Milestones 6 Jun 2010 3:16 PM (14 years ago)
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!)
Moms 9 May 2010 6:54 PM (14 years ago)
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.
Public Service Announcement 28 Apr 2010 4:40 AM (14 years ago)
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. 
More of This and That 20 Apr 2010 2:56 AM (14 years ago)
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.
This and That 18 Apr 2010 11:01 AM (15 years ago)
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.
anissa is writing somewhere else. not like pete. at all. or with body hair. 6 Apr 2010 6:17 AM (15 years ago)
Many have been confused. so I’ll clear things up.
This is Anissa, by the way.
We may have heard of each other.
My husband Peter is writing out his thoughts here at Hope4Peyton.
i just started back at FreeAnissa and working backend at Aiming Low.
I write sort of slowly compared to Pete.
I don’t tell stories the way he does.
So maybe the only thing we have in common is the strokes.
And squirrels.
I Need a Vacation 14 Mar 2010 11:25 AM (15 years ago)
We’ve been home almost a month now, and are slowly getting into the swing of things and a routine.
Here’s a list of the top 10 things we’ve learned since being home:
10. It’s HIGHLY important to make sure the locks on the chair are engaged…especially on hills.
9. You can actually chase a pea around your plate for 20 minutes.
8. People stare in stores. It’s a moral imperative to scare them.
7. Tickle therapy works wonders!
6. Ice cube therapy not so much.
5. Fear-that-you’ll-be-dressed-like-a-James-Bond-girl-for-the-rest-of-your-life therapy works too!
4. Never watch anything with a split timeline (15 minutes of the first episode of Lost nearly sent us back to the hospital)
3. Throat punches are an effective anti-therapy
2. It is not appropriate to yell, “I am Cornholio!” in your best Beavis voice when she gets stuck taking her shirt off.
And the number 1 thing we’ve learned since being home is:
1. No matter how disabled they are, never, EVER, ask a woman to give up some of her closet space even if she can’t get in there in the chair.
Anissa’s spirits are still as high as ever. I think mainly due to the constant variety of things going on.
If you sat in a hospital bed for 3 months, and the only thing you wanted was to get home, do you think you’d be happy if all that was going on at home was the TV? So I guess it’s a good thing that the TV broke before the super bowl, and it took them 3 tries (and a month and a half) to get it fixed. BTW, I don’t recommend a Samsung…companies should stand by their products…Geek Squad was fairly helpful, but the whole process was just frustrating as heck and one less headache I didn’t need.
Thankfully, the weather broke here some last weekend. That allowed the kids to get outside and play. Apparently our house is going to be that house that the neighborhood kids congregate at. I’m more than good with that. Last weekend, there were kids here all day every day. Running in and out, climbing trees, riding bikes, playing tag, and buying ice cream from the ice cream truck (it was THAT nice out), prompting Rachael to say, “This was the best weekend since we’ve moved up here!”
They need to relieve stress too.
They don’t need schedules.
They don’t need parents nipping at them to get their chores done.
They need fun.
They need laughter.
They need skinned knees.
They need to just be kids.
They are helping out big time around the house, and being very thoughtful of what mom can and cannot accomplish just yet. They’re making their lunches at night before school. They’re involving mom in their homework and playing some board games with her. Rachael is probably the most help, because she can actually cook! More on that in a moment.
Cognitively, and I’ll go into more detail a little further down, she’s doing remarkably well. Conversations with her are similar to what she was before. She’s lost some things, but nothing that I’ve found yet that had any emotional weight to it. For example, she forgot what ice cream was. Some may think that’s sad, but think about being able to experience THAT again. Also, once she experiences it, she’s remembering what it was. She may struggle to remember a name, but that’s getting better all the time too. Think of when you want to describe something, and it’s on the tip of your tongue. She has those moments more than most people these days, but even that’s decreasing.
Her humor is still unparalleled. She’s still funnier than Margaret Cho!
Physically, she’s progressing, but it’s slow. She’s now able to transfer herself from her chair to the couch. Try it some time. One sided. It’s not as easy as it sounds. Actually, while you’re reading this, pick your right leg off the ground and try to stand up from a sitting position using just your left leg and arm. Then try to pivot 90 degrees to sit on something else. Then try it with shoes on and while on carpet. Then try it with a couple of drinks in you to throw off your balance (the effects of the injury and her meds).
Then put your right leg in.
And now pull your right leg out.
Put your right leg in and shake it all about.
Yeah, that’s me making it harder on her. I’m constantly cracking jokes or asking questions while she’s doing this. I’m trying to work on her multi-tasking at everything, because, in my opinion, sometimes you’ve got to run before you crawl. If our goal was to just be able to move her leg, then I’d let her concentrate. But our goal is for her to be able to walk and talk at the same time. Once she shows me that she can do something, I try to up the level of difficulty. The therapists can let her focus. The kids need more. Our family needs more. In our house and life, there isn’t all that much time to concentrate, so I’m trying to simulate real world activities. So, EVERYTHING becomes therapy. Everything. She doesn’t need comfort now. She doesn’t need pity. She needs help and guidance. She needs Burgess Meredith pushing her harder.
Next week I’m planning on tying her legs together and making her chase a chicken.
I’m KIDDING.
(Mostly)
Yep. I’m becoming a therapist.
Her right leg is getting stronger daily. It doesn’t have a whole lot of fine control yet, but just last night, from a sitting position, she was able to lift it up a few inches. When she lays down for a nap or exercise, she’s able to bring her leg up with her, avoid the chair with it, and use it some to help scootch her up in the bed. Minimal ankle movement/stability so far, but I’m the eternal optimist. When she does a big yawn and a stretch in the morning, that ankle tightens up and the toes point, which is similar to how the top half of her leg started waking up.
The best analogy to all of this that I can think of is probably if you were to leave your house for a few months, you’d probably turn everything off. When you came back, you’d have to systematically go through and turn things on again. One by one, things are turning on for her, just very S-L-O-W-L-Y.
She’s now able to activate her right shoulder. She has more power pulling it down/back but can also push it forward, bend SOME at the elbow and we’re starting to see SOME random/uncontrolled movements in her fingers.
In her face, the left side of her jaw is so tight she can’t open her mouth up more than 9 millimeters. They’re going to try botox to loosen that up this week. She’s starting to slur her words because her mind is finally moving faster than her mouth is. I keep envisioning that there’s a magic button that will make that work. I’ve been having this recurring dream. In that dream, her mouth just starts working normally again, and I keep asking her what we did to get it to work, but she’s so damn excited that it’s working, she doesn’t stop to tell me.
Kinda frustrating for it to be just out of reach…daily. But, at least it’s starting to be within sight, and that’s what keeps me going. Those little baby steps here and there. The other day, I did actually get to see her walk about 10 feet with the help of 2 people and a walker. One was making sure she didn’t tip over and the other was helping straighten her right leg when she brought it down. Not all that graceful just yet, but definitely progressing.
I do need to share one funny thing that happened this weekend.
This weekend, the weather was not so nice, but Rachael had a friend, Katie, sleep over. There were late night movies and pillow fights and the only casualty that night was one popped air mattress. The next morning, however, was a different story. The girls, both 8, did the sweetest thing. They made breakfast for everyone. It was so special. They were hopping around the kitchen doing things without much supervision and having a ball. The goal was muffins and pancakes. The result was something different. The muffins were awesome. The pancakes were made with love and chocolate chips. They even made a super special big one for Anissa. Whatever I write about them simply won’t do them justice. They were awful. The consistency of the sole of a shoe, and probably not much difference in taste. You could literally play frisbee with them.
I couldn’t keep a straight face and had to keep looking away to not laugh and crush their effort.
Anissa, however, thanks to the facial weakness kept a straight face and looked me dead in the eye and said, “These are wonderful! You girls did such a great job, why don’t you give Peter two. He’ll be happy to eat them.”
Like I said…she’s doing pretty well cognitively, and EVERYTHING is therapy.
Home 1 Mar 2010 4:46 AM (15 years ago)
First off, I wanted to say thanks to everyone who helped when the hat was passed. You’ve given us more of a fighting chance than we had the day we came home, and I can never repay everyone who donated. Please know that it was immensely appreciated in our time of need.
Well. We’re home.
It always amazes me how God puts what you need right in front of you at the right time, even though you don’t always realize it.
When we bought this house last year, we found a few small holes in one of our tubs. Anissa called around and found a guy who could come out and repair them. He was a nice, older guy. Fairly talkative and pleasant. This past week, 2 of our tubs developed holes. The one upstairs was leaking through the ceiling, so it was pretty important for us to get it fixed. I had a million things going on and didn’t really have the time to think about it other than to ask my mom to call someone and get it fixed, after learning that the warranty doesn’t cover tubs. She did a quick search and found a guy, coincidentally, the same guy, to come out. When he came to the house, he kept telling my mom, I swear I’ve been here before. He described Anissa, and after a little bit, he remembered back when we moved in. My mom explained her situation to him and that we would be coming home shortly, hence the need to get this fixed.
When I pulled up in the drive and saw a couple of repair trucks in the way, I was slightly upset because it blocked the easy path in to our house. Minor, but just another hurdle to deal with when my mind was already racing about everything the nurses and therapists had taught me. So, I drove over the lawn a little bit and pulled the car up to where we could get into the house easily. I got out, assembled her chair, and with the help of our dear sweet friend, Robin, we got her out of the car and into the house.
When we saw the repairman, he talked to us like he’d known us for 20 years.
It turns out that 20 years ago, this man’s wife was in a horrible car accident and spent 13 months in the hospital (4 in a coma), while he kept his 4 kids sane and together. When you’re struggling, there’s nothing quite like meeting someone who’s walked in your shoes at just the right time. We must’ve talked outside for an hour. We traded some war stories, and compared notes. When he described his wife’s willpower and inner strength, I thought he was talking about Anissa.
It was a very uplifting experience.
On the morning of the 19th, I did what I have been doing since this all began: I made a cup of coffee, went out on my back porch, stared off at the trees and asked the same question I’ve been asking daily, “What’s today going to bring Lord?”
Depending on what day it is, and what’s going on inside, I usually hear the wind blow, the dogs bark, occasional laughter, or maybe an argument at the breakfast table over who looked at who wrong. On Friday, after the BEST DAMN NIGHT OF SLEEP EVER, I heard laughter. To be more precise, it was howls and constant giggling. The strange thing is that it was coming from my left, out through the master bedroom window.
That was new.
The kids had snuck in to the bedroom and Anissa was tickling them, one-handed.
It was perfect.
Understand, I grew up in a broken home. My parents did their best, but, probably due to my upbringing, the one thing that I treasure above everything is my family. It was finally together again, and it was good.
Friday, Saturday and Sunday consisted of my own little personal version of “In A Fix” and problem solving. A few years back, our friend Robin was a certified massage therapist. I wanted her up here not only because she’s an awesome friend, but because I wanted her to work on Anissa. We’ve seen some positive gains from simple massages, as the neuro-pathways are waking up. So, while Robin was working on Anissa, I was running around to Home Depot, Target, Walmart, and Lowes, trying to find things to help me make the house more “Anissa friendly”. All in all, our house isn’t THAT bad for what we need. The archways and doorways are wide. It’s mostly one level, just a bedroom and the office upstairs. So, I focused on getting the bathroom modified. For less than $200, I got to go to one of my more favorite stores and problem solve, and came up with a pretty darn functional bathroom. It was the first time in forever that I’ve gotten to do something a little fun and with purpose. While I was out, Robin was working on Anissa with some pretty good response. She was able to feel certain areas of her body that she hadn’t before.
Every day is a constant series of ups and downs though. At one point over the weekend, she was looking in the mirror and asked me how I could love her when she looked so crooked and things didn’t work right. How can I be a parent when I can’t even walk. I responded with a how can you love me when I’ve gained so much weight. (Chocolate chip cookies have gotten me this far people. Go easy on the fat kid.) I also explained to her that she can be a parent in every way possible. Maybe not all of the physical stuff, but I can help with that. So throughout the weekend, we slowly learned how we’re going to make this work, and Anissa started taking steps to get things back to normal within her household.
She also got on twitter and chatted a bit with folks.
That’s a big step for her. She’s developed a slight fear of technology, because of all the things she was able to do before, she simply can’t do now. Things move too quickly for her. In an online world where a quick wit and fast typing were once her strong points, she’s having to process stuff slower, type one handed and struggles to keep up. But the key thing is that she’s trying, and loving it.
On Sunday, Robin had to leave and my Aunt Eileen flew back in from Houston. I asked Eileen to be here the first week to help me problem solve daily stuff and to be my eyes and ears at therapy. We found out that the therapy rooms at the new place aren’t big enough to accommodate family watching, but Eileen was able to have lunch with Anissa every day, and that was re-assuring to her. On Monday, we did get to accompany her throughout the day as it was orientation. Anissa had some trepidation about the new place. The week before she had to leave the people who she was comfortable with and go off into the great wide unknown. Think of it as going from junior high to high school. Terrifying for teenagers and neuro patients. Some of the patients would be familiar, but the therapists would all be new. They’d have to learn how to “get” her all over again.
On Monday, we got up at the crack of dawn, late, and headed up to Shepherd Pathways. The therapies consist largely of 50 minute sessions with many varieties of therapy. Every meeting we had, they asked Anissa what her goals were. Every therapists eyes got big when she very eloquently told them her goals. She talked slowly, and if you didn’t know she had the stroke, you’d have thought she was speaking slowly on purpose, to get her point across. Welcome to Team Anissa guys. She’s going to wow your socks off.
My birthday came and went, and we had a nice little party in the evening, together. It was simple, and perfect. When I blew out the candles (which my mom made sure there were 38 of), I made a simple little wish: Let’s see some movement on the right side, arm or leg, I don’t care, but by Friday, give me a nudge.
Every day, we got a little bit better as we worked out a routine. Every day she got a little more comfortable with the new setting.
On Thursday, she started acupuncture. Since this all began, it’s been in my mind to get that involved somehow, but I couldn’t figure out how to let a hospital allow someone else to come in and do that. So, I waited. As luck would have it, the doctor we’re seeing now, actually does acupuncture as part of treatment if the patients are willing to pay for it. It’s not covered by insurance, but I figured we’d give it a go anyway. So, Thursday, when I picked her up, I was half expecting a major leap forward. It didn’t come, but she did say that she could feel new areas of her face that she hadn’t before.
Then came Friday.
Friday was amazing.
It started out rough. She’d been having issues looking out at the road as we drove the hour to therapy. Things are moving way too fast for her, and she’s been trying to focus on things inside the vehicle. The ride home isn’t as rough because she’s either exhausted and naps, or she’s excited and talks about everything they did that day. On Friday, I thought I’d bring her itouch with us and give her something to focus on while driving. She watched a handful of the videos and pictures she’s made over the years. It made her a tad sad because she couldn’t remember how she made them. When I dropped her off, she said that she didn’t want to go and instead wanted to head on home. Eileen told her that today may be the day something monumental happens, and what would happen if she weren’t there to experience it. That got Anissa’s over the hump and she headed off to therapy, sullenly.
We had agreed to go shopping after therapy. There’s a Target real close, so we headed there as Anissa was describing the day. We trolled around Target for probably 45 minutes, grabbed a few minor things and headed out to the car. I think she liked just seeing something different. Everything was new to her. She saw the baby clothes and kept saying, “ooo…the babies”. She saw the towels and said, “Oooo…look at the bright colors.” It was as if everything was new to her. I guess sitting in a hospital room for 90 days doesn’t exactly open up the creative juices.
Afterward, we got to the car, and I helped get her in. As I was getting ready to close the car door, I did a quick visual check: legs in, seat belt on, right arm safe, right leg moved. Ok, close the door.
Waitaminit.
I opened the door back up and asked her to do that again.
She thought about it for a second, looked down at her right leg and concentrated. There it was, plain as day, her right leg moved out to the right, then it pulled back in.
Then she looked up at me and smiled.
I asked her to do that again so Eileen could see it.
Same thing.
I couldn’t stop shaking I was so psyched.
We’re doing this people.
Painstakingly slow, but we are doing this dammit.
On the ride home, Anissa slept like a rock and I let her sleep. She’d most definitely earned it.
Saturday morning, before she got out of bed, we worked on that leg a little more. She’s able to move it side to side pretty well. It’s weak, and only above the knee, but still, it’s there. When laying down, she can actually lift it up off the bed.
Over the weekend, I’d ask her to move it more here and there, in different settings. Every time, she was able to move it. It takes a lot of concentration, and more effort when there are a lot of things going on, but it’s definitely progress….and best of all I got my birthday wish.
Ahem…. 18 Feb 2010 6:35 AM (15 years ago)
I distinctly recall saying that I’d write more frequently.
Apparently I was mistaken.
Remind me to talk to someone about that.
Sorry, I’ve been a little busy.
First off, the Atlanta area had a snow day. Now, understand, I grew up in Michigan where they have equipment to handle massive snowfall before you even wake up. To my knowledge, not a single snow day happened while I was in high school. Four freaking years of big snow and zero school cancellations. Here in Atlanta, they call a snow day because it’s PROBABLY going to snow the next day.
P-R-O-B-A-B-L-Y.
The reason I moved south years ago was because I got frozen out of my car one morning. It’s actually a pretty good, albeit, long story, but suffice to say, it was the straw that broke the camel’s back. So, now, I live in the south…and it snows.
It was beautiful though. It looked like a beer commercial out the back porch. Great big huge fluffy snow blanketed everything. My kids had a whale of a day. They got to sleep in, bought sleds, and played the day away outside. My son even took a page out of Calvin and Hobbes. Let me tell you, it’s a little unnerving to pull into the drive way and have a snowman screaming at you. He ran out of snow and time before he got to do the whole scene he wanted, but it was still pretty hilarious.
I didn’t get to enjoy the snow day with the kids though. I had to go to training. Two days of training on how to help care for Anissa. It’s a big step, but nothing we can’t handle. I learned how to properly transfer her, and to help her get through the day. How to help her get dressed in the morning, and how to get her in bed in the evening, and everything in between.
Why?
Well, that right side still hasn’t kicked in enough yet. I feel it at times. She can activate her shoulder and clamp her arm down in certain situations. I’ve also seen and felt her activate her hamstring and bend her leg. Just not enough to be useful, yet. So, temporarily, she’s considered a hemiplegic. Understand, when she got to the rehab center, she could only sit up for 7 seconds before falling over. Now, she can sit up for quite a while, as the muscles around her trunk are waking up. Her spirits are excellent. The staff at the rehab center has been absolutely amazing in listening to her and treating her with love and care.
It’s pretty exciting as parts of her body are waking back up.
It’s just very very slow.
That’s ok, because, as one of my buddies in college would always say, “Pete mon, slow and steady wins da race.”
Part of the training included a lunch date. We got to go over to a restaurant and actually be a couple for a little bit. This incorporated a lot of the things I learned in training: how to transfer from her chair to the car, how to make sure she’s got everything she needs, etc. It was nice, but short…and chaperoned. The chaperone was there just in case we had issues we couldn’t handle. Luckily we didn’t.
Lastly, the training included an overnight stay for me. We got to stay in the equivalent of a little efficiency apartment for a night, sans nursing staff. That was nice. It was Valentine’s Day eve….We wound up ordering pizza and had the kids up. We had way too much fun for being in the hospital. There was one point that the kids were getting on my nerves, so I barked a little too loudly at them. Anissa, rightfully so, corrected me on being too harsh, which cracked me up. I couldn’t stop smiling. That was just another reminder on why I know we’re going to make this work. With all she’s gone through, she’s still a better parent than I am. After a little bit, my mom took the kids home and it was just Anissa and I.
We talked some.
We laughed some.
We cried some.
At one point, we were sitting on the couch, and I put my head in her lap. She rubbed my head and I closed my eyes. For about 30 seconds, it was November 16th, before any of this happened. We were a couple again, and all the pain and frustration of the past 92 some odd days was washed away.
The next morning, I woke up before her and just lay next to her until she woke up. I could almost feel her giddiness at not being in a hospital bed. She reached over and held my hand and squeezed it so hard. It was absolutely awesome.
You may have noticed a slight pattern here, called training.
Why?
Well, funny story actually…
After 92 days apart, WE’RE GOING HOME!
February 18th, today, I get the only thing I wanted: my family back.
It’s an early birthday present to me.
Things won’t be the same as it was before, I know that. But, at least we’ll be able to face the challenges together, and lean on each other after a rough day.
Speaking of challenges, the next step facility is an outpatient facility, which means that I’ll have to drive her in every day. My insurance allows for 40 days of outpatient therapy, and this program she starts on Monday is her best shot at getting back more. The only problem with it is that the co-pay on it is $100 per day. You guys have been so awesome sending in things (whomever sent in the anonymous jokes: loved them!), I truly hate to ask for the hat to be passed again, but I’m in a bind. If 400 people could send in $10 each, that would really help us out now.
Ok, that’s my best Sally Struthers impersonation.
Now for the other request.
Anyone remember the internet storm that happened when she first had the strokes?
I’d love to see an even bigger one.
Help me stand on top of the world, beat my chest, and yell in victory!
Like the watch fires in that second Lord of the Rings movie, let it go out that Anissa is going home and I’m getting my family back. This is probably about mile 5 on that marathon, but it’s a milestone people! A HUGE milestone! And we’re just hitting our stride in this.
I’ll post on Anissa’s facebook and twitter when we leave the hospital. Just please, pass the word from rooftop to rooftop.
WE’RE COMING HOME!
Do-overs 2 Feb 2010 8:20 AM (15 years ago)
Those of us who were here over Thanksgiving are planning on having a Thanksgiving meal sometime later this year. It was our Thanksgiving that never was. We joke about it occasionally. We picture Anissa sneaking things off the snack trays, and giving directions, orchestrating if you will, the perfect Thanksgiving.
That was actually one of the reasons we bought this house.
It wasn’t our first choice. It wasn’t our second choice. I think it was actually house #234049 that we looked at and decided to make our third and final choice.
We fell in love with it when we drove up. The lot is deep and nicely landscaped, maybe a bit aged, and overgrown…but I’ve been busy people! Actually I think some magic elves came and took down the Christmas lights last week, because I can’t find them and they’re not up. The yard explodes with color at various times of the year. The house is pretty too. We did need to have it modified slightly due to a broken butt incident. It’s the house we saw hosting many holiday dinners in. We pictured friends and family coming from near and far to spend some time together politely arguing over how many games the Lions would win this year, 1 or 2.
I even went so far as to request the nameplate from my grandparents’ house. The one our family sadly had to sell this past year after my grandfather built it himself 50 some odd years ago.
This was our version of a “perfect for us” home, and we could so see each other growing old in it.
Unfortunately though, we had to miss our first Thanksgiving here. We had a packed house, but it wasn’t for the right reasons. We’ll have our do-over sometime this year, and it will be awesome.
I’m wondering if we could do a do-over for the Super Bowl as well.
Why?
Because my brand new, bought this summer, HD TV broke this weekend. I called for the warranty. They sent me to the manufacturer. The manufacturer told me it would take them a couple of weeks to come out and address.
I thought about that for .2 seconds and called the Geek Squad back. The poor woman who took the call received the brunt of 70+ days of frustration. I’d like to apologize now, publicly. I get on my kids when they throw temper tantrums, and luckily it was late enough in the night that they didn’t see dad pop. I always tell my kids that nothing good ever comes from a temper tantrum, and that they need to figure out more constructive ways to get what they want.
I guess technically speaking, I did follow my own advice. I just threw a bit of anger behind it.
Because. Um. Ahem.
The Geek Squad will be out on Thursday. Of course they’ll probably need to order a part or 3, causing me to miss the big game on the big tv.
I told Anissa about it. She laughed because I’m going to miss the new Lost. “Welcome to my world” she said sarcastically. Followed with a “Oh no, actually I have a TV.” Evil thy name is Anissa!
So this past week has been filled with some pretty awesome news. I forgot to mention it last week, but Peyton’s last check up came back fine. So fine, in fact, that we snuck into the rehab center to tell mom all about it. Peyton was pretty excited that she got to see mom on her own, even if it was a brief visit. The security guard asked if she was sick in any way, and I offered him her CBC paper. I guess not many visitors can be that certain. Also, a dear sweet friend, Heather Spohr, had their baby. Anissa was pretty psyched about both.
This past weekend, we had several special friends come up and pop in on us. Monday was Anissa’s birthday, but we celebrated it on Sunday to let the kids be there with her. There were friends, some old, some new, and family around her, and we all got to just be a family for a little while. Anissa did not miss a beat. She was engaged in conversation, and quickly switched to disciplining the kids appropriately at one point. At the end of the weekend, I sat down and thought about it. It felt like I’ve almost got enough to buy that family in the Macy’s window…the one with that huge price tag. We’re almost there.
On Monday, her birthday, I finally got to give her the perfect gift. First off, I talked her therapy angels into wearing Team Anissa shirts. She got the biggest kick out of that! They hooked her up with a balloon and card. I also got her something special. I had to clear it through the medical folks and all first. What Anissa wanted more than anything was Chinese food. Something she couldn’t pronounce. So last night, we shared a little chicken lo mein together. She was ecstatic, and wanted me to leave the leftovers with her, so she could snack. I opted not to go that far, and only let her have about half of it. She was in her glory. We simply hung out for the night, and talked, just like we’d do any other birthday night after the kids went to bed. She finally asked me some details about what happened. I told her she’d had two strokes, and that was why this one was taking longer to recover from. She actually remembers a lot of detail from that day. She remembers calling me, then nothing. At some point, when we write the book, we’ll share what she remembers from the coma. It’s pretty thought provoking stuff.
Ah yes, the book. So, we’ve decided on a couple of long term goals. Goals are good. They give you something to shoot for, and surpass. First off, we’ve agreed, verbally, to speak at a conference in August. I’m still on the fence about that, because there’s travel involved, and we’ve already spent so much time apart. We’ve also agreed to write a book. Her recovery is going to take quite a while, and I figured what better way to remember the past than to write about it. The day I came up with that idea, I went in to see her and before I could tell her about it, she told me she had a dream that we wrote a book together. Anyone know a good publisher?
Ok, I’ve jabbered long enough. There’s one more bit of business I’d like to share with you all.
For her birthday, Anissa wanted to write a little note to you all, and maybe take that first little step back into the blogosphere. As part of her therapy, Anissa’s speech therapist helped her come up with the following. This is Anissa talking and Erin typing:
Things I’ve picked up from being in the hospital
- 8 year old underwear- don’t wear it. Wearing underwear that doesn’t belong to you is bad for your health (it was my daughter’s).
- The fact that my OT wants to kill me by zapping my arm. They’re onto me…and I’m onto them.
- I wear glasses with tape on them because the OT tells me they will correct my vision. But I think they make me look like Urkel.
- My “bra” (also known as an omotrain sling)- obviously an issue and meant to kill me.
- The best thing that has happened to me is realizing that I can do more than I thought I could. I felt weak and I felt tired and I found out that I am able. I have things that I can’t do, but I can still try.