Hope4Peyton

Today, some 200 days after my wife’s stroke first occurred, something special happened.

She was able to give all three of her kids a 2-armed hug.  She couldn’t feel that it was happening with her right arm, but they could.  She had to be able to see where to get her arm, but each of the kids still got to feel both arms around them for the first time.

Pretty monumental in my book.

So, let’s see, there’s been a ton of activities going on of late, that I wanted to update you all with, but honestly, life is still pretty full for me, and I just haven’t had the time.  Apologies.

About 2 weeks ago, Rachael had a birthday.  Due to schedules, the slumber party didn’t happen until last week.  Anissa wrote about it here.  I’d like to offer up a slightly differing explanation of the night.

Rachael LOVES to cook.  So, we thought we’d do a birthday party where the kids got to make something.  We picked personal pizzas and also got individual butterfly cupcake molds for the event.  Invitations went out, folks RSVP’d and excitement started to build.

This was another one of those fairly monumental events.  I get a little sad when I think of all the special events we’ve missed out on as a family the past 6 months.  For me, this was a sign that we had hit a milestone.  Once again, we were going to be a reason for the big smiles on our kids’ faces.  Anissa was still in a coma when Peyton’s last birthday happened.  Nathaniel’s happened while we were still in patient at Shepherd.  Rachael’s was going to be special.

With that in mind, we shipped Nathaniel and Peyton off to my mom’s for the night, so that night could be all about Rachael.

At 5:00 I closed up my laptop as sweet little 9 year old girls started filtering in, one by one.  We got to spend some time meeting the parents.  There were 6 girls in total.  I gave them 2 rules:  No squealing unless they were hurt, and have fun.  Throughout the night, they accomplished both very well.

Right around the time we got all the ingredients out in bowls, my phone rang.  It was work, and it wasn’t a good call.  It was one of those that fall under the “it’s going to be a while” category.

I stepped outside for quiet as Anissa started wrangling the girls together.  Through my back porch window, I watched as she got the oven warming up and got the girls to get things out on the table.

I kept peeking in as the pizzas were in various states of completion.  There were mounds of flour and ear to ear smiles everywhere.  Anissa was rolling around, helping each little girl, making sure each one was involved.  I came in and put the pizzas in the oven and took them out as needed.  Thank God for the mute button on the phone.

When my call with work was finally over, and the girls had moved on to makeup and movies, I went back inside.  Anissa was trying to clean up after the mess.  Our table was covered in flour, pizza dough, sauce and toppings.  The kitchen was a wreck.  Anissa was rolling around trying to figure out where to start with the cleanup, one-handed….and she was crying.

I shuttled her in to the bedroom to find out what was wrong.

Through tears, she said she felt like she had failed because she wasn’t able to be as involved as she was pre-stroke.  I let her cry for a minute, then told her how I saw it.  I saw it through the eyes of our happy daughter….who was THRILLED that her mom was there to meet all her friends and have a good time.  About that time, Rachael wandered in and gave Anissa the biggest hug of thanks I’ve seen.

We wound up having to make 2 sets of butterfly cupcakes, because the first one just didn’t turn out.  Each little girl got to decorate their own cupcake.  It was literally perfect.  Each girl got to stamp their own individuality on the cupcake.

It took me a day to get the dining room and kitchen back to normal, but that’s a small price to pay.

As far as progress goes, we’re still improving daily.  Not a day goes by that I haven’t seen something improve.  Today it was that she was able to raise her arm at the shoulder high enough to give a slight hug.  Yesterday it was that the double vision in certain areas is improving.  The day before that, she was able to straighten her leg out fully while seated.  Still not a whole lot of movement at the ankle or wrist yet, but we’re getting there daily.

I almost forgot.  On Monday, I finally taught Peyton how to ride a 2-wheeler!  She wants to show it off for everyone now!  One more parenting thing I was able to reclaim.

On a different note, after what feels like an eternity.  I FINALLY got the application mailed out to ABC’s Extreme Makeover: Home Edition.  It took forever because I simply don’t have much in the way of spare time these days.  I included the videos you guys have made (the Glee one and the Helping Hands one), as well as our own little versions of humor.  We had fun doing it, and I hope that shows through.  If they pick us, GREAT!  If they don’t, well, at least we tried, and it helped take my mind off of things for a while.

So, if our story has touched and/or helped you and you’d like to let them know, we’d greatly appreciate it.  The address is:

Lock & Key Productions
C/O Family Casting
P.O.Box 38670
Los Angeles, CA 90038

(OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!OH PLEASE!)

You all are very special.

There aren’t enough words to say what I’d like to say.

So, I’ll simply say “Thank you”.

There have been many folks who have helped us get to where we’re at.  I truly believe that without their help and support, we wouldn’t be here.

At the drop of a hat, moms from all over the world helped my family…and are still helping.

They adjusted schedules

They stood in for their friend in her family’s time of need.

Those who couldn’t come, helped in so many other ways.

Some made us laugh.

Some made us cry.

And they never quit.

Some brought their own kids and husbands with them, some left their kids and husbands at home.

They simply came.

Some stayed diligently by Anissa’s side, letting me spend some much needed time as a dad, when my heart was in an ICU room.

Some came and made my kids laugh, letting me spend some much needed time as a husband in that ICU room.

There were moms that were, moms that are, and moms that may be.

Each and every one of you was instrumental in helping our family.

For that, I thank you.

Then, there’s my mom.  She’s an amazing woman.  She’s an awesome grandma.

She had to stand in and be a mom again, 30 years later.

Play dates, car line, bumps and bruises, she had to do it all, and she did it quite well.

I know I don’t say it enough, but thanks mom!  Love ya!

Then, there’s my wife.

She too is an amazing woman.

She is what makes this family go.

Being without her for a few months was indescribable.

We’ve almost been home as long as we were apart.

Every day, she’s making progress.

Every day, we’re getting closer to being a complete family.

Every day, she inspires me.

Ok, so there’s a couple of people who’ve pinged me for help recently, either cancer or strokes.  I sent them essentially spam, as the thoughts occurred to me, and kept emailing them.  I don’t want anyone to feel as helpless as I felt sitting there in the oncologist’s office, ER, ICU, or where ever, wondering what was next.

Just the other night, I saw that Bret Michaels from Poison had a severe brain hemorrhage.  I was on a phone call with work, and I saw “brain hemorrhage” pop up in the ticker on cnn.com.

I was in mid sentence and literally stopped, never completing the thought.

In an instant, all those memories came flooding back.  I know what his friends and family are going through.

It’s not a happy place.

I’ve been kind of careful about what I read online.  I don’t want to know potential limitations at this point in the game.  I don’t want to know about “expected” results.  I just want to know about what has worked in the past.  Playing doctor google can be depressing.

I never want to know the ceiling of anything.  Why put a lid on anything that you don’t know for absolute 100% certainty?

May is National Stroke Awareness Month.  Chances are that someone you know will be going through what I’ve been going through the past 5 months.  Without sounding too preachy, I’m going to do a series over the next couple of days with tips for folks who may find themselves in my situation.

They’re not 100% certain on the reasons for Anissa’s stroke.  The doctor at one point told me that she even focused on the zebras instead of the horses.

Nothing really added up.

Their best guess as to why she had the stroke is blood pressure and the fact that she wasn’t taking care of herself.  After the first stroke in 2005, Anissa had been really pretty good about napping.  I encouraged it.  The months prior to her most recent set of strokes, she was getting busier and busier and not taking care of herself.  The naps got shorter, or simply didn’t happen.

She was going, going, going.

How many of you moms and dads out there are always going, going, going?

For your family’s and your own health’s sake:  STOP.

Smell the roses once in a while.

Quit looking at your retirement fund and hang out with your kids with no pressure to go anywhere.  Wear sandals and a Jimmy Buffett shirt.  Sit down with your spouse, get a cup of coffee, and just watch the world go ’round.  Hug a friend.  If you think about a friend you haven’t spoken to in a while…pick up the damn phone and call them, let them know you still think about them.  Life is too short for animosity.

Is it REALLY going to be the end of the world if you’re late with that xyz?

Sorry, I got off on a rant.

By the way, Sandi comes in tonight.

The same Sandi who came and stayed with us twice before.

The same Sandi who had a pizza party with my kids when we were all at a low point, allowing me to go have a quiet “date” night alone with my wife while she was still coming out of the coma.

The same Sandi who brilliantly figured out that the therapists in the nursing home simply weren’t understanding Anissa’s humor and were mis-diagnosing her mental state as homicidal or suicidal.

This time she’s coming with a mission.  She’s been having dreams that she’s going to get Anissa up and walking to some extent.  About a month and a half ago, she called me and said she needed to be here for that.  Based on where Anissa was at that time, I was thinking Sandi was way too early.  Due to life, our schedules just didn’t mesh until this coming week.

Last week, the therapists mentioned we may try to start walking with a walker pretty soon, maybe as soon as next week.

No pressure Sandi.  😉

I missed some time in there, so I’ll post a couple of tidbits from the past weeks.

I had planned to post on Easter.

I think a lot of stroke sufferers (is that a word?) tend to stay inside a lot.  It’s somewhat embarrassing to go out and do things with folks staring and all.  But, you learn to live with it.  Walk through a mall with a kid balder than Kojak and you can handle any stares.  We have been out a fair amount:  grocery shopping, Ikea, the aquarium, the park.  Anissa hasn’t been able to do loud places too well yet.  It’s literally over stimulation for her at this point, so we go during off hours.  Church has been avoided.  It doesn’t mean we don’t still worship, it just means we haven’t been to church in a while.  I still say that it’s important to worship on Sundays, but it’s also important to live it Monday through Saturday as well.  So, Easter Sunday…we snuck in a little late to church and snuck out a little early during the singing.  It was a packed house, which made it difficult, but we made it, and called it a success.

After church, we went out to lunch.  When I first suggested the place, both my mom and my wife kind of turned up their nose.  The kids were ecstatic.  My choice for Easter lunch?  None other than Golden Corral.  Remember how I said everything is therapy?  Remember how I said she couldn’t remember the tastes of certain foods?  Name one place better than an all you can eat buffet for that kind of situation.  She wanted to try every piece of pie there.  It turned out awesomely.

The kids were all dressed up, we were all dressed up, it felt a little bit like we were sliding back into our version of normal.  A good time was definitely had by all.

We’ve just got an extra pair of wheels these days.

I had planned to post on our anniversary.

That came and passed last month with a simple little, “Happy Anniversary” said across a couch.  Best damn present ever.  Twelve years ago that day, we had a simple little ceremony.  My dad performed it.  We were so broke then.  The rings cost a combined $75 from a pawn shop.  Our wedding song was, “Feels Like Home” by Bonnie Raitt.  In my eyes, it was the perfect culmination of a lunch date that turned into forever.  We never really did have an actual honeymoon.  Still haven’t.  Never really had the time.  I’m kind of targeting our 25th anniversary for something.

Among others, our son, Nathaniel, was there in all of his bundles of chubbiness.

Don’t you judge us!  😉

Seriously, though, we had what some would call “family pressure” to get married before the baby came and it was a conscious choice on our part to not get married because others wanted us to.  Instead, we wanted to make sure it was right for us.  Long story short, and a couple of ticked off family members later, it was, and the rest, as they say, is history.  In my opinion, the best marriages are those that happen for the right reasons, and only time will tell if that’s the case in any situation.

We both agree that we’ve got a pretty good thing going on here.

I had planned to post when we made a definite decision on something big:

Hey Blogher10!  We’ll be there!

But no.

I never posted those things as they happened chronologically.

Instead, I waited until today.

Why today?

Because something amazing happened on Thursday and today is the first time I’m really getting a chance to tell about it.

How’s that for a lead up?  Originally I had this post and the previous one together.  Sorry, but I’m lamenting…and apparently producing War and Peace these days.  Aren’t you glad I split it into 2?  Anissa says I’m too long-winded and it should’ve been 4.

I had planned on taking 2 days off of work Wednesday and Thursday.  It didn’t work out exactly as planned on Wednesday, but on Thursday I was bound and determined to relax.  So, I dropped Anissa off at therapy and went hunting for a book store.  I wanted to relax with a cup of coffee and browse some magazines, and just take some time for myself for an hour or two.

That’s all I wanted:  A mini-breather with zero demands on my attention.

So after I dropped her off Thursday morning, I went in search of a Barnes and Noble or Borders, or something like that.  I went in 4 directions at the height of rush hour.  Wasn’t all that exciting.  So, a little dejected, I swung in to a Dunkin Donuts and asked if they knew of any book store.  They pointed me across the street to a plaza.  I swung over there and saw the place they were talking about.  It was a little hole in the wall book store.  They weren’t open until later, so I waited.

As I was sitting there, checking emails, I noticed an acupuncturist shop.  I figured what the heck.  Let’s go talk to the guy and see what he can do.  The acupuncture we tried before had minimal benefits, but I still had it in my head that we needed someone dedicated to their craft, not an M.D. who practiced acupuncture.  So, figuring I had nothing to lose, I went in and talked to the guy.  Turns out, he’s a second generation acupuncturist, been doing it for a while and has had success with stroke victims, AND he had an appointment open right after Anissa got out of therapy.

I picked Anissa up from therapy and explained that we had another appointment to get to.  She wasn’t all that thrilled and argued that she didn’t want to go.

I asked her to simply trust me.

The night before was particularly overwhelming to me, and when I went to bed, I prayed for some more progress in her leg and arm.

We got in there, and she was very apprehensive.  The acupuncturist explained a few things to her, and examined her, and then got to work on her.

After one session, we had the following effects:
– straightened her jaw out.
– Got her tongue working better, improving speech.
– She was actually able to feel when she moved her right leg.  It’s been guesswork for her until now.
– She was able to open her mouth wider.
– She was able to raise her leg farther.
– Improved feeling/sensitivity across the board, in her face, leg, foot, arm.
– And, I finally I saw her ankle move.

We’ve got a second treatment on Wednesday.

I’m pretty pumped with those results.

Her spirits are still pretty good.  There are moments of weakness, but those are to be expected, and we’re handling it all pretty well.  She’s now pushing off with her right foot to stand up.  Once she gets up, she’s not able to fully straighten it out and lock the knee yet.  Her left eye won’t look left yet, so she still wears tape over part of the glasses to decrease her double vision.  Her right arm is coming slowly.  She’s able to pull it down, and arm wrestle a bit.  Movement on her arm is one directional, which is confusing me.  She’s also able to squeeze her fingers some.

I think that bit of success finally gave me that second wind I’ve been searching for.

More importantly, it feels like we’re just starting to crank up the diesel.

In case you missed it, Anissa started writing again.

I’ve been a tad occupied with work, kids, wife and all things in between, so I haven’t posted lately.  Apologies.  I also wanted her to have a chance to get her “voice” going again.  She’s going to write over there, and I’m going to keep writing over here.  I need it.  It’s my only real therapy that I make/have the time for.  It’s been too helpful for me throughout all of this.  I can’t guarantee the frequency with which I’ll post, but stay tuned true believer, I won’t quit.  I may move to my own blog for other things later on, but right now, my family is still in need of our lighthouse beacon, so I’m writing here.

You guys should see my cutting room floor, also known as my car.  Not sure if I’ve mentioned it before, but I’m literally the son of a preacher man.  I remember driving with my dad to church on Sundays and he’d be writing his sermon while in the car.  He was a procrastinator ahead of his time.  Probably the first ever texting/driver.  Not that it’s a good practice mind you.  He once got pulled over for going too slow.  Anyway, the point I’m trying to get to is that I think about writing when I drive, mainly because I learned it from watching my dad.  I’ve been working on an “I talk it types” sort of thing for the car off and on.  It not being a finished product, I’ve got to improvise, so I simply think when I drive and jot down notes later in the day.

I had planned to post a few weeks ago when I started running out of mental gas.

After my last post, I got a text from a friend of mine who sat next to me in kindergarten, (technically he spit in my face on that first day…he’ll say different…but he’s wrong), and we’ve been friends ever since.  The point is, he’s one of those life long friends who tend to know you better than you do.  Among other things, he said, something along the lines of, “hey, I know it’s probably not as rosey as it seems, but…”

Well.  He’s right.  It’s not perfect.  It probably won’t be perfect for quite some time.  By my estimate, if this were a football game, I’d say we’re just finishing up the first quarter…of course that first quarter lasted 5 months…do the math…I’m a little burnt out, but beginning to get my second wind.  This may sound strange, but for the past few months, health-wise, I’ve felt pretty darn good.  I’ve been eating well, but not sleeping well, or just unplugging and taking time for me.  Mainly because I can’t.  I don’t really get to.  Ever.  If Anissa doesn’t need me, it’s the kids, or work, or some emergency of the day.  We have had friends cycling through here on and off.  Right now, I’ve got fairly good coverage through May 21.  It gets spotty after that.  The thing about it though, is I want to make sure the person coming in is able to handle everything we’ve got going on.  As much as they help, and they do, immensely, I have to explain things to everyone, and every week, it’s someone new  for the kids to get to know, and for that person to get comfortable with being around Anissa.  Plus, we’re dealing with a moving target on her getting better.  It’s not like I can write up a standard “Care for Anissa” Handbook like I’d do at work.  Generally, I’m asleep by midnight-1, up by 6-ish on therapy days.

Here’s a typical therapy day:  Wake up, shower, get the kids moving, get the wife moving, swallow coffee…ah sweet coffee…make a mental checklist of stuff to do that day, get Anissa’s meds, pack the lunches, get the kids to school, take Anissa to therapy, go to work, pick Anissa up from therapy, drive her home, get her in bed for a nap, breathe, kids get home from school, hug, log back in to work, work until dinner while making sure homework is done and hooking her up to an e-stim device, sign agendas and check homework, get the kids in their bath, enjoy decaf….ah sweet coffee…get kids in bed, get Anissa a bath, get her in bed, give meds, put on her splints, turn out the lights, breathe…what was that emergency at 4?  Re-read emails to figure it out, look at bills, turn on the tv, pass out halfway through a 30 minute show, wake up to infomercials, think about buying something, remember that souring laundry, stumble to bed.

Repeat as necessary.

Things to remember along the way:

– Your kids are watching you.  Set a good example.

– Take time for you.

– Dream once in a while.

Exhaustion is a common phrase experienced around the Mayhew household these days.

I was talking to my aunt Eileen about this a few days ago, trying to explain what I’m going through.  She asked me what I thought would help.  I thought about it for a minute.  I could think of 2 things off the top of my head, only one of which is remotely feasible:

Work with me on this one.  When I was younger, I played soccer in my home town of Owosso, MI.  I played it for about 20 years, give or take.  I haven’t been back in years, but I think I still have the record in my high school for the longest goal.  I got lucky and caught a pretty roller at the right time and absolutely drilled it into a driving rain from midfield.  It caught the goalie by surprise and I got my name in the paper on a big win.  I was literally just trying to get the ball back in front of the goal so one of our guys could do something creative.  In all honesty, when I played, I was probably mediocre with an occasional flash of brilliance/luck/dirty play at best, but I always played with passion, raw emotion and fun.  I think mainly because that’s when I felt the most free.

One of the first games I remember, I was on a very young (probably 8 or 10 ) travel team that went to the big city and got crushed 26-0 or something like that.  Friggin Saginaw and their pretty uniforms.  A few years later, the core of our team had pretty much stayed together, but we were still getting beat by the really good teams.  Until one day, when we were probably between 14 and 16, we got a new sponsor, a new coach, and a new mindset.  The sponsor was US Brick, and they donated these el cheapo t-shirts with numbers on them.  No names, just numbers.  I still have mine in the closet I think.  We had to wear our own shorts and socks, so we looked like a rag tag group of misfits compared to the teams we were playing against.  Even worse, we played like a rag tag group of misfits too.  After watching us practice/goof off/fight amongst each other a few times, the new coach huddled us together and said that we simply weren’t good enough to play on this big field.  I think his exact words were that we didn’t deserve to be there and we needed to go over to the kiddie field across the street.  Some guys left in a teenage huff.  Some of us listened, and begrudgingly went over to that little field.  It had the dinkiest little goals, and the field itself was tiny and uneven.

Over the next few weeks, that was where we started figuring things out on our own:  how to get open, how to be extremely accurate with our passes, how to handle the ball very well, how to cover and recover, and how to bend/break the rules without getting caught.  We also started liking our rag tag look and sponsor.  It fit us.  That “Brick” became the nickname of our defense, and we tended to take on that mentality when we played.  In short, that’s where we gained some self respect and learned to be a team.  It didn’t matter what else was going on with your life, some kids’ parents were getting divorced, some had lost their jobs, some had other things to deal with, but not on that field.  That’s where friendships were forged.  Over the years, that field meant the world to us, spring, summer and fall.  It was our little haven.  It was a place where we figured things out on our own.  Our sandlot.  It’s where we learned to stand on our own 2 feet and not be pushed around.  It’s where we learned to hold our own.

That’s not always an easy thing to do in any life situation.

I’d give anything to be 16 again and to be able to just go play ball with those same guys for an afternoon right now.  Just play until we drop, then sit around, drenched in sweat, chugging gatorade and talking about life or the game or whatever.   Of course, I’d probably have a coronary if I made one run right now, and it’d be WAY slow.

Seeing as how being 16 isn’t exactly a possibility, I’m going to apply for an Extreme Home Makeover.

That’s the kind of help that would really make a difference.  Maybe get some decent therapy equipment in here, or maybe help pick up the tab on the rest of our outpatient therapy.  Maybe help her being able to tuck the kids in at night, or help me not bang her into every damn doorway in this house.  I don’t know.  I just know that the 40 days of therapy per year is coming up awfully soon and we’re not ready yet.  I have the written application finally filled out to completion.  I’ll be including the videos you guys have made for us over the past few months.  If anyone wants to do a nomination video, I would greatly appreciate it, just send it over to me at peter.mayhew@gmail.com.  I figure it’s worth a shot and maybe we’ve got a 1 in 10 chance at it.

I don’t have all the answers on this one, but I’m just trying to figure it out as I go and learning to stand on my own 2 feet in yet another life challenge.