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
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. For 12-14 hours a day. Jerk.
7. Always keep essential toiletries and at least a week's worth of clean clothes on
"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,
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
Sorry for the onslaught of posts today--but now you're caught up with enough of the story from my other blog to have some idea of what's been going on in our story! From now on, no more days of massive posts, promise!
(Originally posted October 25, 2009)
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.
(Originally posted October 21, 2009)
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----
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
(Originally posted October 12, 2009)
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
(Originally posted September 13, 2009)
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
(Originally posted September 8, 2009)
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
(Originally posted August 23, 2009)
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 tomorr
(Originally posted August 20, 2009)
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 morni
(Originally posted August 9, 2009)
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 mo
(Originally posted August 6, 2009)
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
(Originally posted July 21, 2009)
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.
(Originally posted July 26, 2009)
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 a
(Originally posted July 20, 2009)
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
(Originally posted July 15, 2009)
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 rec
(Originally posted July 6, 2009)
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).
(Originally posted June 26, 2009)
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 d
(Originally posted June 21, 2009)
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 w
(Originally posted June 12, 2009)
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
(Originally posted June 4, 2009)
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 previou
(Originally posted June 4, 2009)
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 pro
(Originally posted June 3, 2009)
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.