Sito

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.

This article was posted on "Young Stroke Survivors" FB page and I really liked it. I'm nearly seven yeas out and fatigue is still a major problem for me. I have to plan my day around it. But my biggest question is whether house work is considered both mental and physical. That could be my new excuse for not doing it!!

FATIGUE

A nearly universal complaint that people have with head injury is fatigue. Although fatigue decreases over time, it is a very persistent problem. Many patients recover from nearly all of their other deficits, only to have fatigue prevent them from returning to work full time (they go back, but at a part-time level). A lot of people are used to working 50, sometimes even 60, hours a week. In addition to a 9 to 5 job, they come home and work in the home, or they have a second job. Fatigue from a head injury drastically alters their lifestyle.

Mental versus Physical Fatigue

There are two types of fatigue: physical fatigue and mental fatigue. "Physical" refers to doing some sort of physical labor such as mowing the lawn or working in a flower garden. Just after a head injury, physical fatigue may be troublesome. For example, if you're relearning to walk, the amount of effort it requires to relearn to coordinate the muscles and build up strength is going to be substantial. For most people, physical fatigue tends to go away after 6 months. What surprises people with a head injury is the mental fatigue. For example, you could spend all day in your yard pulling out weeds and not feel tired from it, but an hour of balancing the checkbook will leave you exhausted. This is mental fatigue, and tends to go on for long periods of time. Let's use another analogy. Think of owning a car that you can only fill with half a tank of gas. You can now only go half as far as you used to. When you run out of gas, the engine stops. With mental fatigue, it's as if the brain runs out of chemicals and just shuts down.

Why does this occur? Let's look at the brain as a big phone line system. We make a daily call from Chicago to New York City and it’s a direct line. If the line breaks, you lose the connection. The phone company is prepared, however; they realize that phone lines break, so they've programmed their computers to reroute phone calls. As a result, a phone call from Chicago to New York may have to go to St. Louis, Pittsburgh, and then to New York. It's no longer a direct call--we've added 3 more connections. More time and energy is needed to send the same information. This analogy seems to make sense. People with a head injury tell me that it takes much more effort to get the same answer.

Does fatigue get better over time? For most, it does. Does it go away completely? For most, it does not. At first, people may work for 3 hours and then they're beat. Eventually, they work for 4 hours, then 5 hours, then 6. I have many people who finally work 8 hours a day, but are extremely tired in the evenings and need the weekend to recover. If you become physically ill with a cold, or have surgery, this fatigue disorder briefly comes back with a vengeance.

What Can I Do?

Most people tend to get fatigued in the afternoon, generally around 2:00 or 3:00. One suggestion--if you're going to do something that is stressful or hard, do it in the morning. Your mind will be a lot clearer in the morning and less prone to making mistakes. Realize that fatigue will affect your memory. If you learn information when you are fresh, it is more likely to stay with you. If you stay up late studying for a big exam, you will have more problems trying to recall this information the next day.

Exercise improves your ability to think. This seems pretty obvious, but for individuals with head injury, it becomes crucial. If your doctor has cleared you to do exercise, you should make a conscious effort to do it. Why? Even though the brain weighs less than 5% of the entire body, it uses 30% of the oxygen in the body, and probably the same amount of glucose (which is the energy that runs your body). If we use a car analogy, a clogged air filter and gunked up carburetor will not allow full power. With exercise, you get more oxygen into your blood system. Also, for people who have chronic pain syndromes, some types of exercise are very beneficial. For example, swimming is a very good exercise for people who have neck or back pain. Always talk with your doctor about what exercise works best for you.

Diet is another important consideration. When I say "diet", I don't necessarily mean to lose weight. It's important to eat 3 good meals a day. In our rushed society, we'll eat a doughnut, have some coffee, and run off to work. That's not a very good diet. The sugar that you get from a doughnut or the caffeine from coffee gives you a brief burst of energy, but that energy doesn’t last. We've all heard of a "sugar buzz." Children are very prone to this. The same thing occurs in adults. The problem with sugar is that you "roller coaster"--you get that burst of energy but you come crashing down. The trick is to have a constant supply of energy to the brain.

You need to gradually increase your stamina. Going from not working to working 40 hours a week is very stressful. For the head-injured individual, this is nearly impossible. You must give the brain time to build a tolerance to fatigue. A common approach to this problem is by having people gradually return to work. You might start off with part-time, beginning with 1 to 3 hours on returning to work. Gradually, add hours only as you can tolerate it. What's the problem with this? Most employers only want you 100%. They want you there 40 hours or they don't want you there at all. Many employers are beginning to realize that this is a discriminatory policy. A head injury program will work with the employer. Businesses are beginning to see that good employees are hard to come by. If you can't return to work, however, volunteering is a good means of building job skills. This will also help to decrease fatigue and will improve self-esteem.
TRAUMATIC BRAIN INJURY SURVIVAL GUIDEBy Dr. Glen Johnson, Clinical Neuropsychologist
 

Davis County Schools Foundation

A while ago our family was asked to be a part of a back to school shopping spree given by the Davis School Foundation. I'm not going to lie, I felt a bit sheepish for accepting. I know that there are many children less fortunate than mine and, frankly, we seemed undeserving.
I talked to my sister who works for another district and she assured me that it was not only for financial difficulties and that I should accept with no reservations. I also spoke with a few others, including Robert, who reminded me that aside from the financial, (which is still going on) think of the things my kids miss out on. I can not go on field trips, can't volunteer in their classes,  can't walk with them to and from school, and when they get home it is usually to an exhausted mom who can barely sit up long enough to help with homework. Admittedly, I love reading time because it can be done on the couch or on my bed and usually involves snuggling.
So I sent them on the shopping spree, with just a hint of reluctance. Parents were not allowed so I had to wait at home. Again, my saintly sister stepped in and offered to go with Jain.
When they returned, Aleq made me stay in my room with the door closed. I could hear giggling and everyone talking at once. Aleq kept yelling from the living room to be sure that I was not peeking. It was like a reverse Christmas.
Finally I was allowed out and they (with Wendy's help) had laid all their treasures on the floor for me to see.  It covered every surface. They had smiles that nearly blinded me and they could not stop talking! I heard all about their one on one volunteer, friends they saw that don't go to their school, their amazing new shoes (complete with a running demonstration) and on and on. Their excitement was catching and I found myself near tears.
That night when Daddy got home, he asked about every detail and they were all happy to share.
Even after school has started, they get happy every time they get to wear their new clothes and when they see another kid with a matching back pack (every child received one) they have to go talk with them or yell to them. They are part of a cool new club.
Thank you, Davis Schools for thinking of my kids. It did and is continuing to make them feel special and happy!!

Happy 40th

I realize that many people want to just ignore birthdays and especially their 40th birthday. But I am very blessed to be around to see mine!! I can't even describe how much I love milestones like this. Every one of them is so wonderful to reach and I feel a little thrill each time I realize that I get more time with my family!
Robert had a big party for me and we figure we had about 70 people stop by. He had Subway sandwiches, a cake, lots of desserts, and people told some pretty interesting (embarrassing) stories about me.
But my favorite thing was when Robert showed be the cake and there was only a 4 candle. No zero. He gave a blue bag from Tiffany and inside was a beautiful round necklace. The zero.

 

 

 

Zero

 

 

 

 

Our own "Tiffany" moment. Awww

Opening the gift.

Thank you cousin, Brittany for taking these!

Jain had to add her own touches to the cake.

Seriously, Robert made the whole day rock and I loved seeing all these friends and family!! It was definitely a day worth celebrating.

Because It's My Blog

The other day I took the kids over to buy some lemonade from the neighbors. There were 7 little kids there when some older boys showed up. The boys threw out some words, one in particular, that I could not believe. I politely asked them to watch their language around the kids and they were contrite and apologized.
When we walked away, Aleq had huge eyes and Tommy told me that he had never heard anyone use that word. Jain had not heard and whispered incredulously, "Did he say shut up?" That was the worst thing she could think that someone would say.


Because this is my blog, I am posting pictures of our trip so Sun Valley and some other stuff. Just because I want to.

After Jain gets her hair cut, she hangs out with the owner, Perry.

Hugh Hefner/Sito

Aleq fell asleep on Tommy on the way home from Sun Valley.

Aubrie going through Jains purse. This was just before Jain freaked.

Jain hanging out by the pond.

Swing, batter!

Aleq is getting pretty good at this!

Will and Matthew retrieving the soccer ball.  I'm still not sure why they had their game right next to the pond.

Beautiful, huh?

They were usind shaving cream to help me clean the counter.

Achoo!

Her earring fell out so she had to have it pierced again.  Poor girl.

Timing

If there is any lesson this whole process of recovery, it would be patience. Unfortunately, I am still learning that. But the brain does not heal quickly. At all. It has been over 6 years and things are still changing. Just yesterday I woke up with a migraine. Not a huge deal since I have had them...I don't know...I remember going to the school nurses office with one in the first grade. But since the stroke I have not felt the pain. I have had the aura, upset stomach and sinus pressure, but no pain in the head. I just take a couple of Advil and I'm fine. Sadly, I could actually feel the pain yesterday. It wasn't as bad as it used to be but still. It was one of the few perks of the stroke. Also, this week my face has been doing a lot of twitching. I was told that the nerve transplant would take years to finish healing and I guess that is right. Oddly one particular muscle twitches whenever I hear a loud noise. Weird, huh?
Having things still change has really made me start, or continue, thinking. There have been so many times when I can see the Lord's hand in my life, especially when I look back. One of the greatest miracles was the timing of the stroke itself. Any sooner or later would have been disastrous. For example:


Robert and I had nearly 8 years of marriage before the stroke. We had had some hard things but in general, our lives were easy. I think it allowed us more time to really fall in love. I loved him when we got married but we were allowed the time to grow so deeply in love that when we were really tested, being apart was not really an option. At least for him as I wonder all the time why he puts up with me.


I had a few years to really show how much I loved my boys before just being gone. It was a very hard thing, for all of us, to be apart, but with a lot of help and blessings, we were able to weather the storm.


My dad had passed away only 9 months before my stroke. It was a terrible shock and I was really sad. However, it allowed my  mom to have a lot of free time and a vacant house. She was able to temporarily move to Salt Lake to be with me every day and then have me live in her home for over a year after. She freely admits that she never could have devoted herself to my healing otherwise. But just as importantly, I have an advocate for me on the other side. I feel that my dad has worked night and day on my behalf.


Robert's parents were on two missions in the years before my stroke. Had they still been gone, they never could have done what they did. They moved from their home, five hours away, and only went home every other weekend. They lived at our house for nearly two years!! They cleaned, did laundry, cooked, finished a lot of the basement, and did all that was needed to keep the house going. But even more, they played, loved, cried with, and really took care of my boys and their hearts.


Had the stroke hit even a few weeks earlier, Jain would have died.


Today I took the boys to school, went to Hobby Lobby, finished putting together Aleq's project on Arizona, took it to him, cleaned the kitchen, did glitter tattoos with Jain, and took a second nap for the day. It was a decently busy day and I was able to drive and have the stamina to do what was needed. It will only get more demanding as they get older and I am able to do what needs to be done. Absolutely no more than needed most days.  I'm just happy my stroke was when my kids were small enough to not be busy.


There are many other reasons why the timing was perfect. Okay, not perfect in my eyes, That would be the stroke happening NEVER! But you get the idea.


Our family is actually very blessed and Heavenly Father knows us and is taking good care of us.

Emotions

I cry. A lot. I have been told that is because of the stroke and it is just one of the many new things to get used to. I cry at random commercials (thanks cheerios) or when my kids do something I think is genius, or when I almost fall, or when I breathe. Yeah, it's often.
I also feel other things more easily.  If I am on the phone and Robert whispers his input, I get all flustered and can't pay attention to either party. I get very impatient especially with my kids and especially when I am tired. I get more anxious about things such as sporting events or my kids trying something new.
Taking an antidepressant helps but only some. The rest is up to me. I talk to myself a lot. "Take deep breaths. It isn't appropriate to burst into tears over this, or here" (school programs) or "Robert is just trying to help. Hold up the INDEX finger as a sign for him to wait" and "What is the absolute worst case scenario and does this really matter in the scheme of things?"
As for the impatience, I have to really watch my sleeping and eating. Even then it gets hard. In the middle of a sentence I will have to change my tone or wording. I remind myself that I only have ____ minutes until bedtime. Mine, not theirs. I take some mommy time outs. But even after all that I sometimes sigh or snap. My kids call this "Talking Tired" and at times they just say, "Mom, go to bed." This mostly reminds me to calm down and we all bust out laughing. Or I cry.

True Artistic Talent

The kids draw a lot of pictures of me. With them, with daddy, me doing different activities, you name it, they have probably drawn it. I always smile and hug them but inside I'm full belly laughing!
But today I saw a picture that Jain had drawn of me for Mothers Day. My hair is in a pony and I have bright red lipstick. But the thing I noticed is that to her, I was normal. And pretty. And yellow.
I got thinking that they always draw me this way. Well maybe not always yellow.
My right eye is blurry and sewn smaller to help me blink. My whole right side is paralyzed  and I have to concentrate just to form words. I feel deformed. But to my kids, I'm just mom.

A Little of Everything

It has been a busy couple of weeks! First, congratulations to Tessie Friedli who had her baby girl yesterday!! I could not be happier for her!
Second, my nephew, Tanner, got married last Saturday in San Diego. As my brother, Craig, said, "Heaven is only a little less wonderful." The weather was perfect, Tanner and Christon were an adorable couple, Robert had a great weekend with the kids by himself, I got to see my brother, Craig, who lives in Virginia, and best of all, Robert made sure I had my very own room. MY VERY OWN ROOM. I spent lots of time with my siblings but had plenty of time to sit on my balcony, watch and listen to the ocean, and relax.

My view while having breakfast at the hotel

Craig, mom, me, Matthews head, Olivia and Wendy (couldn't look away from the ocean.) 

What Wendy couldn't look away from

My view from my balcony

The day after I got back, all three kids received their yellow belts at Karate. They are absolutely hilarious to watch and love every second of their lessons. I missed Aleq's ceremony because they did it at the first of his class instead of the end :(

So proud!

Tommy bowing to Master Johny.He got his belt before his uniform

A few days after getting back, Ana Jain had a scope at Primary Children's Medical Center. Going there always breaks my heart to see so much sadness. I have to talk myself into not bursting into tears for every family there. And I always leave there feeling so blessed that for right this second, my children are healthy. Anyway, Jain was treated like royalty and everything looked nice and healthy. Thank goodness! Robert was coming and going from his office about a mile away, and, well, I'm strokey, so we were very happy that Wendy agreed to come along. Jain was just more relaxed and happy with Wendy there. Thank you, Wendy (bonus mom)!!

She is not at all sure about all this

No wheelchairs here! She got to ride out in a wagon pulled by Wendy

The day after, I got to go see what Aleq has been doing after school. It's called Lego Mindstorms and he and his partner, Jackson, have programmed their robot to go through a maze. Sounds simple but it's not! It has been very intense and involves working with computers etc. that I may never understand.

Working on some final touches

The boys with their creation. Keep in mind that many kids were around me and I was trying to keep my balance.

One last thing. Right after my stroke I felt as if I had no "filter" when talking. If I thought it, I said it. I once told Robert exactly how many days it had been since we were...um...alone together. My mom was standing next to him. I once told a therapist that her breath smelled like eggs. Many, many times, while living with my mom, there were things about which I should have kept my mouth shut. I didn't. Everybody thought I was just using my stroke as an excuse to be rude. We used to joke about my lack of a filter but no one actually believed. It was just thought that I could control myself but I was choosing not to. But often I was horrified by myself!
As I was reading today, many other stroke survivors experience this. It was very therapeutic for me to read other people's stories and know that (just this once) I'm not totally crazy. It's a thing. It's anecdotal evidence for me but I'll take it. Although I can't take back what I said, I feel better knowing that A) I'm not just a mean person and B) I'm not alone on this.
Sorry if I offended you! 

Vacation and Growing The Basement

We just got back from a short trip to Arizona. Roberts mom (Nanny) was born and raised there and his dad (Papa) moved down there to live with his aunt. They ended up being in the same ward and it has been true love ever since. Nanny can't drive after dark and since his stroke, Papa can't drive at all so Robert volunteered to take them. The kids and I wanted to go along, and Robert assured me that it would be a 12 hour trip. Terrible, but after looking at the cost of flying 7 people for only a few days, it seemed acceptable. Um, yeah. We tried to avoid some construction in St. George and ended up taking back roads with construction of their own and many small towns. 16 hours. 16. Seven people in one car. Three kids, two in-laws, Robert and me. Again, 16 hours.

The night before our trip

He shaved his head after.

Sweet boy and his Papa

Mr. Aleq at Glen Canyon Dam

They thought this cactus was so cool for some reason

Of course, a pink horse

The next few days were wonderful, though. The weather was in the mid 90's, the hotel pool was beautiful with palm trees and shade, the Mexican food was delicious, and Nanny's brother even took us scorpion hunting/killing around his house. We did a whole lot of nothing and it was everything I thought it could be.
We even got to see the new Gilbert Temple which was unbelievably beautiful!
The trip back was ONLY 14 hours so it was a pure delight.
When we got back, there was a smell in our house that just smacked us in the face as we walked in. We could not place it. But then Aleq went downstairs to get P.J.'s and found the source. The city had turned on the irrigation water and it had been flowing into our house for...who knows how long. We tried watering the basement to see if it would grow, but no luck.  Disaster clean up came finally at 2:00 a.m. only to tell us it was too big for them that night and they would need more equipment and men. It is considered a contaminated water source so everything is a loss. Carpet and pad, doors, base boards, a bit of wall, furniture, many toys, nearly everything. They have to spray everything down with antimicrobial spray, dry it with big fans, and then replace it all. Luckily, most of Tommy's stuffed animals were on his bed, so all is well with him. So we cleaned out Jain's playroom and moved her toys into her room and the boys have makeshift beds in her bright pink playroom.  They love that.

my lovely basement

On Thursday morning, I fly out to San Diego for my nephew's wedding. No kids, Only me, the ocean, my very own room in a nice hotel, and a fun wedding with fun family around. Ahhhhhhh. I just have to keep that in mind as I deal with my STINKY and messy house.
And I survived driving to Arizona so this is nothing!

My Sweet Boy

I know it has been a long time since I posted and I may or may not catch up. Most likely not. I'm too lazy.  But I just had to write down what Tommy said tonight.
I had a banana that was getting old and so I made banana chocolate chip cookie dough to freesze. You never know when somebody might need fresh baked cookies and I like to be prepared. Okay, I never know when I might need some. Anyway, Tommy likes to lick the beater paddle, so keep in mind that he was eating the dough made by ME while talking.
We were discussing how strong his teacher is because her fiancé passed away this past December, yet she still is a happy and sweet teacher. I told him that Heavenly Father must know that she is strong. He asked if Heavenly Father knows when bad things will happen. I told him that, yes He does. For example, He knew I would have a stroke and He had the power to stop it from happening, but He knew that we were a strong family and we would get even stronger with hard times.
He then said, "He let you live so I'll just do whatever you're like. If you can't do some things, I'll just go with it. I don't care how you look, I just care that you are alive."
Seriously? How did I get so lucky?? I told him that was so sweet and it made me cry because I was so happy.

Happy Valentines Day!!

Yet another blessing. Jain got hurt at school on Thursday and her teacher called me to come and get her. It was nothing too serious. I was able to go get her and give her chocolate milk and snuggles. It is just these little things that would not even matter to most people, that make me realize, once again, how truly blessed I am. I was there to pick up my girl from school. I was there to pick up my girl from school.
I knew she must be hurt because she missed the Valentines day party at school. Sad little girl.

Wendy made her adorable outfit.

I'm actually quite proud of her hair. It took way too long and she was very patient with me.

I got to help in Tommy's class on Valentines. I haven't been able to do that-well-ever. For any of the kids. I really didn't do anything but bring ice cream but Tommy was totally excited for me to be there and it was fun to watch the kids.

He said he didn't work very hard because his imagination did it all. Some of the kids in his class were very hesitant while putting in their cards-They were a bit afraid that the monster would "get" them.

Does it get better than sweet little boys/friends?

I had a heart shaped pizza (Papa Murphey's), red V8, and pink and white donuts (Krispy Kreme) for our dinner. Yeah, I was lazy, but the kids thought it was cool.

On Saturday, Robert and I went for our romantic dinner. Okay, it can not be overly romantic at Red Iguana, but whatever.  The food is good. Plus, the 45 minute wait isn't so bad when the handicapped parking is directly in front of the door, so we just cracked the sun roof so we could hear, and watched an episode of The Simpsons while we waited. Could it get more romantic?

I had the sister missionaries over to lunch this last week and they shared this video with me. I loved it! I hope you do, too.
Courage

Roberts time

Wow!! It's been a crazy few weeks! But we are all safe and sound.
First, Roberts dad is much better. Or worse. It all depends on the moment. The stroke really messed up his vision and that is huge for him. He is able to see most things directly in front of him but it's as if someone drew a line down the middle of his eye and he can see nothing past that. It has made watching T.V. or driving, etc. impossible.  He has to go for an Angiogram later this month. His doctor said it was a relatively new and experimental procedure to put stents in the vessels at the base of his brain. Sounds familiar. It's the exact same procedure I had complete with all the paperwork indicating that it is purely experimental. The same one!! Seriously, what are the odds?  At least he knows that it can work.
His behavior is very much like mine was and Robert has been able to relate to what his mom is going through. Papa is very anxious and can't handle even small changes like the way Roberts mom chooses to drive home. His emotions, both good and bad, are right at the surface and he has little control over their appearances. I remember bursting in to tears while discussing medications with my doctor. Yep, Vitamin C and Plavix are super emotional subjects. He is having trouble taking in information and processing it and he has many "huh?" moments. For instance, he talks about walking into the bathroom and not knowing where the toilet was. don't worry, he remembered.
Even though the physical aspects vary, his emotions are so close to what mine were and in many situations, still are. Fear, anger, depression, denial, hopelessness, and more fear. Other emotions come and go but those were the most prominent, especially at first. Soon the acute stage ends and other emotions start coming, like determination, frustration, elation, joy...
After something like this, life is never the same. It just isn't. But soon the realization hits that life goes on and is wonderful.
I spoke to my rehab doctor, Steven Edgley,  just recently. He had a stroke 8 years before mine (so he was 28 ish) and told him that life can be wonderful after a stroke. He smiled and replied that it can be even better after a stroke. (I have a tremendous respect for that man for more than just his medical knowledge. He really is one of the elite, GREAT, men in this world.)
So, with this happening, Robert has been a little stressed. Here was his schedule during that first few days:
Thursday: drive to NV for a soccer tournament for Aleq
Saturday: while still in NV, he got a call from his mom that his dad was in the hospital. As soon as he was able, he made the 6 hour drive back and went straight to the hospital. He came home around midnight.
Sunday: He got up early and spent the whole day at the hospital.
Monday;  He took off work and helped bring his dad home.
Tuesday:  He got all of us dinner and spent a lot of the evening with his parents.
Wednesday: See Tuesday
Thursday: I had a friend who needed me so I left him to feed the kids and hang out all evening with them. He actually loves daddy nights but still.
Friday: We had play tickets but when he came home I was lying on the floor in SEVERE pain on my right side so up to the ER we went. More later but I got to come home late that night.
Saturday: His mom thought she was having a heart attack so he was back up at the ER. (Instead of calling 911, she called him. ???) Turns out it was pain in the muscles.
I finally broke down sobbing on Saturday.  He can't keep this up! I don't see things getting better with his parents (I love, love, love, them but I love him more so he comes first) and although some people think otherwise, I am faaaar from 100%. He can't take care of everybody. He needs help. Our neighbors and ward and even my family have been wonderful but even still, I'm afraid what will happen if he keeps up this pace. Maybe a week or two in Hawaii would be good.
Anyway, about my trip to the ER: Before we went I told Robert that it felt like something was exploding inside of me. Turns out I was right. It was an ovarian cyst rupturing.  Harmless but painful. But I had never had one so we were afraid it was my appendix.  But all is well.
Funny story. I started back on Ambien the other night and the first few nights are always interesting on that stuff. On the first night, I had a dream in which I was crawling across the bed. In actuality, I was right on the edge of it. You guessed it, I fell out. I woke up when I hit the ground. Nothing got hurt but my pride. When I told Jain, she said it was the funniest thing she had ever heard.  I kinda agree.

I read this last night and I totally loved it.

"But today as I stand before you and think back over that great march, I can say, as Sister Pollard said—a seventy-year-old Negro woman who lived in this community during the bus boycott—and one day, she was asked while walking if she didn’t want to ride. And when she answered, "No," the person said, "Well, aren’t you tired?" And with her ungrammatical profundity, she said, "My feets is tired, but my soul is rested." (Yes, sir. All right) And in a real sense this afternoon, we can say that our feet are tired, (Yes, sir) but our souls are rested."   Martin Luther King Jr.

I have to admire her quick thinking! And her spirit!!

Papa

Roberts dad had a stroke yesterday. It was mild but they said it could have been much worse if he had not come quickly to the hospital. He has lost much of his vision and that is causing him a lot of anxiety. He is thinking that he is no good if he can't see and that this is the beginning of the end.
 I sat my kids down and told them. I told them it was not like mine and that Papa was okay. But they heard the word STROKE and they knew it was serious. I had to also tell them that it was not okay to joke about. That is a big difference for them because we joke about mine all the time. Jain doesn't even think of it as a joke when she calls me her stroke mama. It's just who I am.
I have always used humor to deal with things. If something is too serious to joke about then it must be awful. Laughing helps me know that either things are okay or they soon will be. For a while after my family learned that I had been abused, nobody joked about it. For a bit after my stroke it was the same.
For Roberts dad and all of us around him, it's much too soon for laughter. It's too raw.
But, at least for me, there came a time when the seriousness became like a dark cloud around me. It was almost scary. But let me be clear, some wounds are too deep to ever be joked about. But few things can relieve tension or dark clouds like a good laugh.
1.  skip was my dentist and eventually lost his dental license. Now whenever someone in my family needs a dentist, someone always tells us that they know somebody who will work cheap.
2.  Once as my therapist was helping me use my walker, she said the word hospital. It reminded me of a line from the movie "Airplane!" and I jut stopped in the middle of the hall and shook with laughter. The others around me had no idea about what I was laughing but they started to laugh because I looked and sounded so funny.
3.  When I was in the hospital and unable to speak, I finger spelled the word twice  to my mom and niece, Kaitlyn. Neither one of them could get it and they kept saying twiky? It was frustrating but also hilarious!

So no, now may not be appropriate to laugh or joke, but soon we will laugh again. Right now, though, Roberts mom and dad are in that awful first stage of...I don't even know how to explain. Fear? Unknown? Shock? Denial? A sliver of hope that you don't dare really focus on? And seeing Robert hurting just takes my breath away. He was out of town when he heard and hearing him cry over the phone was heart breaking. I wanted to reach through the phone to hug him. Please pray for him. Pray for us all.

Strokes are not funny

Today I was chatting with my mother-in-law about the people in her life who have had strokes and it made me realize once more just how many loved ones are hurt by them. Let me reiterate again (that redundancy was for my dad, one of his favorites) that there is NOTHING funny about a stroke. It kills, disables, and at the very least, scares the hell out of people. Not in the least bit funny.
That said, there are times when a good laugh is exactly what I need. As I have mentioned before, there are times when I can either cry or laugh. Take your pick. I'm not going to lie. At times I cry. A lot of times I cry. Sometimes I want to cry but I am just too busy or tired. But mostly, I choose to laugh. I mean, some things are just so absurd or ridiculous or whatever, that I really have no choice but to laugh. For example:
My cousins daughter asked her mom why Jodi talks like this, and then skewed her mouth up and only used one side. She is 3. No malice, only curiosity. How can I not laugh at the image of that?
My other cousins, Amy, has a son who has Autism and we often talk about the fact that people treat her son or me as if we are either made of glass or are contagious. Yesterday, her baby wanted a taste of my drink. Amy got him his own saying that she did not want him to share with me because he might catch my strokiness.
I recently tried playing an Xbox Kinect game with my kids You can imagine how that went.
Jain hates when I sing to her. Bedtime is fine but that is all. So I HAVE to do it to bug her.
See? Some things are just funny. Sick maybe, but still funny.
But the stroke itself? Not funny at all.
Having his mom talking about strokes made Robert start talking about some "highlights" of his memories. For example:
I was on a lot of blood thinners. Seriously, my blood was probably thinner than water. After calling him late at night to tell him I had stopped breathing so they had to put in a trach, they called him again to tell him they could not stop the bleeding from the incision. No wonder he still doesn't sleep well.
When my first feeding tube popped out, I was really nauseated, but throwing up was a problem because it could go into my trach and because I could not cough, I could aspirate and get Pneumonia. The lady in my room kept talking about the food they were serving or what candy she should get. My mom had nicely explained that I was very sick and we were doing everything (even sniffing alcohol wipes) to avoid throwing up, but she seemed incapable of shutting up. So I did some interesting finger gestures. I don't remember this and luckily there was a curtain between us, but Robert and my mom saw it. He still calls me his sailor wife.
I also flipped off a therapist who wanted me to get out of bed around this same time. That one I do remember. I could not talk and I was dizzy and sick. I did stand for her and even sat in a chair as she requested. Then my BP dropped and I remember my mom yelling for help and nurses running in and quite a bit of excited activity until I was stable. I stand by that particular gesture.
He also remembers my super fun stay in IMCU. My feeding tube had popped out of place so all my meds and food were just going randomly into my body. When they tried to place it again, they put it in my lung so another surgery was needed to move it. Then I developed an infection throughout my whole body (results of meds and food going everywhere) and they had to place a drain in my back to help drain some infected fluids. Then my stomach shut down completely. Robert asked when it might start working again and was told, "probably never". Then my muscle started to contract from lack of use, and my toe started to point down like a Barbie. That never got better and required yet another surgery to fix it. Visitors were very restricted and absolutely no kids were allowed. I was bored out of my mind but too sick to remedy that. I could not write or talk and not any of the night nurses knew sign.That was the longest 3 weeks!! 
But the nurses there were some of the best! They were kind and gentle and treated me like an actual person, not just a silent patient. We had many "Conversations" in which I learned about families, girlfriends, illnesses, accidents, etc. I never uttered a word but I felt very close to those nurses.
After reminiscing about the good old days, I needed some serious snuggle time with my critters. That and some Candy Crush Saga. Cleared another level today.
And for today: MLK

I'm Famous

It has been a long time since my last post. Really no excuses, I haven't even been super busy, just tired. Every time I look at my computer I just feel exhausted. I have been like this for weeks, only wanting to do the necessary activities and then reading or playing Legos with the kids or even just watching TV with Robert. I am thinking that a. I'm lazy b. It's winter and I just want to stay home and be warm c. The stroke is still causing general fatigue or d. I'm lazy. It's probably a combo.
Anyway, Christmas was really fun. Being sick in November and having nothing to do all day but shop on the computer really made the season a lot less stressful. The kids were thrilled with what Santa brought and loved hanging out with all the cousins. Like Robert says, someone sneezes and my whole family gets together.
We got real with Aleq. He was not at all surprised (school) and seemed to relish being in the know and helping where we needed him. Our  motto around here is don't ask questions around Christmas. Things may come in the mail or wrapped gifts from Grandma may appear under the tree, but we always refrain from too many questions. Aleq was a big help with this and never let any of us forget it.
Our 14th anniversary was on the 29th. We celebrated on the 28th with dinner at our favorite restaurant, the ever so fancy Red Iguana, with out good friends, Scott and Karen. I think Scott and Karen take us along so they can get good parking. The Handicapped space is directly in front of the door so we can just wait in the car for our name to be called. Even with the car off it's still warmer than standing outside. And after 14 years, Robert and I not only still really love each other, but we actually LIKE each other. We are a team. We have whole conversations that are nothing but movie lines or inside jokes and totally understand each other. We can be at church or the store or whatever and hear something and both burst out laughing or roll our eyes or just nod to each other because we both thought of the same thing. I still count the hours until he comes home from work and I always feel just a little happier knowing he is here, even if we are in different rooms. I'm glad families can be together forever.
New Years was again spent with my family but because most of the kids are little, the party ended at about 9 and at midnight all 3 kids were asleep and Robert and I paused our movie just long enough to wish one another Happy New Year. We could hear the fireworks and noise makers but I was just hoping the kids stayed asleep. How old and lame are we?  
Now the kids are back in school, Robert is working regular hours, and the house is quiet for about 3 hours a day (1/2 day kindergarten) and though I love them all and like when they get home, this is my time and I sure like it!!
Lastly, just today I got an email from the National Stroke Association that they published my story. I'm famous. Okay, not all that famous. It is on the NSA website and I'm not even totally sure of where on there I could find it, I just have a link. But it's as famous as I'll ever get so I'm taking it. The picture on there is exceptionally bad because I was only looking at thumbnails. Now that it's bigger...I HATE IT. But whatever, I'm published. Kinda. http://www.stroke.org/site/News2?news_iv_ctrl=-1&id=17853