Top 10 things I've learned this year

10. Being young does not equal being invincible.
9. Having friends in several different time zones comes in handy when you need to call someone from the ICU at 2 a.m. EST.
8. Next time (oh, how I hope there's never a next time...) take pictures of self in ICU with husband so when husband asks months later why you did not visit him in the hospital, you can prove you were there. Jerk.
7. Always keep essential toiletries and at least a week's worth of clean clothes on hand so you don't have to go to three stores and do two loads of laundry to get everything together to pack for rehab.
6. 4-6 weeks doesn't mean the same to medical personnel as it means to the rest of us. My interpretation was that J.J. would be in rehab for between 28 and 42 days. Their interpretation was, hmmm, dude's been here for six days, let's send him packing.  Thank you, health insurance companies.
5. Sending husband with short-term memory loss to grocery store without a list is about as unpredictable and exciting as Russian Roulette. Do you feel lucky, punk? Do you?
4. The word "aphasia" is actually really difficult for someone with aphasia to pronouce, which just seems really cruel.
3. You can go months without using the word "pineapple" in a sentence without missing it much at all.
2. The most important words in the English language are I love you.
1. Taking care of yourself sometimes instead of everyone else around you isn't selfish. It's selfish not to do so.

Open apology to my children

This blog has focused mainly on the impacts this stroke has had on your dad and on me. I think it's time to acknowledge the fact that your lives will never be the same either. Just as it was unfair that this happened to your dad at 33, and to me at 30, it was unfair that the two of you at 8 and 4 had to deal with all of this.

I'm sorry. I could say that a million times, and it wouldn't even scratch the surface of what I feel.

I'm sorry that you had to see your dad collapse in front of you. I'm sorry for how scared you must have been when Gram woke you up in the middle of the night and packed you up to take you to her house. I'm sorry that I couldn't call you the day after the stroke; I was afraid that I'd start crying and scare you even more, which is a terrible excuse. I'm sorry for that, too. I'm sorry, Eli, for the fact that you had to do your homework in bits and pieces as I typed it up in emails to Gram.

I'm sorry I missed that whole week of your lives.

I'm sorry that when you came home, you had to see your dad in a hospital bed. I'm sorry that you were stripped of the concept of your dad as invincible so early on in life. No 8 and 4 year olds should ever have to grapple with the idea of their parents' mortality. I'm sorry that when you ask me to reassure you that the worst is over, I can't promise you that this will never happen again. The truth is, sometimes mommies can't make everything better and I'm sorry you know that.

I'm sorry that you had to wait for hours in the hospital lounge, wearing your church clothes, while I tried in vain to track down your dad's doctor. Leah, I'm sorry that we missed half of your first swimming lesson because your dad's physical therapy session ran over. Eli, I'm sorry that you missed taekwondo because I couldn't get both of you to your activities that were taking place at the same time on different ends of town.

I'm sorry that to visit your dad in rehab, you had to walk through hallways filled with patients recovering from all sorts of physical traumas. I'm sorry that you had to learn about amputations, and paraplegia, and brain injuries at the same time you were trying to digest the reality of what happened to your dad.

I'm really, really sorry you even know what a stroke is. I would take that knowledge away from you in a heartbeat if I could. Eli, although I'm so proud that you want to be a neurologist, I really wish you had no idea what a neurologist was. I'm sorry that you've come to understand a half-dozen or so medical specialties. Leah, I'm sorry that your "sick" dolls will never again be sick with a cold or the flu like other little girls' dollies are. I'm sorry that every time you doctor your dolls, it's because they are recovering from strokes.

I'm sorry that dinner consisted of Lean Cuisine Chicken Fettuccine way more often than I care to admit. I'm sorry, Eli, for almost making you late for the daycare van to school so often that I got lectured by the daycare director. I'm sorry about all the time both of you have had to spend in doctors' offices this year. I'm sorry, Eli, that you gained part of your knowledge of the "facts of life" from a stroke support group discussion about intimacy after stroke.

I'm sorry that you've had to learn to be so patient while waiting for your dad to finish his sentences. I'm sorry that you've sometimes had to look to me to interpret his words for you.

I'm sorry that you've had to put up with some not-so-nice behavior from both of us. Your dad has yelled at you out of frustration. I've snapped at you because I was so tired. There have been plenty of times when we've been distracted and haven't given you our full attention, and that wasn't right. I'm sorry for that.

I'm sorry that both of you have seen me cry sometimes. I'm sorry I wasn't a stronger mom who could always hold in her emotions until she was alone.

I'm sorry that I can't protect you from all of this, and that I can't take away the hurt. And I'm sorry that the two people I love most in this world have had their lives forever changed almost before they began.

But I love you, and your dad loves you, and we'll all get through this together....

Mommy

It's been brought to my attention...

That I haven't updated for quite some time. I'm sorry about that. First of all, we're busy. That's a true understatement, but it will have to suffice. Additionally, life is not real interesting over here. J.J. hasn't been to the doctor for a while now. Both the neurologist and cardiologist have discharged J.J. to our family doctor for monitoring of his medication. And since our family doctor apparently had a baby on Friday (congrats, Dr. Roberts!) we're hoping he won't need to see her for a while either. Probably the biggest medical issue J.J. is dealing with now is his gout. Indocin, the potent anti-inflammatory that is pretty much the only thing that touches his gout pain, interferes with cardiac function. After J.J.'s stroke, he was ordered to stay away from the stuff, since he was also in heart failure. Now that his cardiac function has improved so much, his orthopedist is going to talk to the cardiologist to see if J.J. can have it in a low dosage for short-term treatment. If we can get this ironed out, we'll be back on a level playing field.

Recovery wise, J.J. continues to make strides. I don't notice his aphasia very often anymore. I'm not sure if that speaks more to J.J.'s recovery or to mine, but it's noteworthy, I think. He's decided to take some classes in the spring focused on massage therapy. His goal is to be able to do some massage work with stroke survivors; we attended a conference a while back that focused on this topic and he's been very interested in it ever since. Since one of the first classes he'll have to take is Anatomy and Physiology (which just finished kicking my butt in the fall semester), I'm nervous about how this will work. I guess just like with everything else, we'll cross that bridge when we get to it.

Kids are doing well. Eli has had a rough patch at school with getting bullied, but I think this comes along with growing up. We've talked to everyone at his school, and he's one step away from being a black belt in taekwondo for crying out loud, so I think he'll be fine. But it still stinks as his Mom to sit back and watch it play out. Luckily, Leah's her happy-go-lucky self. No problems there.

As for me? I'm still kind of a wreck. I haven't had time to slow down this year, and it's taking its toll on me. I'm hoping that the next couple of weeks, when I have some short weeks at work and no classes to take or teach, will help out.

So there you have it. I'll try not to be such a stranger. In the meantime, happy holidays, y'all!

From J.J.

I know all of you must be wondering exactly how bad J.J.'s writing is, since I make reference to it frequently. The answer? Not awful. But definitely the most impacted area of his communication. Here's the rough draft he sent me for our Stroke Network column. I haven't made any changes at all to this...

My Aphasia isn't the worst it could be. As far as I'm concerned, it isn't really a problem, anymore. It's something that I'll beat. Someday. Maybe in a year, or 3 years, or however long it will take. Since my stroke, I've relearned to read, and I've gotten most of my speech back.

I've been doing this for more than 10 months. I've done it because I needed to. I love my wife, and she loves me. She loved me because of my mind. I said, and I wrote, what ever I thought was worth saying.

I never would have been able to tell her I loved her again if I hadn't decided to get better, and start healing my brain. I had the ability to tell her I loved her back before I left the hospital. It was really all I could tell her then, but I wasn't going to stop. We used to talk alot. About little things, big things, weather, politics, strange things, and things no one would really care about.

Now, for the most part, we can do that. I can tell her whatever I want to.

Yesterday was the best day I've had since the stroke. We talked about what it was like when we were kids, and what it was like for our parents to be kids. We talked about how our kids will be in the future. We talked about the stroke. Things that I couldn't remember while I was in the hospital. Then we just talked. Nothing really. It was great.

I had to have more than 8 hours of sleep before we could talk like that. She couldn't hear the problems I have speaking anymore. And for the most part, there weren't any. A few times I might have had to think about a word to say it, but only a few seconds.

It's amazing how far I've come in this time. It's been only a little bit of time, but it seems like it was an eternity since before the stroke. I can't rememebr the last time I didn't have to tell someone I had a stroke before talking to them on a telephone.

It's interesting to me that a lot of businesses have discovered that they need to have their people be ready for stroke survivors when they are talking to people. I've been to places where I tried to not tell them I had a stroke and they thought I was simple, and then i tell them I had a stroke, and everything is different with them. As soon as they are told they are talking to a stroke survivor, they immediately say they understand and they will wait as long as they have to while I speak, and they won't speak until I am done.

I tried not to tell people about my stroke while I was talking to people in beginning. Now, I tell people before I start talking to them. I don't think I'm going to do that anymore. I'm going to see if I can deal with them without them knowing. I want to know if they think I'm simple, or if they don't see a problem. Maybe they'll never notice. I hope so.

Becoming real

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."--Margery Williams, The Velveteen Rabbit

Last night I read this story to my daughter before bedtime, and the section above stood out to me. For all the trials we've been through in the last nine months, J.J. and I are becoming Real.

I often get frustrated with people who treat J.J. like he is dumb or somehow less capable because of his aphasia. My husband is brilliant, and the fact that he sometimes has trouble finding the words to express his thoughts doesn't make him any less so. I know this, and the people who truly care about us know this...why should it matter what the rest think? They just don't understand, so they don't know that J.J. is Real.

We all have our challenges. J.J.'s struggle happens to be more public than the struggles that some people have to endure. As the Skin Horse said, sometimes being Real hurts.

This is where the rubber meets the road. It's easy to swear to love someone in good times and bad when you've never had to experience those bad times. We've been through the bad times now, though, and it's made our marriage stronger. Are we perfect? No. Is our marriage perfect? No. Do we have trials? Sure. Because we are, and our marriage is, Real.

In sickness and in health

Yesterday we attended a friend's wedding, the first we've been to since J.J.'s stroke. I was completely caught by surprise by the wave of grief I felt while listening to the vows, the same ones I recited so long ago. I wonder what that Erin would have said had she known how soon "in sickness" would come to roost?

I finally said it.

Friday was a very interesting day. I left work early since my ear and head were throbbing. Since the rest of the family has had the flu, I figured I was coming down with it as well. By the time I got home, the pain had spread into my teeth. For anyone who has never had the experience, let me tell you that tooth pain is some of the most intense ever. I took a leftover Vicodin from my last root canal and it didn't even take the edge off. Around 8:00 p.m., I felt something odd in my mouth, reached in and pulled out a chunk of my lower right wisdom tooth. Suddenly the pain dulled. Weird. So to make a long story short, I'll be having oral surgery on Wednesday to have this tooth removed (my dentist wouldn't do it himself since on x-ray it appears that the root of this tooth may be wrapped around the underlying bone. From the intense jaw pain I had on Friday, I think he might be right).

Anyway, while I was doped up on Vicodin and couldn't sleep, J.J. and I sat in bed and talked. Well, I talked--he mostly listened. And I finally verbalized something that I've been thinking for a while; that I doubt J.J.'s recovery will be complete. That I think that although he'll continue to fine tune his speech, that he'll always struggle with some aphasia. That his writing and reading will most likely continue to improve, but I think his speech will always be halting and slow.

J.J. agreed with me, said he's known this for a while but didn't think I wanted to hear it. And he's probably right.

I'm not happy about this, but it's time to face facts. Besides, it could have been so much worse. After seeing how some of the survivors we've met have lost so much function, I can't get too upset about J.J. He's at home, walking up and down stairs, driving, working, even writing again.

Life goes on.

Green light to FEEL

As you know, I was in Chicago this week for a business trip, attending a meeting that I attend every year. It's not a huge gathering (about 50 people) and most of us attend each year, so we've gotten to know each other fairly well. So on Friday, after the conclusion of the meeting, when a small group of us were sitting around waiting for the time when we would depart to head to the airport, train station or bus terminal, we spent some time catching up.

First of all, let me assure you that I will never get used to uttering the words, "My husband had a stroke." Each time I say it I get a physical sensation that must be very similar to what it feels like to be kicked in the chest by a horse. Because every time I say it, I remember the first time I said it, in a phone call to my mother from the ER that night. I remember the first time it was said to me, by the ER physician.  But when I'm asked how things have been going, am I to gloss over this? When I'm asked why I'm back in school and what I'm studying, do I let people just guess why I'm suddenly drawn toward speech/language pathology?

Anyway, as I discussed what it's been like over these last eight months, I did it with dry eyes. At least until one of the women I was talking with turned to me and said, "You're allowed to feel, you know." Then I lost it. Because it's never going to stop hurting that this happened. I love my husband, and I'll love him no matter what, but that doesn't mean I'll stop missing the man he used to be. And just because he doesn't have deficits like some survivors doesn't mean that he has no deficits at all. I'm still sad, confused, angry and hurt. And it was nice to have someone not treat me like I should forget about it and move on. It's getting easier, but it's never going to be easy.

So there you have it. For anyone who reads these entries looking for some indication of when the pain stops, I can assure you that 8 months and 10 days later, it's still fresh.

Postcards from Chicago

I'm typing this from a hotel room in Chicago, where I'm attending a work-related conference. This is the first time I've been away from J.J. overnight since the stroke, and I never dreamed it would be this hard. I've been passing the hours by writing postcards to my family----

Eli,
Greetings from the Windy City, which was not at all windy today. It was just as warm and sunny here as it was at home. I'm missing you guys a lot, but I'm still having fun. I just had awesome Chicago-style pizza! I'll be home soon--be good for your dad in the meantime! Love, Mom

Leah,
Well, I'm here in Chicago and it's been a really nice day, which is a big change from how it is normally when I'm here! All I can think about is how much I want to be home with you guys--and I will be, in two more sleeps! Love, Mommy

My love,
Tonight I'll go to sleep without you beside me. Tomorrow I'll wake up and you still won't be here. And I'll miss you, of course--that goes without saying. But mostly, I'll miss US; the feeling of finally letting out the breath I didn't know I'd been holding all day as soon as I'm in your arms. Can't wait to breathe again------ E

Guess who the two newest writers for the Stroke Network newsletter are?

(I'm pretty sure you know, right?)

Here's our audition piece. Parts of it I stole from one of my blog entries a while ago, but lots of it is new. And it's the first real Team Erin AND J.J. entry to this blog...

Nearly 13 years ago, I met a man unlike any other I had ever known. Possessed of a sarcastic wit that almost matched my own, J.J. and I talked for over 10 hours on our first date. Since ours was a long-distance romance at first, we spoke on the phone for hours each night. I never grew tired of learning more about this man. I loved how deep, philosophical and wide-ranging those conversations were. When I married him, I looked forward to years filled with discussions, banter, debate and repartee. And for the better part of a decade after our wedding, that’s what we experienced.

We had a wonderful life. It wasn’t storybook, but it was ours and it was perfect for us.

On February 15, 2009, our lives changed in an instant when J.J. suffered a single ischemic left MCA stroke. When I arrived at the hospital that night, J.J. was paralyzed on the right side of his body. He also was completely silent, something that had happened on only a handful of occasions before.

After a week in the hospital, another week at a rehabilitation hospital and months of therapy, J.J. has very few physical challenges following his stroke. Those long-winded diatribes, however, are no more. J.J. still suffers from aphasia.

At first, this was devastating to me. I fell in love with this man for his brain. I knew he was still in there, but if he couldn’t communicate with me, how could I continue to be his wife out of more than just duty? How could I love this shell of the man I had loved so passionately?

From where I am, over seven months later, I can tell you that I now love this man even more than I did before the stroke. This one. I don't mean the one I fell in love with, the one I kissed at the altar on our wedding day, the one whose arms were the first to hold our son, the one I've woken up next to every morning for so many years I'm completely broken of the habit of trying to sleep in the middle of the bed. Although I love him as well.

I mean the man who lost most of his ability to produce language but who never forgot how to tell me he loved me. The man who has started eating salad regularly to make sure he never has this problem again. The man who spends hours a day trying to read even though it's so hard for him it's no longer enjoyable. The man who does whatever he can to make my day easier in whatever way he can. The man who still cuddles his children every night before bed. The man who attempts to look over our son's homework even though he most often has to hand it over to me to check. The man who never stops trying, never stops believing, and never gives up.

The J.J. I knew is gone forever, since whatever his recovery looks like, this experience will have changed him. But it's changed me too. And this new Erin is ready to love the new J.J. completely. Whoever he is, I know some things won't change. That gentle soul is still the soul of my best friend.

There’s so much there for me to love.

**********

I love my wife. I loved her in the instant I met her, and I love her more everyday. I love her with all my soul and body. I can’t imagine my life without her. Nor would I ever want to.

I had my stroke 7 months ago. It’s not that long ago, but many days it seems like it’s been forever.

I always knew that my wife was strong. I’ve watched her do some pretty amazing things, like finishing the coursework for her Masters degree while she was working full-time, caring for our then three year old son and pregnant with our daughter. But I never guessed how much strength she had. After my stroke, I had to watch her keep the kids going, and her job, and everything else we used to do. Each morning she would get the kids off to school and she would work for five hours in her office. She’d leave work in time to join me at the hospital for lunch, then she would observe my therapy sessions until it was time to get the kids again. She kept them in all their activities, swim lessons, guitar lessons, taekwondo classes. And she brought them to visit me everyday. After the kids were in bed, the house was clean and the laundry was done, she worked from home for another three hours each night. She didn’t sleep much, but she got it done. And she never complained.

For the first month and a half I was home, she still had to keep everything going. I had trouble walking still. I could make dinner, but the stairs were a problem. I couldn’t get the kids baths, or drive. So I was home, but all that meant was that it was easier to see me.

God only knows why she still loves me. I don’t know why.

What I do know is that she is the best in the world. She’s a great Mother, Wife, Sister, and Daughter. She’s good at her job, and she wants to learn a completely new job, which is Speech Therapy. I know she’ll excel at this too.

For nearly 13 years now, I’ve known her. She is an amazing woman who can do anything she wants. For nearly 13 years now, I’ve loved her for that. This stroke has only provided me with more reasons to love her.

Massive Update

I'm sorry that I'm such a slacker when it comes to this blog lately. It's no excuse, but my whole life is super crazy right now. I'm either working, studying, preparing to teach, messing with the kids, being a stroke wife or feeling guilty that I'm not doing one of the above.

But anyway, here's what's going on...

1. J.J. and I are both staying home from work today, J.J. because his vision is weird and he has a headache (which I assume means his blood pressure is back up) and me because I'm going to be a nervous wreck if I can't keep an eye on him. Like it or not, every time this man so much as sneezes for the next few years, he's going to have me checking on him. But my allergies are acting up (again), so I could probably use the extra rest.

2. Leah is 5! I've got her photo montage done, and I'll try to post it soon. Her birthday was Thursday, which of course is the night I teach so I barely saw her. We did her presents on Wednesday evening and took her to dinner on Friday evening. I think she was pretty impressed that her birthday went on for days!

3. We started the American Heart Association eating plan this morning. Basically, we're trying not to eat as much red meat and processed foods and trying to eat more fruits, veggies and healthy fats (like olive oil and nuts). We'll see how this goes.

4. J.J. and I went to a stroke conference in Chicago last weekend. It was put on by a group called Stroke Survivors Empowering Each Other that is essentially a statewide (Illinois) support group. I think we were the people who traveled the furthest to be there. It was nice to be in a room full of people who could relate to some of what we're going through. We heard a great presentation about integrative medicine that has us looking at some new therapies to try for J.J. And at the end of the day, we were asked to tell our story to the group! I did most of the talking (naturally!) I think it went pretty well--there was a woman there who is writing a book about stroke survivors and their families, and she's asked us to include our story. We'll see.

One of the worst things about going to things like this is seeing other stroke survivors' reactions to J.J. J.J. came out of his stroke in very good shape. Even though he has some deficits, they're nothing like what many survivors have to deal with. We sat with a couple at lunch; the wife had almost the same stroke as J.J., but hers was almost a year and a half ago. She's lost most of the use of her right hand (it's all contracted) and her speech is about how J.J.'s was a week or so after his stroke. At one point she laboriously said to J.J., "How...is...your...stroke?", meaning, how did you recover like this? You could see the naked envy all over her face. It's hard to watch.

5. I haven't updated about the Start! Heart Walk! We participated as a family, all wearing our shirts to support J.J. We got lost so we didn't get there until right before the walk started, and they tore everything down while we were gone walking so we didn't get to see much of the exhibitors. The walk was nice, though. It was a beautiful day and the kids only had to sit down to rest once while we were walking. At the finish line, we were provided with bottled water and all the fruit we wanted to eat. The kids each had a couple of apples. J.J. ate an apple and a banana. I had two oranges (which were AMAZING--I had forgotten how much I love oranges!). All in all, it was just a great day to celebrate how far J.J. has come. Thanks again to all the people who supported Team Erin and J.J. in the walk!

Alright, I think that's all the noteworthy news I have. Time to check on my man!

You Betcha

I've noticed that many stroke survivors with aphasia have been left with one phrase that is much easier for them to say than anything else. J.J.'s is, "you betcha".

Are you going to pick up the kids from school today? You betcha. Does this dress look okay on me? You betcha. Does spaghetti sound good for dinner? You betcha.

This is so amusing to me, since this is not a phrase J.J. was prone to using before his stroke. But hey, at least it's useful. He could have been left with something like, "paper or plastic" or "Gary Player golf" or "act fast and I'll double your order".

Am I constantly puzzled, amazed and baffled by this stroke recovery stuff? You betcha.

This is what happens when Mom brings home a whole car full of photography equipment...

I have no idea why these are so pixelated. If you click to make them bigger, they display better. Anyway, this was just a little impromptu photography session in our driveway...

Leah

Leah was four years and four months old when J.J. had his stroke. She'll never remember her Daddy being different than he is right now. She won't remember a time when his voice sounded smooth as velvet, a time when he could sing silly songs to her, a time when he told intricate bedtime stories.

I should feel sorry for her. That J.J. was amazing, and it's so not fair that this happened while she was so young.

But I don't. I'm actually a little jealous of her. She doesn't know what she's missing, so she doesn't miss it.

But I do.

New Routines

Actually, these are old routines. We spent nearly nine years of our lives as a dual-income family with kids, so why does it suddenly seem so hard? Every morning starts off with me getting up and getting breakfast going while J.J. takes his shower. Then we get Leah up and dressed, and J.J. finishes getting ready while I do Leah's hair and help her brush her teeth. The two of them leave at a few minutes after 6:00 a.m. J.J. drops her at day care by 6:30 a.m. on his way to make it to work by 7:00. In the meantime, Eli gets up, eats breakfast and packs his lunch. At some point, I yell down at him, "Ten after!". Meaning that once again today I'm harboring the delusion that he and I will both be ready, with packed lunches, bookbags and all, and will walk out the door at 7:10 to go catch his bus. Not likely, but hey, a girl can dream. If you're keeping track, I've got about 40 minutes to shower, dry hair, straighten hair, apply makeup, get dressed and get gone. I've mentioned that I'm a woman, right? Ain't gonna happen. Ever. So I start every morning in a state of blind panic.

Anyway, I get Eli to the bus stop (about 15 minutes away from our house, and not that far from his school, but that extra hour he spends on the bus between me dropping him off and the time that he's allowed to arrive at school makes the difference between me arriving quasi-on time for work and becoming unemployed) and sprint to work. Or maybe not, since here lately I've been working more and more late nights. Oh, and did I mention that in addition to my full-time job, I'm teaching for Ivy Tech (the local community college, for those who aren't aware)? Or that I'm taking two classes myself this semester?

My life is a blur. I do nothing but work, sleep and study.

So see, things are back to normal.

J.J. is enjoying being back to work, even if his enjoyment of his job is a little different than it used to be. J.J. loved running the help desk. He was good at what he did and everyone knew it. Since speaking is an integral part of help desk work, he's not doing that anymore. And some of the spark has left his eyes when he talks about what he does.

Hopefully his speech will recover enough to give him a chance to get back to that work soon.

Let's see, I haven't given you a progress report lately, huh? Physically J.J.'s still doing great. He's lost 148 lbs. and looks like a completely different person. A very young, hot person :) The only lasting physical impact from his stroke is some numbness in his fingers that comes and goes, mostly when he's extremely tired. His speech is also still improving, to the point that sometimes I forget all about his stroke for a couple of minutes. Then I call his work number and get his voicemail greeting, which still features the pre-stroke J.J., and everything comes rushing back. I seriously cried the first time I heard it after he went back to work. But anyway, he's needing my help less and less. He's not having any problems ordering at restaurants or any of those challenges we had at first. Although we still get quite the rousing game of Charades going once in a while. And let me tell you, my Charades prowess is unrivaled!

The Start! Heart Walk is next Saturday, September 19. Thank you, thank you, thank you to those who have already donated or signed up to walk with us. If you don't know what I'm talking about, the link is a couple of posts down.

J.J.'s birthday was Sunday. He's now 34, and we're hoping it's better than 33. I have much more to say about this, but that's a different post...

Tomorrow

We'll wake up at 5:15 a.m., and I won't automatically get the first shower. J.J. and Leah will have to leave the house by 6:00. I'll be driving Eli to the bus stop and Zeke (the cat) will have to be closed up in the laundry room so he doesn't claw the furniture like he tends to do when no one is home.

Because no one will be home.

Because six months and nine days after the date that I will never, ever forget, J.J. will be returning to work tomorrow.

Start! Heart Walk

As you all probably know, our lives were forever changed on Sunday, February 15, 2009 when my 33 year old husband collapsed on our stairs on his way to put our daughter to bed. Two hours later, he was diagnosed as having had a single ischemic left MCA stroke. The next day, he was diagnosed with Congestive Heart Failure.

After arriving at the hospital paralyzed on the right side of his body and completely unable to speak, J.J. has made great strides in his recovery. His physical recovery is almost total, his heart function has now returned to the normal range and his speech is better every day. He'll hopefully be returning to work on Monday, August 24, six months and nine days after his stroke.

Stroke is the number 3 killer in the United States and the number 1 cause of permanent disability. This is also not just an issue that impacts the elderly--my husband is living proof.

Our whole family will be walking in the Start! Heart Walk sponsored by the American Heart Association on Saturday, September 19 under the team name Team Erin and J.J. There will be a separate 1 mile walk for stroke survivors that J.J. will also complete as part of this event.

Please consider supporting us with your well wishes, by joining our team and walking with us or by making a financial donation to support the cause of stroke research and awareness. J.J.'s team page can be found at http://heartwalk.kintera.org/indy/jj and my personal team page can be found at http://heartwalk.kintera.org/indy/erin. Doesn't matter which one you navigate to--they are both hooked into Team Erin and J.J.

Thanks for your consideration and support!

Countdown's On!

J.J.'s been busy the last few days bustling about trying to get ready to go back to work. Yesterday, for instance, he spent almost three hours talking to his voc. rehab. counselor at Easter Seals Crossroads, visited our family doctor and had some various bloodwork done. Our doctor still hasn't signed off on J.J.'s return to work (she wanted to get the results of the bloodwork first) but all indications are that when she receives the results tomorrow morning, J.J. will receive the official blessing to go to the office on Monday morning.

J.J. seems to think that after having been off work for six months and having part of his brain die, he'll be able to just jump back into the normal 40 hour work week immediately. I'm a little skeptical, but hey, maybe he'll be okay. We'll just take it moment by moment, I guess.

I'm so incredibly nervous about J.J. going back to work. J.J. is very smart. This has always been a big part of his identity, and he's still just as intelligent as he's ever been. He sometimes has trouble finding words, and I'm afraid that people will treat him like he is slow or won't want to deal with him in the workplace because of this. I guess it's the same sort of panic I'd feel if I were sending my child into a situation where I thought they might be bullied.

I'll update when we have the official all clear for Monday!

And so, for the second time that night...

I watched strangers bustle around my husband, preparing to wheel him away from me. I stood quietly in the far corner while all the wires and tubes that connected him to the machinery in the room were gathered up and matter-of-factly plopped on his chest. One nurse released the brakes on his bed, while another took hold of the bar at the back and steered him through the doorway. Once they were clear, I moved to the threshold of that room and watched them move down the hallway and around a corner. When they were out of sight, I became aware that I wasn't alone; a nurse was collecting J.J.'s belongings from around the room. As she began to fold his pants, a scrap of paper fluttered out of the fabric and seemed to hang suspended in mid-air. I clutched it before it could hit the floor and turned it over. It was the receipt from the previous night's takeout dinner.

J.J. is a packrat of the highest order. I can't begin to count the number of times I've picked up receipts just like this one from his desk, from the kitchen counter, from the bathroom sink and unceremoniously tossed them in the garbage. But on this night, I tucked this receipt into my own wallet. As I did, I thought, "Is this the last shred of the life we used to have?"

J.J. doesn't remember very much from the first couple of weeks after his stroke. He remembers next to nothing about the first few days. I've been trying to give him the blow-by-blow of the first 48 hours, leading to recollections like this one.

In many ways we've come so far since that night. In other ways, I'm still there, waiting for the other shoe to drop. Over a third of stroke survivors have another stroke within two years. One in three. Is it just me, or is this just a staggering percentage to consider?

I'm so proud of J.J. He's done so much to make sure this never happens again, and that he'll be here with me for as long as possible. But it's so hard not to worry when...

51%

This is J.J.'s ejection fraction as of this afternoon, as compared to 23% the day after his stroke. With this new reading, J.J. is no longer is classified as having unstable congestive heart failure. His reading is considered to be on the low end of the normal range.

The cardiologist was the last medical professional we needed to get to endorse J.J.'s return to work. I think we still need to discuss with the voc. rehab people, but J.J. should be back at work two weeks from Monday (8/24/09).

This is such a non-dramatic milestone, considering all the twists and turns we've encountered on this road. But good news is always welcome.

Brett Dennen

For Christmas 2008, my sister gave J.J. and me (doesn't that sound like the most awkward grammar ever? But I think it's right!) tickets to see a concert by Brett Dennen, an artist of whom I had never heard. The concert was to take place on February 27, the last day of operation of a venue called the Music Mill on the northside of Indianapolis; this was one of our favorite concert venues. Katie also included a copy of a Brett Dennen CD ("So Much More", for anyone who cares) which sat, forgotten, on the bar in the kitchen for well over a month.

Finally, a little over a week before J.J.'s stroke, I decided we should start listening to the CD in preparation to attend the show. One Saturday as we were going to do our grocery shopping, I popped it in to the CD player in my car. And out came the most low-key, mellow music imaginable. Way different than the raucous, thumping beats that usually can be heard in my car. So while we were listening to it, J.J. and I did what we did best--mocked it mericilessly.

"Is Nyquil one of the major sponsors of his tour?" J.J. wondered. I contributed that the drink special at this concert must be warm milk. We both came to consensus that Brett's backup band must consist of the sheep from the Serta commercials and that instead of throwing guitar picks into the audience, pillows were the obvious choice.

It goes without saying that we didn't attend that concert on February 27, 12 days after J.J.'s stroke. Katie did, and she said it was a terrific show.

A few weeks ago, I was cleaning out my car and rediscovered this CD. And I don't know if it's because my life is so much different that I'm yearning for something more mellow, but I'm finding that I really enjoy the music. It's in heavy rotation in my car now.

Yesterday while we were out running errands, J.J. asked me who was singing on the CD. I answered, "Brett Dennen". He said, "It's...nice".

I'm so grateful that I still have J.J. in my life. But I really, really do miss his sense of humor.

Sometimes...

Out of nowhere, our situation will hit me all over again. As it did this morning at work, when this song came up on my MP3 player...

I'll sing it one last time for you
Then we really have to go
You've been the only thing that's right
In all I've done

And I can barely look at you
But every single time I do
I know we'll make it anywhere
Away from here

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I'll be right beside you dear

Louder louder
And we'll run for our lives
I can hardly speak I understand
Why you can't raise your voice to say

To think I might not see those eyes
Makes it so hard not to cry
And as we say our long goodbye
I nearly do

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I'll be right beside you dear

Louder louder
And we'll run for our lives
I can hardly speak I understand
Why you can't raise your voice to say

Slower slower
We don't have time for that
All I want is to find an easier way
To get out of our little heads

Have heart my dear
We're bound to be afraid
Even if it's just for a few days
Making up for all this mess

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I'll be right beside you dear
(Snow Patrol, "Run")

The chorus really gets me. Since I can't hear J.J.'s voice--at least not the voice I associate as being J.J.'s--and may never hear it again...

Stroke Box

Goal for the evening--create some kind of order in this box, which is all the paperwork dealing with J.J.'s stroke. Been putting it off. Tired of dealing with stroke stuff. But can't NOT do this stuff anymore.

Erin's life goal--confront it, head on.

Happiness

I sincerely hope that none of you ever find yourself facing a situation like we've had over the last five months and change. But if you do, I'd like to let you in on a little secret.

In the first few days after J.J.'s stroke, I was too numb to feel much of anything. When I did notice an emotion, it was usually sadness or fear. I did enjoy J.J.'s successes and felt a sense of triumph when he accomplished something that we wondered if he'd ever do again. As time went on, anger crept into my emotional repertoire, as well as gratitude.

The emotion I didn't feel, though, was happiness. I've been accused of being an eternal optimist, and this is a title I've worn with pride. It doesn't take much to get me laughing; in fact, it's often the case that I get laughing and can't stop. But for weeks after J.J.'s stroke, I wondered if I'd ever feel anything approaching happiness again.

From where I am today, I can reassure you that, if you do find yourself in my shoes, the happiness comes back. It doesn't happen overnight, and it's so gradual that you might not notice it for a very long time. The first few times I laughed after J.J.'s stroke, I often ended up crying as well. Expect that your emotions will run close to the surface and will be all in a muddle for a long time. Also, don't be afraid to laugh at your situation. "Gallows humor" has pulled me through more than once.

Today, it has been 156 days since our lives changed forever. And I can tell you that we've never been happier, both together and separately.

It's worth the wait.

Lost at Sea (Or, Why J.J. Doesn't Wear a Wedding Ring)

I just lost a whole post. So let me try this again...

Two weeks before we got married, J.J. and I bought our wedding rings. Matching plain gold bands with a little ring of etching at the top and bottom, they were very simple and inexpensive. But they were ours, and they showed the world that we were married, and we loved them. I still have mine, although it's been stored away for safe keeping. J.J.'s, on the other hand--well, let's just say that it's probably somewhere in our house. He remembers taking it off one night and placing it on his nightstand. When he went to get it the next morning, it was gone. It's been six years and we still haven't found it.

Over the years J.J. has discussed getting another wedding ring, but he's never found anything that was exactly what he wanted. Until we were in Ketchikan, AK. 14k yellow gold and black coral, this band was significantly more expensive than his first. Beautiful, strong and distinctive, it looked incredible on his finger.

For the next eighteen hours.

You see, it was really about a full size too big for J.J. when we picked it up from having it sized, but he thought it would be okay. He remembers having it on when we went to bed that night. He got up at 3:30 a.m. to go watch the sun rise (remember, in Alaska at this time of year, sunrise is realy early). He traveled to the top of the ship, realized it was raining, and headed back to our room. Which is where he discovered that his ring was missing.

We turned that cabin inside out looking for it before J.J. went to the front desk to report that it was missing. They sent Security to "help us look for it". Security all but strip searched us, making us turn out every pocket. They pawed through my purse, opened every drawer, even went through our dirty clothes and trash. Apparently it's fairly common for people to report a "just purchased" item of jewelry missing to commit insurance fraud. Whatever the case may be, it was a little much to take at 5:30 a.m. By the time Security left, I was furious with J.J. and with the whole situation.

Eventually I realized, so what? Yes, I would rather have had him not lose his ring, but I still have my husband and we're still married. That's what's important. Who knows, maybe his original ring will still turn up. If not, well, we can still buy another ring someday. I can almost guarantee that he'll get it sized right this time!

So in case you ever wondered, that's why J.J. doesn't wear a wedding ring. Feel free to tease him about it. Lord knows I do!

Dr. Acula's Back!

Dr. Acula is finally back from his disability leave (apparently, he hurt his leg badly in an accident. Don't know any more about it than that), so J.J. finally got his three month checkup today. Yes, I know it will have been five months since the stroke in a few hours. But oh well.

Since I'm still trying desperately to get everything in my life caught up from being on vacation, here's the short version, most important points first:

1. J.J. is recovering much better than anyone could have dared hope. He is already estimated to have 80% of his language ability back. And considering he was entirely nonverbal there for a while, this is awesome news.
2. His language will continue to improve and should actually see the greatest period of refinement within the next three months. His physical recovery is probably about complete; since the only physical impact J.J. has left is an intermittent numbness along the sides of the fingers on his right hand, this is not a gigantic concern for us.
3. J.J. will, barring any further issues, be released to go back to work on August 24. He still has to receive clearance from the cardiologist, but the neurologist was the biggest obstacle.
4. J.J. has lost another 22 lbs. this month, bringing his grand total weight loss to eleventy billion pounds or so.
5. Dr. Acula still wants to see J.J. lose another 75 lbs.
6. At the rate J.J.'s going, this should be accomplished around next Tuesday afternoon.
7. I'm just a smidge bitter :)
8. Dr. Acula was scarily pleasant.

Oh yeah, everything else is going well here. I'll update more very soon (hopefully!)

Back

We're home from Alaska. Hit our door at about 11:00 a.m. yesterday, and, as we hadn't slept the night before, spent much of the day asleep. Today's been a whirlwind of activity getting caught up on everything, getting the kids back, getting Eli's 4-H poster finished and submitted and going to Leah's first swimming lesson of the new session. Tomorrow I will try to give you a full update (complete with pictures, even).

Miracle

J.J. is under consideration for a research study out of Northwestern in Chicago that will, among other things, provide him with more speech therapy. He'll receive a hour and a half of therapy a day using computer based technology for eight weeks, as well as in-person sessions twice a week during this time.

To prove that J.J. meets the diagnostic criteria, we had to get his medical records. We got them in last night but I worked 13 hours yesterday and didn't get the chance to review them until a few minutes ago.

His CT scan report from the day after the stroke is alarming. J.J.'s entire speech center was decimated by the stroke (I won't go into the language they used, but that's what it means).

He shouldn't be able to speak.

But he does. And he speaks better every day. Further back in the records, there's even notes from doctors stating that his speech belies the damage shown on the scans. Obviously, they have no more idea why J.J. has had such a positive outcome than we do.

I have two things to say about this: 1) Brain plasticity is a wonderful thing. From what we've been told, one of the reasons J.J. has been able to recover so much of his speech so quickly is because he studied so many different languages, which has caused more neural pathways to develop that in most people's brains. When J.J. starts this research study we'll know more (the first thing he'll do is a functional MRI) but the theory is that the area directly opposite the area that was destroyed (i.e., in his right hemisphere instead of the dead left hemisphere area) is picking up the slack. Anyway, it's amazing. 2) I may not know how this happened, but I know who does. I see this as just more evidence that God is in control here. My husband is a miracle of medical science.

To interpret the rest of the report, I need to figure out what "effacement of the left temporal horn" is. I have an idea (I actually think this is just more about where the speech areas were impacted, actually), but don't have the time to do the digging right now.

With that, I'm off to INHP's Community Breakfast...

Alright, alright!

Some friends on Facebook talked me into taking a picture of the hair. So here it is...

This was before J.J. washed it. Now that it's clean, it looks significantly better, I'm happy to report. So maybe it's time to put these scissors down, huh? :)

So...

The haircut pics are going to have to wait. My husband looks like some 20 year old goth/punk kid. All he needs is the trench coat, the combat boots and the t-shirt with some role playing game logo on it and he'd look like he did when we first started dating.

I think once it's properly washed and has some styling product in it, it will resemble something that belongs on the head of a man who's crowding 34. Otherwise, it's back to the salon. At least this cut was free, since J.J. donated a foot of hair to Locks of Love...

The haircut

is occurring right now :( I'm going to miss all of J.J.'s long hair.

You'd better bet there will be pictures later!

Stroker is an effective weapon!

So I got J.J. to call Citibank to plead our case. 10 minutes later, the late fee's waived, my APR is back down to a reasonable level and my credit report is once again safe. I know it's vaugely manipulative, but I'll take what I can get.

(Oh, and in case you're wondering, Stroker is my new nickname for J.J. Mostly when he's doing something particularly strokey)

So, I got suckered into working late on Thursday night at work, which essentially means I have tonight and tomorrow night to clean the house, do the laundry, mow the lawn, pack us and both kids, finish assembling Eli's 4-H poster, etc., etc. We have to be at the airport at about 3:00 a.m. on Saturday, so Friday night's pretty shot. Oh, and did I mention that it's VBS week at church? So the kids don't even get home until 9:00 each night this week? AND that the grant proposal that typically takes us a month or so to get put together came out last Friday and is due this Friday?

It's all part of the universe making sure I'm good and ready for that vacation by the time I get to it :)

Short Term Memory Loss

I'm so upset right now I can barely stand it. J.J. has been stubbornly holding on to paying the few bills he's always been in charge of paying. One is my Citibank card that I use for work expenses (and which, recently, I used to cover my root canal). So there's not a huge balance on it, and the payment's only like $20 per month. Well, due to the short term memory loss, J.J. forgot to pay it this month, and now I've incurred late fees, a ding on my formerly pristine credit report and my interest rate has been jacked up to 30%!!! I know I should have been monitoring J.J., but damn. I can't keep all the balls in the air all the time.

Worst of all is the cascade effect this will have as other creditors find out what's happened. I'm anticipating a movement toward high interest rates all around.

And I'm a financial planner, mind you. Don't you want to come work with me now????

I'm so ticked at J.J., both for not admitting he needed help and for not taking care of himself in the first place.

Stroke. It's the gift that keeps on giving.

18 Weeks

In an hour and a half or so, J.J. will be 18 weeks out from his stroke. It's getting far enough away that I don't always remember the weekly anniversaries. Wonder when I'll start getting through the 15th of each month without thinking about it as well?

This week has been kind of tumultuous. J.J. had his neuropsychologist appointment on Thursday, where he was put through eight hours of strenuous cognitive testing to determine what deficits he has that will need to be compensated for to get him back to work. We won't have results for a couple of weeks. But the process really messed up J.J.'s speech Thursday and Friday. It was getting better yesterday, but he's been overdoing it on the knee and his speech is bad again today. In fact, I've had to tell him to stop talking a couple of times today because he wasn't making any sense and because it was such slow going that I wasn't getting anything done. And because, God help me, but everytime he starts doing the "ummmm....uhhhhhh....mmmmm..." thing while he's trying to think of a word, I want to throw myself off the proverbial cliff.

It's really strange to be in this position. It's been long enough and J.J. is doing better enough that I think most of the world has forgotten about us. But the fight is far from finished, and right now, I think we're both about out of knots to tie in the rope to help us hold on. We leave for our vacation in less than six days, so hopefully that will rejuvenate us enough to fight another day.

Oh, and did I mention that Leah came down with Hand, Foot and Mouth disease and Eli had what I believe was his first migraine on Friday night? Fun times.

No one has ever needed a vacation more than we do, that's for sure.

Leah's First Pedicure

I've got so much to do this weekend, but so far I've spent it bonding with my children. This morning I took Eli to the Indianapolis Museum of Art on a photography excursion. We shot for about an hour and a half all over the grounds, by which time we were exhausted and hot. We stopped at Dairy Queen on the way home for a little refreshment.

This afternoon, I took Leah to get her very first pedicure, something I've been dreaming of doing with her ever since I found out she was a girl! She loved it--she says the best part of the experience is putting her feet in the water, although the massage chair scored pretty high as well. Here's a few pictures of the experience...

What you can buy for $5

Every morning since the construction at 465 and Washington St. caused me to change my route into work (so, what, three months or so now?) I've passed the same homeless man at the same corner, very near the Childrens Museum. And every day like the rural-raised girl who was never exposed to this sort of thing growing up that I am, I politely look the other way or suddenly become engrossed in my cell phone display or whatever else I can do to avoid making eye contact.

Today, though, I happened to look up as he walked by my car while I was stopped at the light, and I was struck by the depth of the hopelessness in his eyes. He had the same appearance as a dog who has been kicked too many times; watchful, wary, suspicious, downtrodden.

I very rarely carry cash, but I happened to have a $5 bill in my wallet this morning. So I rolled down the window and handed it to him. And he smiled, a little of the tightness around his eyes easing. Then the light changed, and I continued on toward my office and he walked back toward his corner to prepare for the next group of commuters to pull up.

I know all the social arguments why I shouldn't have given him the money. I know that I might be contributing to his drug or alcohol problem, etc.

But I didn't really do it for him. I did it for me. How many times do you get to see raw gratitude on someone's face and know that your gesture was appreciated? How many days to you get to go on your way knowing that someone's day was a little easier because of you?

I think $5 was a bargain.

Sigh

It's been a really decent week here. J.J. is recovering really well from his knee surgery and is speaking better and better all the time. I keep encouraging him to go back in to RWA to show people how well he's doing. He keeps saying he will, but hasn't yet. Think he's hoping that the next time he walks in, he'll be coming back to work. And it's not going to be long now. Our family doctor originally told us 8/24, but I wouldn't be surprised if she sends him back before that. I definitely don't think (barring any other mishaps) that it will be any later.

The kids are doing great. We've decided on a new school for Eli for next year. It's a charter school focusing on math and science and he's really pumped about going there. He earned his dark blue belt in taekwondo over the weekend and should make black belt within the next few months. He's accompanying me to my engagement photo shoot tomorrow since he's showing so much interest in photography. He's also been taking Foods through 4-H and is becoming quite the proficient baker. Leah is getting ready to start swimming lessons again and is just generally being the best, cutest, smartest, most independent little girl I could ever want.

So things were going pretty well.

Then I found out that my best friend will be moving in a month to Wisconsin. Won't get into the details (it's not really my story to tell) but it just bites so much. I know it's best for her, but I can't help but wonder about my support system. She's been my backup plan if anything else goes wrong with J.J., like if I need someone to sit with the kids in the middle of the night while I run to the hospital. Now I guess I need a plan B.

Sigh.

Dora the Explorer Live

You know how you know you're a Mommy? You stay home sick because your allergies are so bad your nose is dripping down your face, your head is pounding and your eyes won't stop watering, but you manage to drag yourself to a different state to see Dora the Explorer Live with her number one fan...

Pardon the image quality, I took these with my crappy point-and-shoot ($88 at Walmart three years ago; you can read between the lines to interpret exactly what an advanced machine this is).

The five hours of sleep I got last night are completely worth it when I look at that face. She may not remember in ten years, but I'll remember what a magical night it was for her.

I feel so privileged that God chose me to raise these amazing kids.

Eli's School Picture

I just realized I hadn't posted this yet. Isn't he handsome?

Has it been a week already?

I'm sorry about my infrequent posts, life seems to be getting in the way...

1. J.J.'s come a long way in his recovery from his knee surgery this week and is getting around pretty well. His speech is also almost all the way back to where it was prior to the surgery, thank goodness. He had a follow up appointment with the surgeon's office (the actual surgeon was on vacation) on Tuesday and they are amazed at how well it's doing. No physical therapy, but J.J. is supposed to exercise it to strengthen it.

2. The weight loss continues. I think he's down 111 lbs. since the stroke now. Whatever it is, it's some incredible number and you would think losing it this fast would make him look a little ill, but he looks fabulous. He looks healthier than he has for years.

3. He's going to cut all of his hair off!!!! I'm distressed about this, which is odd because I was never that thrilled with the concept of him having it long to begin with. I've grown to love it and will miss it. He'll probably grow it back out once the med change has kicked in and it stops falling out. Oh joy, I get to go through all the awkward growing out stages again. Sigh.

4. J.J. was supposed to start seeing the vocal specialist today, but yesterday we realized it had been written up to code as speech therapy. J.J. has already maxed out his speech therapy benefit, so I called my good friend Brandon over at Anthem (apparently our account is assigned to him, because when I enter my account info I always get routed to him) to see what to do. Apparently the doctor and/or speech therapist have to file a precert asking for more therapy since this is a different diagnosis than the original condition. So the ENT's office is working on this.

5. It struck me the other day that we really need a Rolodex to keep up with all the cards for J.J.'s health team. He has our family doctor, a neurologist (Dr. Acula), a couple of cardiologists, an orthopedist, an ENT, a dermatologist, a podiatrist, a neuropsychologist, a stroke case manager, a physical therapy team, two different speech therapists, a Vocational Rehab counselor...is that it? I know I'm missing someone. But in any case, that's a whole stinkin' lot of people. No wonder I'm so busy filling out paperwork and manning the calls. It's getting better though, because...

6. J.J. has started filling out most of his own paperwork again now. I've created a couple of lists he can print out for common inquiries (his prescriptions, his physicians, etc.) and he can do all of his demographics and family medical history himself again. It's been really nice to surrender this back to him.

7. We're starting to come up with some systems that work for us to combat J.J.'s memory issues. Our first line of defense is a plethora of post-its. J.J. doesn't go anywhere without a list now, whether it's a grocery list or a list of questions to ask the doctor. We've also purchased the largest planner you've ever seen to record all of our family appointments and any other notes that need to be written in a centralized place (like reminders of what paperwork needs to go to whom, etc.) I think I'm going to invest in a microcassette recorder for J.J. as well, so at the end of each doctor's appointment we can get them to sum up the critical information and recommendations to listen to again. Our family doctor (God love her, she's been so awesome during all of this) has been writing lists of key points and sending them home with J.J., but I think this will make the whole process easier.

Okay, now that all the stroke stuff is out of the way, other stuff that's going on around here:

Monday, Leah had her first sleepover. Her friend Connor came over to spend the night (Connor's brother Gabe, who is Eli's best friend, was also here). They were so cute together. Connor is so considerate of Leah; at one point she wanted a drink, so he got up and got it for her. Nova, you're raising a true little gentleman there.

Of course, it thunderstormed overnight that night, so I was up most of the night in case Connor got scared and needed me. He didn't make a peep of course, but I got about 3 hours of sleep. Actually, that's about what I'm averaging most nights now. It's ridiculous.

Anyway, Gabe has been spending a lot of time here with Eli this summer, which is working out pretty well. With the notable exception of Wednesday afternoon, when we attended J.J.'s stroke support group at the rehab hospital. Oh, don't get me wrong; the boys were excellent. The topic for the lecture part of the group, though, was intimacy after stroke. It was pretty tastefully done, from the little I heard, but I still gathered the boys up and took them out to walk the halls for a while; when we got back, the discussion had moved from physical to emotional intimacy. I actually wouldn't have been too worried about Eli hearing the discussion (we've always discussed a variety of topics with our kids in age-appropriate terms, so he probably wouldn't have even blinked at anything he might have heard), but I'm not Gabe's mother and didn't want to make that decision for her. So there you go.

Eli's been having lots of fun this summer with his various activities, especially his 4-H cooking class. Every week they make a different kind of baked good. This week was brownies--which, in case you didn't know, I love more than anything on this earth, with the probable exception of my husband and children. It was heavenly to come home to a pan of brownies Wednesday night, especially since I had a crummy afternoon at work. A coworker made a stupid joke about J.J. and his work status that left my jaw hanging open. I confronted him about it, he apologized and we've moved on, but it still made me feel a little crappy.

I did FINALLY book our plane tickets this morning. We'll be flying out super early on Saturday, June 27 (like, we have to be at the airport at 3:30 a.m. early). We get to Seattle at 10:30 and the boat leaves at 4:00 p.m. Don't worry, I bought trip insurance on every component of this trip, so we should be okay. Our return flight leaves Seattle at 11:15 p.m. on Saturday, July 4 and gets us home around 10:30 a.m. on Sunday. We connect in Phoenix on the way there and in Atlanta on the way back. I am bummed that we're flying US Airways there (blargh!), but I'm happy about the connection in Phoenix because I've spent quite a bit of time there for business recently and I know Sky Harbor like the back of my hand. When you're incoherent from lack of sleep, it's nice to know the place you're stumbling around! Anyway, now that the tickets are booked, hopefully I can relax a little bit and be excited about the trip!

J.J. has both kids right now at tae kwon do. Eli's testing for his dark blue belt, which is one away from black belt (although he has to also test for his stripes from here on out, so it'll be a little while before he gets the black belt). He feels pretty confident about it, so hopefully in a couple more hours we'll have a different belt on the rack in Eli's room.

Okay, I think that's enough rambling for tonight. I'll try to write again soon, but I make no promises--life is pretty hectic around here!

Irony

Dr. Acula the neurologist is out on short term disability. We didn't find out until we had already gone to his office that he won't be back until July. And part of me kind of wondered how his doctor filled out his paperwork. Was it as soul crushing for him to read over as it was for us?

So the neurologist visit is rescheduled to July 15. But J.J. did meet with his new cardiologist today. I'm already liking this guy, since he admitted that J.J.'s previous cardiologist was a complete moron. Anyway, he tweaked J.J.'s medication a little more (mostly dosages and switching from regular to extended release on one medication) and wants to see him back in a couple of weeks once the meds have kicked in to run some more tests. We're starting with an EKG and a doppler and progressing from there as needed. Oh, and J.J. has lost 7 lbs. since Monday. Freak. It took me over a year to lose 100 lbs., so I'm incredibly jealous. Not jealous enough to have a stroke and explore the wonders of this diet plan for myself, though...

I did book the cruise, by the way. We depart Seattle on June 27. Well, assuming we get there. I still haven't booked airfare. I'm gambling that prices may come down a little as we get closer. I'm actually even toying with the idea of renting a car and driving to Denver to catch the flight from there, since it would save us about $300 and Denver's really only about a 12 hour drive. Not sure I'm that ambitious, though...

Now that you know everything I know, I'm going to bed. When I wake up, it will be 22 days until our trip!

Vacation

J.J. and I have decided to take a real vacation this year, the first one since we got married, actually. Yes, I know he's on disability and isn't making his full pay, but we've got savings set aside and I absolutely need a break! We have identified a spectacular deal on a 7 night Alaskan cruise, which has been near the top of our "must do" list for a very long time. It even leaves on July 3, which cuts one day off the time I'd have to miss from work! The problem? Airfare to/from Seattle (the departure/arrival port) is almost as much as the entire cruise! Does anyone know of any discount sites or have any recommendations on how we can do this more inexpensively? I'm tempted to just do it anyway, but it really is more than I feel comfortable with...

Sigh. I'll let you know what we figure out.

My life

So this is kind of a selfish post, but I need to reason this out, and where better than in public for anyone who happens by to see?

I'm a believer in the power of visualization, not so much in that creepy "The Secret" kind of way (apologies to any of you who are followers, but I can't get past a couple of key points) but mostly because I think you need to be able to picture what you want to figure out how to get there. I totally feel that if I can imagine it, I should be able to have it. Nobody's stopping me except me.

So if that's all it takes, what do I want from my life?

Of course, the first and most important thing for me is that my family is well and together. I am raising two incredible human beings who make me proud to be their mother and who will make this world a better place. I want to continue to instill in them the confidence that comes from knowing that you are loved and that your parents love each other. I'm going to encourage their dreams and to teach them the importance of doing what you know is right, spending your time in ways that make you happy and remembering to be thankful for what you have. I know I can't protect my children from all the bad in this world, nor would I want to. They will need to endure struggles so they can discover who they are and can identify that they have strength beyond what they ever imagined. But I hope that they will find special partners to accompany them on their life journeys, to share their burdens and keep them laughing, and mostly importantly to GIVE ME GRANDCHILDREN! (I've listened to my parents enough to know that that's where the payoff in this parenting business occurs!)

My husband is going to continue to be the man I'm in love with, and we are going to continue to have adventures together and to discover new things about each other every day and to be so cute together that we inspire spontaneous puking episodes from many we encounter and envy from the rest. Now that we know what's wrong with J.J., there's no reason he can't live to be an old man hanging out in a rocker on the front porch with me (notice that I didn't reference myself getting old--J.J. is almost three years older, so I'll continue to be young even as he gets old! :))

I'm also going to have made peace with this body and will have started treating it much better, in the way a creation of God's hands deserves to be maintained. I'll exercise regularly and eat right and sleep more than only sporadically. I'll also control my stress better, because in the long run, what do I really have to be stressed about?

I'm going to be doing work that I love. I love what I do right now, but I'm not entirely sure that it's my life's purpose. I'm going to figure out what that purpose is and I'm going to pursue it. I do know that it will be in the helping professions, most likely in nonprofit like what I do now (it's really hard to return to Corporate America after you've felt what life on this side is like). Will it be at INHP? Don't know. Will it be with our new nonprofit organization? Right now I think it's a good possibility, but I still am not sure. I do know that I have the knowledge and skills to be successful in whatever I choose to do, so I'm going to enjoy the journey to that point.

I'm going to return to school. Some of you know (and heck, I may have blogged about this, can't remember and don't care to look it up) that I was accepted into a Ph.D. program and have tenatively scheduled to begin in December. Now that I've had more time to think about it, I'm not entirely sure I'm in the right program--luckily I've got time to figure this out now and not when I'm deep into the program! Whatever the field, I know I'll someday earn my doctoral degree. It's kind of a life goal to prove to myself that I can.

I could go on for hours describing the life I'm going to have (and can I just say that this is amazingly empowering and liberating? Try it for yourself, you won't be sorry!) but the rest is merely details. I will have enough money to be comfortable and to be able to enjoy life without having so much that I lose sight of the value of each dollar. I will have many opportunities to assist others. I will encounter those who are meant to teach me lessons in life, and I will never stop learning. I will not try to be what I'm not. I will not focus on my weaknesses but will instead choose to build upon my strengths. I will walk the walk and talk the talk. And at the end of my life, I will know I've done my best.

It's been an amazing life already. It's going to keep being an amazing life. Not in spite of this stroke--because of it.

I've talked about all the ways my life has changed due to the stroke. In my weakest moments, I dwell on the negative impacts. I won't lie, there are many. But to be perfectly honest, there are almost as many positive impacts.

And now if you'll excuse me, I'm going to go kiss my sleeping husband and enjoy the rest of this night.

Back

Sorry about the extended absence from the blog. I was following the old adage of saying nothing if you can't say anything nice.

The way things stand right now, J.J. is healing nicely from his knee surgery and is able to walk around more each day. The problem is that his speech is horrible since the surgery (well, it's been pretty bad since 2/15/09, but you get the drift...). I'd say he's probably been set back to about where he was this time last month. And even though to my rational mind, this makes sense when I stop to think about it (when he's focusing a lot of energy on physical recovery, be it when he's sick, tired or stressed or whatever, his speech gets much worse--it stands to reason this would impact him too), I really just want to scream. Didn't we do this once already, and weren't those some of the darkest days of my life? I used to console J.J. when he was having a bad day by telling him that we'd never have to live that day again. Apparently I was wrong.

The other bad thing about all of this is that it put me back into the role I was in right after the stroke--I've had to do all the cleaning, all the yard work, all the cooking (or mostly lack thereof; our diets have been pretty bad this week) and all the caring for children and for J.J., all on my own. Unfortunately I'm not as fresh as I was when I first started on this adventure, so it's been pretty draining. Today is the first day in a week that I haven't felt like just burying my head under the covers and trying to forget it all.

Anyway, here's the weekly recap and preview of what's to come:

1. J.J. was supposed to have his neuropsych assessment last Thursday, but he was in so much pain he was barely coherent, so we called it off. He's rescheduled for the END OF JULY. Sigh. But they do have us on the list to fill in for any cancellations they might have, so hopefully he'll get in sooner.

2. Friday was J.J.'s appointment with the ENT (Ear Nose Throat doctor--I believe the proper name is otolaryngology or something like that). His right vocal chord is not paralyzed, just weakened. He's going to be starting specialized physical therapy in the next couple of weeks specifically targeting that vocal chord. Or he could just yell at me and the kids. Whatever works.

3. Yesterday J.J. did his weekly blood pressure/weight check at our family doctor's office. His blood pressure was 118/78 and he's lost another 5 lbs.! I won't reveal his weight on this blog, since I'd die of embarassment if he revealed mine, but this brings him down below a major threshold mark he was trying to reach. He's the incredible shrinking man.

4. Tomorrow J.J. is scheduled to see his new cardiologist (remember, this is the most highly recommended cardiologist I could find in Indianapolis, even if he does take us out of the Hendricks Regional system and into St. Vincent's system). I'm crossing my fingers that this guy will take a more aggressive approach and will do some more tests to see what exactly is going on in there.

5. Also tomorrow, J.J. is scheduled to reunite with our old friend Dr. Acula (the neurologist, for our newer readers). He's progressed a lot since the last time Dr. Acula saw him, but darn it, I wish the good doctor could have seen him the way he was a little over a week ago.

6. We discovered the culprit on J.J.'s hair loss! It was a medication all along. Apparently it's his ACE inhibitor (lisinopril), so our family doctor is trying to figure out a drug in the same class that we might be able to try, while he still has some hair left.

I think that's all the news fit to print. As you can see, J.J.'s busy, especially since Eli is now out of school and spending the summer with his dad instead of going to day care (we have to keep Leah in because her full-time preschool spot might not be available in the fall if we take her out now, not to mention Eli waits much more patiently at doctor's offices than Leah does!) Eli and J.J. had a bonding day today over Eli's 4-H cookie workshop, and they brought home a pan of cookies to boot! What more can you ask for?

Stress

Things can change so much in a day. J.J. is in significant pain today and has spent the day hopped up on Vicodin and dosing in an armchair downstairs with an ice pack on his knee. Here in a minute I will go down and rouse him enough to feed him some more Vicodin. When it has kicked in, I'll get him up for a shower. He's supposed to have his neuropsychologist appointment tomorrow, but honestly, I think it may be a waste of time for him to go. Because he's in so much pain and because of the Vicodin, he's barely able to communicate today. It's very discouraging.

And that leads me to the topic of tonight, stress. I was just thinking as I was hanging up some laundry that if I could, I would go back in time and tell the Erin I used to be to stop being so wound up all the time. I used to think I had a stressful life. I didn't. Stress is asking your husband ten times a day to smile for you so you can make sure his face isn't drooping (one of the signs of stroke). Stress is not being sure when (and even if) he'll return to work. Stress is having your heart beat out of your chest every time you call home and he doesn't answer. Stress is listening to your four year old daughter doctor her baby doll because Dolly had a stroke. Stress is abandoning all of your hobbies in favor of studying new therapy techniques and attending support groups. Stress is fitting all of this into a schedule along with your job that requires well over 40 hours a week of your time. That is stress.

My life is so hard right now, and I know I have no room to complain, because I should be thanking God that I have the opportunity for it to be so complicated. And I do, believe me. It's just very, very wearing to never have down time.

And now I must go wait on the invalid again...

Vacation Pics

We went to St. Louis over the weekend with our friends Mike and Nova and their two boys, Gabe and Connor (aka my future son-in-law; he and Leah have been quite adamant about this since they met when they were two). Here's a few pictures from our trip: