erobertson

Thanks for all the comments, guys. I know my kids will be okay and that there are things they've gained from this whole experience that they may not have learned otherwise. I was just having a melancholy moment and thinking of all the ways my kids' lives would be different had stroke not taken our family on. My kids were already amazing people before the stroke, I'm sure they'll be even more amazing now! Thanks for reading! Erin

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

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 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. 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.

"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.

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!

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.

(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. 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 (who said J.J. had "basically" a stroke. Basically? Um, no, jerk. He did in fact have a stroke). 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. I'll keep you posted if this changes.

(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---- 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 fromn 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

(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 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!

(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 jealous of her. She doesn't know what she's missing, so she doesn't miss it. But I do.