moving well. I wanted to make this into a haiku, but I've been up since 4:30, and it is just beyond me. That last bit rhymed though, eh? Clever.

Ken's Progress

So, here i am blogging. I kind of, really, very officially hate blogs. Maybe because I associate it with the people I love being sick. My sister, Gus, and now Ken. Yup, hate blogs. I know it's not rational, but I do. Surgery is done. He's being moved to the neuro ICU. He's moving both sides, left is weaker. And he's saying his name. Dr. Ogilvie is "cautiously optimistic". Cautious optimism.

Ken's Progress

Tuesday, September 28, 2010

Last Pre-Surgery Post

I always had the sneaking suspicion it would take a near-death experience to get me to live my life courageously.Though I don't actually know if the near-death experience was finding out about the aneurysm, if it will be the surgery to remove the aneurysm, or neither of the above. I don't know if my second chance comes after tomorrow or if it was the last three months.

(By the way, I also hope my near-death experience can serve as your own.)

During the first week after my diagnosis, I felt like I had nitro-glycerin in my head. Everything I did was coupled with the thought, "This could be the last time I..." And every time my photo album screen saver started, I had to quickly move the mouse and stop it. Felt too much like my life flashing before my eyes.

I also was motivated to "live in the now" and carpe the diem. I considered doing crazy things (some very sedentary but crazy things) and blaming them on the aneurysm.That didn't really pan out. But I woke up every day a little surprised. I savored every moment. I remember a very specific moment, when I was changing the kitchen garbage bag, thinking, "This might be the last time I change the kitchen garbage bag." What kind of last act would that be? I should have been grabbing life, not stretching an ill-fitting plastic bag, with both hands.

But I also realized that Hedonism is completely impractical. Someone has to change the garbage bag. Usually, it's Jamie. But that's beside the point.

Anyway, thinking about the time-bomb in my head, I was also very calm. I had found a Zen-like state, where I wasn't sweating the small stuff. Though there's a fine line between Zen and being emotionally unavailable. Still, I've been trying not to sweat the small stuff, while also acknowledging that the best things in life are small. Usually, they are moments. So we need to appreciate some small stuff while ignoring others. It's all about priorities and perspective.

If it isn't readily apparent, I so want to take something away from this experience. I don't want it to go to waste or lead to bitterness. I hope the same for you all. Call it clarity, call it purpose. But hopefully call it lasting and meaningful. It's so easy to get sucked back into the bad minutia, all the while neglecting the good minutia. Over these three months, I've definitely felt myself wax and wane between clarity of purpose and the blinders of everyday living.


I've cried twice, once at the beginning of this ordeal, once during the past few days. Which is really saying something, since I hadn't had a real cry in a good thirty years. I have to say, I don't like the sound it makes. I don't like feeling that out of control. It was way too visceral. I applaud anyone who can do so on a regular basis and remain a functioning member of society. Both times I cried, I was thinking about leaving my kids behind. I do not want to do that. I am going to do everything I can to prevent that.

But I've also seen how blessed I am by everything I have now. Never mind what I haven't yet accomplished. I have a ton now. I appreciate everything everyone has done or said for me and my family. All the well wishes, positive energy, prayers, whatever you want to call them. I'm not a religious person. I could follow that with, "but I do consider myself a spiritual person." I'm actually not sure I do. But I am a devout agnostic. There are too many unanswered questions to believe otherwise (like, what's on the other side of an expanding or contracting universe?).

You've made me feel accomplished -- knowing that I've touched people's lives in a positive way more often than not.

Hopefully, there will be more to come, more to say. But if things don't go well, I only ask that you continue to put positive energy (and deeds) toward my family. Lend them the support they'll need, as much as you are able. Of course, everyone still has their own lives to live.

My other request would simply be that you live your lives appreciating what you have. And, if you don't appreciate what you have, please do something to remedy that, would you please? If there's something you've been meaning to say or do, do it now. There will always be tomorrow, but not always for you. Of course, that's pretty limiting -- to only have grand ambitions and desires you can achieve in a moment. It's okay to plan for the future and work gradually toward a goal. Just make sure it's the goal you truly want. So even if there is no tomorrow, for you, you'll head off to... wherever... knowing that you lived your life on your terms. And so everyone else you leave behind will remember to do the same.

And please watch Cougartown (Wednesdays on ABC) and Scott Pilgrim vs. the World (when it comes to DVD). They've both enriched my life; perhaps they'll do the same for you.

A Few Good Ideas

Part of what I needed to do while wrapping up at work was document some of my processes, for myself and others. In Knowledge Management we call that "collecting tacit knowledge". In the disability insurance world, we call it planning for the proverbial beer truck.

It definitely felt good to document the undocumented. And while I'm not necessarily looking to compile my legacy here, there are certainly some thoughts and ideas I've had which have thusfar gone unexpressed, except to individuals here and there. So I would like to put digital pen to digital paper to make explicit my otherwise unrealized ideas.

I've had a ton of them over the years, most of them long forgotten. As a teenager, I carried around my grandfather's IBM Think pad. See, prior to the other kind of ThinkPad, IBM employees actually carried around a small notebook that said "Think" on it. Everywhere I went, I had "Think". And when I had a thought, I would write it down. It was like Tweeting, but to myself. I thought I would somehow catalog them at some point -- small details for stories, book ideas, inventions. When I got my first Palm Pilot, I even installed a database program (which I called "Think"), to try and bring more structure to my thoughts. Yes, I added  metadata. But that didn't last long.

I'm not sure what sort of Think app I can get for my iTouch. I might need one. Because as much as I've been thankful for every breath lately, I've also cherished every thought. So I want to take a little time to jot down the ones that stayed with me:

The Memory Box

The idea here is just to take a relatively nice box and fill it with memories. Like a Pensieve of slips of  paper. I started one a long time ago for my parents. And, of course, never finished it (sorry, mom and dad). Just random thoughts of childhood which were meaningful at the time and continue to resonate for no particular reason -- swallowing a Ringling Bros. Circus flashlight lightbulb; "running away" under the dome climber during Apple's Way; standing next to the dishwasher of our new house (when I was 3) and asking when we could "go home". There are plenty more. Things we never have pictures of (especially back in the day of actual film), but moments we would or could never photograph regardless.

QuinCSI

A video mash-up of Quincy, M.E. and CSI. Basically, I wanted to re-edit (and edit down) an episode of Quincy using the style of CSI. And, of course, end the lead-in scene with Quincy saying, "But, Sam, it was murrderrr..." (smash-cut to title sequence, set to The Who's "Pinball Wizard").

Formulas

This is another video editing project. I want to piece together bits of episodes from formulaic shows into a brand new episode. Like that Three's Company episode where Mr. Furley misunderstands something he overhears Jack and Chrissy saying. Then wacky hi-jinx ensue, until they realize it was all just a big mistake. And go to the Regal Beagle for a beer. Remember that one? Exactly. I could edit down 100 episodes of that show into one.

Journey to the Center

I'll try to keep this as family friendly as possible. This is a commentary about gender politics. It's a novel about a man who has "relations" with a woman and then wakes up trapped in a strange palace. There he finds other men in the same situation, all trying to figure out how to escape. Oh, and they have erections all the time. It would probably be called Dickland for scandal/marketability. But, really, it's a look at gender stereotypes. Seriously. Can't we all just get along?

Reflection

I never quite figured out how this would work, but it starts with the basic premise that all mirrors have stopped working. Everyone gets lost without their vanity. I needed to do more research on optics, though the science isn't all that important. This was something I came up with a long time ago. I think when I was 15, staring at a fly outside the World Trade Center, during a party at Windows on the World (I'm sure it's in a "Think" pad somewhere). It was a road trip story, a quest. That ended with the lead character seeing his reflection in his lover's eyes. Maybe it's too hoaky. My "Careless Whisper" (which I remember George Michael later calling naive). Or maybe it's just a Kilgore Trout story, not actually meant to be fleshed out.

Play dom-jot, Schumann?

For STNG fans only, remember the episode Tapestry, where Picard gets stabbed through the heart? I always wanted to make a t-shirt that says, "Play dom-jot, Schumann?" with composer Robert Schumann's head replacing Picard's, standing next to a menacing Nausicaan. It's not worth explaining. If you think it's funny, you're a geek.

Evacuation

I took an environmental law class in college and did a paper about extreme environmental activism for my final  presentation. I created an amalgamated character who went from working with Biosphere 2Earth First, the Voluntary Human Extinction Movement (VHEMT), and the Involuntary Human Extinction Movement, to developing a scientific conspiracy to save the planet by convincing world leaders the Earth was headed for an environmental breakdown (such as, I don't know, global warming). And that evacuation to a space station was the only way to save humanity. With the human problem eliminated, the planet would be saved. 

Band Names

I used to maintain a long list of band names. Not sure where it is at this point. But I think my favorites are still "The Greatest Hits" (first album, "Best of") and "The Best Of" (first album, "Greatest Hits"). Also, if my friend Dan and I ever get our act together, we'll start the serendipitous Shapiro-Wilk Normality Test. I also thought it would be good to have an album of songs specifically written for commercial use. Like "Closing Time" or "We Are the Champions" or "At the Zoo".

Tear Bottles

A few months ago, before my diagnosis, I had a waking dream, on the cusp of slumber. I was in a cave, and a woman (a shaman of some kind), was showing me around. This was her home. One entire sloped wall had been carved into a set of stone shelves. Those shelves were filled with small glass bottles.And each bottle was filled with a clear liquid. I asked what they were. She told me that the bottles were filled with her tears, from particularly difficult times in her life. I've since done some research and discovered that tear bottles and Lachrymatory have had historic and cultural significance for thousands of years. But I was not consciously aware of any of that history when I had my "vision" (perhaps my aneurysm was). And for me, the message was about building strength through memories of adversity, honoring and appreciating obstacles, not mourning. So I'm counting it as my idea.

Lightning Farms

Let's harness the power of lightning! Lightning rods throughout Florida, tied into a storage and distribution system could solve the energy crisis. Until, of course, it's discovered that absorbing lightning either prevents the creation of new lightning or that certain plants need ground hits to survive.

Please Don't Let Me Break Him

A bedtime book for new parents, all about the panic-stricken first days of belly button nub infection paranoia, feeding guilt (too much? not enough?), diaper hovering (too much poop? not enough?), sleeping trauma (too much? not enough? is he breathing? I'm going to poke him just a little to make sure. Okay, just a little more.). I started this in part as a blog (with a few entries). But I think it would work best with illustrations alternately adorable and horrifying (just like parenting).

"Got Your Nose" (and other practical jokes to play on children)

A how-to book of the games we play to keep our children entertained, including:
  • taking off my finger
  • taking off my thumb
  • making my arm longer
  • come here and pull my finger
  • where's the ceiling?
  • my hands are on backwards!
  • winking
  • talking without talking (aka "mouthing")

The Recent Futurist

Another barely-started blog. Though I still like the idea of predicting the future through current innovation.

Sad Guy and Acquaintances

My year-and-a-half home with Wyatt was both incredibly rewarding (how many fathers get that opportunity?) and demoralizing (damn social norms). In that time, one of the things I did during naptime was draw a bit. And when I say "draw," I mean make lines, see what they sort of look like, and then turn them into something. I've been doing that for years to make cards (originally with actual paper and colored pencils, believe it or not). But, as with everything, I moved onto the computer, which opened up a world of image manipulation opportunities. My one and only "character" to come out of that was "Sad Guy". And I put his animated adventures in another blog (click the title images to see the animation).


I don't know if I've done justice to any of the ideas here. But, hopefully, I'll have a chance to make good on some of these and more to come.