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.