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


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.


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.


Tuesday, October 19, 2010


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


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


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.
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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!

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


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.


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.


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.


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.


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.


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.