Sunday, October 9, 2016

Red Iguana

I have been reading the blog my family kept for me when I first had the stroke.  It brings back a lot of memories, both good and bad. I realized that I wanted to keep those memories but they were miszing from that blog. So here are the blog entries as well as 

more latermy color commentary.

Wednesday December 5 2007

The surgery to place the trach and the peg was successful. No complications. They feel this will really help her be more comfortable. She will be sleeping for a while now because they had t0 put her out.

Early in the evening I had a nurse come in and sit down by my bed. He asked If I were LDS and I nodded.  He spoke with me a bit, and although I can''t remember all that he said, I remember feeling comforted. He could probably lose his job for that so keep it to yourself.

Later that evening my friend Karen and her husband Scott came by. I was not supposed to have visitors in the ICU at that hour but Scott may or may not have told them he was my doctor. He wasn't. In his defense, he was A doctor, just not MY doctor. And he is now so it all works out. Anyway, they had just been to eat at one of my all time favorite places, Red Iguana. They didn't want to tell me but I could smell it.  

After they left I started coughing and could not breath. I felt like everything they had touched or even thought about touching was out to get me. Nurses ran in and started wheeling me out and the last thing I remember was someone saying "Stay with me."  Next thing I knew I was waking up with a trach. In reality, it had nothing to do with them but I totally hold them responsible and think I should at least get a free meal at Red Iguana! Kidding, of course.

Sunday, August 28, 2016

School, Gypsy Kings, Clock and Tic Tacs

Interesting week. Not always pleasant but Robert and the kids always make me laugh so I never sink too far into a dark mood.

On Wednesday the kids started school. In years past they have been year round so the first day of school was staggered depending on which track they had.  Back to school morning was, if not easy, at least manageable for me on my own. This year they are on a traditional schedule. People were parking on our street because there was no space by the school. Even the handicapped parking was full. Inside was crazy! I think the whole state was there. One could literally not move without bumping into people. In large crowds Robert always holds me tightly and tells me that, "You move for no one." Together we made it to both of the kids classes. Again I was reminded that there is no way I could handle all of this without Robert. I AM different. Other parents take for granted walking through crowds without losing their balance and mornings like that are relatively easy and require no more planning than making sure your shoes match your shirt. But Robert and I have to plan parking, timing, footwear that helps most with walking, etc. I never get to take these mornings for granted. On the other hand, the kids know this and open doors, ask people (nicely) to step aside, and are not totally embarassed by their parents. Man I have a good family!

Tommy has had difficulty with change ever since he woke up to lights flashing and strange men taking his mom away. I know, weird, right? Anyway, starting a new year always causes anxiety. I looked over at him while his teacher was talking and he had teary eyes and looked like he would rather be anywhere but at the school. I whispered for him to follow me into the hall and asked if he wanted to have a prayer. He could not even answer out loud and just nodded. I leaned close and the two of us folded our arms and closed our eyes there in the hall with people all around. After he was still a bit anxious but was no longer tearful and seemed to be slightly more brave.  He had the faith to know that Heavenly Father would take care of him and all would be well. I have never been more proud of my boy.

Every night, in her prayers, Jain says she is thankful that I didn't die. Simple but very sweet. Often this leads to questions about strokes and the events surrounding mine. I knew it was coming but I was still caught off guard when she asked, "Was it my fault that you had the stroke?" My heart broke. She had obviously been thinking about it. I had to choose my words carefully. I told her that a stroke can happen to any mom at any time when they push the baby out. I tore an artery when she was being born but it could have happened with any one of the kids and it has nothing to do with the baby.. She was a perfect, very small (barely 5 pounds) little girl and I am always happy she is here and I would happily have another stroke if it meant I got my three critters.She seemed happy with my answer. She still has lots of questions but, for today, she seems satisfied.

At dinner tonight, Papa (Robert's dad) was asking Aleq what different words were in Spanish. He would often laugh and tell us that he only just started learning. I told him that if he stuck with it he could translate all my songs by The Gypsy Kings. He rolled his eyes and said, "Yeah mom, THAT is why I'm taking Spanish. How rude!!! He should love all my music! I thought he just liked our chats in the car but it turns out he just doesn't want to listen to  my music. Not even U2. Have I taught this child nothing???

Also tonight at dinner, the grandfather clock was going. When we were first married, Robert would ask his dad to stop it whenever we visited St. George. But since they moved up here, all of us have mostly ignored the chimes. But somehow tonight was different. Every 15 minutes it would chime and I would suddenly remember being at sleepovers in skips basement, in the very same bed with 2 or 3 of his daughters. I would wake up when it was still dark out and the only sound was the chiming of the clock. Every chime was 15 minutes closer. Just not sleeping over or going home very early wasn't an option. Too many questions and I didn't dare risk his anger. Besides, maybe today he wouldn't come.  So I would just lie there, heart racing, trying to calm my breathing so I wouldn't awaken the girls and counting the clock chimes as the numbers got bigger. Then I would hear water running. Shower before work. Panic would set in.  Shortly after I would hear footsteps on the stairs and I knew he was coming. I only remember bits and pieces of what he did each time because I have spent a lot of time purposely trying not to remember. I remember Stetson cologne. I remember his freshly washed hair. I remember him kissing and fondling me. And I remember being so grateful when he had to get to work and it would be over.
Yes, I'm 42 now and can see how messed up my thinking was and I really feel that I have worked through it. But sometimes something like that will slam into me and I feel what I felt then and I want to go back in time and protect and comfort that little girl.

Did you ever see the episode of Seinfeld where Elaine gets annoyed with a guy who sidles up to her at work so she has him carry around Tic Tacs?  We always laugh because my walking isn't exactly silent. Robert says that strokeys don't need Tic Tacs. Nice.

That was my week. Mostly. All in all it's pretty darn good.

Saturday, July 30, 2016

It's Tough Bein' Karl Malone

I should have posted all this earlier but I have been grouchy. You see, it's hasn't been an entirely fun
for me .But whatever, I'm good now so...better late than never.

a few years ago Robert and saw a documentary about Karl Malone. He's very entertaining. He was complaining about things that were hard in his life that Robert and I were just laughing because the things he was saying were ridiculous! Then he said what just be one of the best things he ever said. "It's tough bein' Karl Malone." We could not stop laughing! Now whenever somebody complains about something trivial, like "My cars heated steering wheel won't turn on." we always say that it's tough bein' Karl Malone. The same idea applies here. I was focusing so much on the negative that I was ignoring the overwhelming good all around me.

On October 30 2015 it became official, Robert has been married to strokey me longer than he was married to regular old me.  I don't know how or why he does it. I mean, we can't go anywhere together that he does not have to offer me his arm and help me up from chairs.  All the cooking and cleaning he has done could rival Michael Keaton in Mr. Mom. I'm very high maintenance. On the other hand, I totally get all of his M.A.S.H. references, make enchiladas and chili verde that he loooves, and let him go crazy on his car obsession. Okay, there is more to it, on both sides, than that but you get the idea. I give him all the credit for keeping this family together and happy. Good thing, too, because I really like him.

A few days before Christmas I stated feeling pain in my neck. I chalked it up to sleeping weird
and took an Advil. It didn't help. I rarely feel my migraines as strongly as I used to but I got one and it about knocked me flat. Not the best timing. Robert kept telling me to have it checked out. But not wanting to be a bother, I did my best to ignore it. Then on Christmas day I was at my mom's house and she and my sister got wind of it and made me promise to get it looked at. I was still unconvinced. On the way home Robert suggested that I text my doctor to just ask. He advised me to go to the E.R. Great. Robert and I headed there at around 10 that night. We ended up staying all night. Poor Robert had only a hard chair and we were both awake all night. Good because, like most parents, we had a good, full nights rest the night before. Not really. Robert was texting my doctor (who was at his sick daughters house) with updates, I was texting my friend, Karen, who happens to be my doctors wife, and they were texting each other so nobody got much sleep. I had a CT Angio with contrast and it showed that my carotid artery had dissected and was 70%  occluded. Wonderful. Vertebral artery dissection was what caused my first stroke. We caught it and I was already on aspirin (I honestly love the taste of that stuff) so no strokes. Yet. They had plans to admit me but my Neurologist came in and told me that there was nothing I could do there that I couldn't do at home. Start Plavix as well as aspirin and GO HOME!!!! I was so happy to get out of there but also so worried and confused. Nothing for 33 years and then 2 different arteries dissect in 8 years? Why? I had more tests, more brain scans and ultrasounds and everything came back totally normal. I was okay knowing that childbirth had caused the dissection but now there are two and no one seems to know why. Now I feel like a ticking time bomb. I wear a medical I.D. bracelet, can't go skydiving (Robert loves it and had almost talked me in to it), and won't vacation where there isn't a close hospital. I'm much more aware of things now and am on high alert. At least I know the symptoms and am already on anti coagulants so having another stroke my biggest worry right now. I swear my body is 100 instead of 42.

Speaking of which, I am now the same age as Skip was when he abused me. Robert has been 42 for nearly a year and it didn't even bother me. But now that I am, it has me thinking. My oldest is 13. I look at his friends and think, they are just babies! How could someone of my age be attracted to someone that age? I'll never understand pedophilia and I never will and I never want to.

For a big part of this year I was angry. I was angry that my body was betraying me and I was mad at God for letting this happen. I sure wasn't fun to be around. I don't know why I am so dense sometimes. I was totally missing all the good things. I actually had so much to be thankful for. I'm thankful for family (even in-laws!!!) who jump in and bring meals or watch kids while I'm at appointments, a husband who takes off work just because he wants to knows the doctor will be calling and he doesn't want me to be alone and kids who pray for me and support me in their own little ways. But mostly I am thankful to my Father in  Heaven to whom I can just pour out my heart and not try to act happy or strong. I've prayed in a lot of interesting places for some pretty strange reasons and He always hears and answers me. He takes good care of my little family.

See? It's tough bein' me.

Wednesday, July 27, 2016

For Craig

This is a very simplified version of my dating history but it gives an idea.

When I was old enough to date, (ok. maybe a few months before) I dated guys who I may not have dated if I had never met skip. I didn't have much of a self esteem and didn't feel that I deserved to be treated well or date the "good" guys. I am still friends with some of those boys so I don't want to say too many mean things but they were as respectable as I thought I was. If I did get asked out by someone who, if  they knew the real me, would be repulsed, I was uncomfortable and found ways to make sure our first date was our last. I think I was lucky because Jed was in my same school and, out of respect for him, the boys thought twice about how they treated me. Otherwise, I could have been in trouble. There was one boy of whom I thought the world and with whom I  had a lot of fun. We had a lot in common like our love of old movies and jumping off our deck onto the trampoline. Okay, really he ripped his hand open doing that but we had fun at the Emergency Room.  But I put the brakes on that before he could see what I was really like.

About a year later I met a boy with whom I fell breathlessly in love. He was leaving for his mission in two months time so there was little chance of my big secret coming out. Also, I had some serious trust issues so a long term relationship was more than I ever thought possible. But two months I could handle and he was one of the "good ones" We both threw ourselves into the relationship with all of our hearts. It was the kind of thing where he would leave his car open because he was in such a hurry to get to my door and I even tagged along to his college class with him because we didn't want to be apart. I promised I would wait for him and we even  picked a wedding date for shortly after he got back.

When he left and all we could do was write, my secret was still safe and the relationship was still safe for me to be in.

But when he got home it all fell apart. Suddenly things were real. My subconsious stopped me from giving it my all. I thought was a horrible person and men were the enemy so the relationship stood no chance. I started pulling away and playing games, secretly hoping that he would put up a fight for us but with the way I was acting, he probably didn't dare put himself out there. Every time he didn't react like I wanted, I lost a little more trust in him and our chances.  I even left for San Antonio for a month or so just to prove a point.  I don't know what that point was but I felt it necessary to prove it. When he didn't even call me and failed to acknowledge my birthday, I knew it was over. Oh I didn't want it to be. I was desperately in love with him but at the same time felt that I had already had an affair, was damaged goods and therefor undeserving of him. We gave it a half- hearted try after that but deep down I knew it could never work because I was so messed up that I honestly felt that I was not worthy of a good, healthy relationship.

Contrast that with how my relationship came to be with Robert. I had been through the court system, therapy, and at least one healthy relationship. When I met him I thought he was the most handsome man I had ever seen. Unfortunately, so did my good friend. I was still under confident  and she was, well all the guys seemed to like her. So I got to see how he treated her. And many girls after that. He was never alone for long before some girl would come after him. He was rarely the instigator but there always seemed to be plenty of girls vying for his attention. He treated them all nicely and was very honest and respectful of them but was choosy about with whom he spent his time. He considered me a good friend-one of the guys. I used to be included in conversations about his ex-true love, what he wanted in life, how school was going, why or why he didn't like certain girls etc. I also saw how he treated his family, as well as others. I saw the way he lived his religion, how he viewed the world, his honesty, his humor, as well as many other traits I grew to love. We saw each other often the first few months and then nearly every day for nearly two years. I got to see more than I would if we were dating and we were both putting our best feet forward.

After a year or so I realized how important he was to me and told him that I thought of him romantically, He let me know that he just didn't feel the same way. He was honest, respectful, and kind. I was hurt, yes, but I was also totally impressed by his actions!

It was only a few months later that I started spending time with a different guy. We had even talked about a future together. But I was still hanging out with Robert, fully understanding that we we would always be just friends. Then one Sunday night (June 13th to be exact) we were just watching T.V. when we kissed. After that there was no thought of the other guy (sorry Justin). Robert and I were inseparable. He knew all about me, even some things I wish he didn't, like my secretly liking Barry Manilow, and he never questioned my worthiness or my truthfulness. He hated what had been done TO me and was not shy about it. Whenever I would have a moment of self doubt, he would put up just enough of a fight for us to let me know he was 100% in this with me. I wasn't afraid to love him with my all because I already knew his character. It was a foregone conclusion that we would get hitched and I had my dress and veil even before we got engaged. In the last 17 years, his love for me has never faltered. Even when I was dead set on his divorcing me after the stroke, (it would have been so much easier for him) he just wouldn't. My room faced the elevators and around 5 that evening, a huge bouquet with legs got off the elevator and walked into my room. he kissed me and said, "I can handle anything but DON'T YOU EVER LEAVE ME!" There is a song by Sheryl Crow called "Are you strong enough to be my man?" Robert is the only man I have ever met who is.

Monday, May 11, 2015

Robert and HPR

Robert has had back problems for years and the past couple of years it has gotten really bad. Really bad. He has tried nearly everything from physical therapy to numerous surgeries to strong medications. He HATES the medications for their  numerous side effects.  He even has to be on oxygen at night because the meds decrease his levels when he sleeps. Luckily we both like the white noise of the oxygen machine.
Anyway, he recently had a spinal cord stimulator inserted. It has little wires that sit very close to the spine and leads that touch certain nerves along it and basically shock the nerves and block some of the pain. It's all hooked to a battery pack that is put in his um, bum and he has to charge it once a week with a belt. He has to carry around a remote controller for it and can adjust it depending on his pain level. My kids think he's bionic and his friends at work said that they were going to try to hack it and control it for themselves.
When he was on the operating table, a scan was taken and everything was in the right place. They moved him to a bed and woke him up to give feedback while programming it. He kept telling them that he was feeling it too high. They told him the swelling was causing him to feel it weird and they would try again later. Well, come to find out, one of the wires did slip out of place and was too high. So they had to do it all again after only a few weeks. Fun.
The second time around I knew what we were in for. I bought frozen pizzas, froze some crock pot meals, cleaned the house (with help) and got everything ready.
His Dr. planned to just pull down the wayward wire and the whole thing should be relatively quick. But he was in the OR for a long time. When they finally wheeled his bed in, after a few hours, there were too many nurses with him (for my comfort) and his Dr. was telling me things I didn't quite understand. Apparently the original wire had already started to scar into place so they had to remove the whole device and put in a new one, including a new battery pack. Then in the process of placing the new wires, a needle had punctured the spinal fluid sack and the fluid started leaking. They did a blood patch which means taking a bunch a blood from his arm and putting it in to the leak and letting it clot and form a plug. Robert had to be flat for a week and would have major pain in both his back and his head. He wasn't even allowed to lift his head a little to watch T.V.
I just wanted everyone out of that room!! I was not going to cry in front of them. Robert had no such thoughts and let his tears flow. That might have been because the San Antonio Spurs were playing that night and he knew he couldn't watch it.
I know it wasn't as bad as it could have been but seeing my strong husband lying there in huge pain and crying just about broke me.
The next few days were hard  on us both and involved sponge baths, a dark and quiet room for him, bendy straws and positioning a mirror over his head so he could watch T.V. Family brought meals, cleaned house, watched the kids, mowed the lawn and really took care of us.
When Robert and I talked about things later, we found that we had both felt that things would not go as planned. We both knew that with anything spine related things can go horribly wrong and could have been so much worse. Thank you to everybody who prayed for us and served us.
We both feel that Robert was blessed and he sensed help from Heaven. We are so grateful for that. We both feel very loved.

Today at the gym I saw a girl who I have known and loved since I moved to her school in second grade. I remember that I always envied the cool stairs outside her apartment and I wrote a poem in 4th grade about how pretty and nice she was. She still is.
She works as a nurse for the foster care system and I would imagine she sees some very awful and sad things. She even got a little tearful and told me that it had been a hard day. Of course, she didn't say anything more.
Talking to her, once again, reminded me of the goodness of people. This world is very dark and ugly at times. But there are strong, beautiful people who are brave enough to wade through the ugliness to bring a light to those in need. I love that she still shows emotion, obviously worried and caring. She is truly an instrument in Gods hands. I can only hope to be like her.

Tuesday, January 27, 2015

Hi, I'm Jodi. Nice to meet you.

It has been a long time since my last post and mostly, it's because I'm lazy. I could say I have been busy because I have. I have also had a surgery, weeks and weeks of one person or another being sick, and a broken computer. Note: NEVER have computers and children in the same house/city/state. But lets be real, if it's a contest between Cheers reruns and my blog...

So Here are a few highlights from the last while.

I had eye surgery in December. My eye was constantly irritated and dry feeling and my eye Dr. said that the skin below it was drooping and it was not strong enough to ever close all the way. I just never noticed because I was asleep. So he redid the lower lid from 6+ years ago and put another gold weight in. I was bruised up and swollen and looked like I had lost a fight to Layla Ali. Luckily, that is the paralyzed side of my face and I didn't even need pain meds. One of the few times being strokie paid off.

Christmas was very nice and very quiet. The kids usually mail off their letters to Santa (I'm wondering if Tommy will still mail his next year) and we try to have everything done by Halloween. That is easy to do with little kids but not so easy as they get older. I did not even come close to my Halloween goal. And thank goodness for Aleq who was able to divert attention away from my receiving and hiding packages.


Aleq: Sometimes I have so many thoughts in my head that I wonder if I'll ever be able to ask enough questions. Like, what is the tax rate for Syracuse City? I might need to know that one day.

Tommy: I'm going downstairs to cover myself in stuffed animals.

Me: Jain, I'm glad we get to be together forever.
Jain: Well here on earth, right?
Me: Here on earth AND in Heaven
Jain looking both horrified and disgusted: But there are DEAD PEOPLE all over in Heaven!

And last, I got a new wheelchair! It is hot pink and power and everything! I feel a bit like a failure because I have worked so hard to get out of a wheelchair but the first time I rode down the street with Jain on her bike, I realized that my while I can still try to walk when possible, my pride should take 2nd place to playing with my kids. But I still need LOTS and LOTS of practice driving it. Now I wish I had played more video games in my youth.

Saturday, November 29, 2014


7 years today! It could be called the 7 years war. Okay, maybe not affecting so many people as that war, but it's been my own little battle. A battle I am winning. I won't say I have won because this will go on for the rest of my life, but I have more happy times than sad so I would say that counts as winning.

There is something that I have been thinking about a lot. A change has been taking place for many years and it has been so gradual that I hardly noticed.

When I had my stroke Aleq was only 5 but old enough to understand some of what was happening. He was able to verbalize his frustrations and we were able to work together and remain close. He was and is my pal. Jain was only a few days old and taken the following day to live with my sister and her family. She had a warm and loving environment there and when she came home she was sad,  absolutely, but again, Papa and Nanny stepped up and made her feel safe and happy. Robert was, of course, a HUGE part of their happiness. I don't want to down play their struggles. They were big. They still are.

Tommy had turned two just 21 days before my stroke. He awoke that morning to lights flashing outside his window and many strange voices down the hall. He was in his crib and I still don't know for certain who eventually went in and got him. Up to that point we had been stuck together as if with glue. He wasn't really verbal yet, and I knew his baby signs and baby words better than anybody. He spoke mostly in sounds (car was a vroom, dog was a Ruff! ) and I used to carry him all over in my Baby Bjorn and we would chat and laugh and we were as close as we could be.

Then my stroke broke his world. I put him in his crib at night, and wasn't there in the morning. There were people in our home all day who could not understand him. I am told that that evening, our friend, Scott was putting him to bed and Tommy kept signing something to him. Scott laughs about everything he was trying but nothing worked. Poor Tommy. Poor Scott.

In the days that followed, mommy never came back and daddy was rarely home. When he did come home, stress reached to every corner of the house. Thankfully, Roberts parents just moved in (to our kitchen at first) and took care of the boys. My family also jumped in and made sure the boys had chances for fun and to just be kids.

When the boys did finally see me, it was a couple of weeks later and I looked nothing like their mom. I had tubes all over, my face was different, I couldn't talk, my bed had scary buttons all over it, there were strangers all over, and the hospital smell must not have been pleasant. Oddly, I almost like hospital smells because they remind me of a terrible time but one when many, many people showed our family such kindness.

There were times when they couldn't see me for weeks at a time (ICU) and truthfully, that was probably a good thing.

Then I was living at my moms house for over a year. Tommy could play and be comfortable but he rarely spoke to me. Once when Robert took him home after being there, he found a sewing machine light, buttons and numerous toys stuffed into Tommy's diaper. 

When I finally moved home, it had been nearly two years since I had left in the night. I looked different, talked different, had a wheelchair, and didn't really act like "Mommy".

Is it any wonder that during this time he developed a relationship with Daddy that rivaled...well I can't think of another close father and son relationship. Wait! Lehi and Nephi. Okay, yeah, it rivaled that one. It was definitely hero worship. He wanted to dress like Robert, sit on Robert's lap, eat the same foods as Robert, always be right next to Robert, etc. Robert, of course, ate it up. He adores all three kids and this just melted his heart. Tommy is nicknamed, Sito, and he told us that he is Dada Jr. and Robert is Sito Sr.

I loved this. I really did. I love Robert so much that it makes sense to me. But sometimes I missed being the go-to for Sito. I had already become the go-to for the other two and I would never want to take anything away from Robert. But not only was I not  the go-to, I wasn't even on his radar. For a long time I got the distinct feeling that I was somebody he could just tolerate until daddy got home.

I knew I had to have patience. His being comfortable with me wasn't something I could force. And seriously, it made my heart happy to see him so happy around his dad. I knew I would have to wait and let him figure out what he needed our relationship to be. And I didn't have to wait long before he started to love the new me.

At first it was little things like our shared love of Phineas and Ferb. Then grabbing my hand while walking. And then it grew from there. Slowly. Very slowly. There were plenty of times when I thought this was just another effect of the stroke and this was as good as it would get.

Last week Sito got hurt. It was nothing serious but he sure thought it was. He ran to find me and we snuggled up on the couch until his owie magically healed itself. He and I have both been sick this past week and he thinks it's wonderful that we get to do things like watch t.v. in my bed and stay in our pajamas all day. He does a little shy face that makes me laugh and when I asked him if he had done that for dad, he replied, "I don't want to." It's just for me. I have my Sito back.