Our life has become an emotional roller coaster.
The lows are so low.
The highs are oh so high.
There are bad days like Saturday and Sunday where Anissa has difficulty controlling her emotions and making sense of things. Her speech seemed to take a downward turn. Her comprehension wasn’t all that great either. We think she’s “replaying” parts of her life at times. We were watching a little TV and she was talking like we were in the movie.
Naturally it was Shrek.
Why couldn’t she have gotten me confused with Bruce Willis instead of a large green ogre?
On those bad days, there are still sprinklings of good though. I did get to sit her up in bed and work on “trunk control”. I only do this if there is at least one other adult in the room with me. I also took her down to the therapy room and helped her to stand up. We were up for a grand total of a minute or two. We stood there together for the first time in month and a half while a therapist made sure her right leg didn’t buckle on her. It was brief, but great. At one point, I got her so frustrated that she moved her right arm. I didn’t mean to, she was sitting there seething and I was thrilled that I felt the movement. It just ticked her off more and she asked me to leave.
The nursing staff has been complaining about her lately because she keeps trying to get out of the bed or chair. At night, they’ve prescribed her something to help her rest comfortably. It hasn’t helped. She’s a little too strong willed for her own good these days, which is dangerous when you’re in a hospital bed for a reason.
Then, there are amazingly good days like Monday.
I think having all three kids up there with us is a little too much for her to deal with consistently, so I tried changing things up a little. I took her little mini-me, Rachael, up.
Rachael was in need of some one-on-one time with dad, and she wanted to help too.
We got to the rehab center and Anissa was fairly active. She wanted to go for a walk. So, her sister Angela took her for a stroll through the complex. Along the way, Anissa saw an ice machine and asked if she could have some ice chips because she was so thirsty. The big concern there is that they haven’t done the test yet to figure out if she’s silently aspirating. We talked her out of that, but it did give us an idea. We wanted to test to see if she could feel the differences in temperature. We got some ice, and 2 sponges on a stick, dipped one in the ice and proceeded to test her ability to feel the temp differences. She was surprisingly accurate.
At room temperature, ice has a tendency to melt. After a little while, she asked if she could have some water on the sponge. It may sound cruel, but I didn’t want to cause her harm, so I would drain the water out and she’d get a damp sponge in her mouth. We repeated this for a while. Then, she asked for something with a little more consistency like applesauce.
Think about that for a moment. She was aware enough to understand why she couldn’t have water, then she put one and one together enough about trying something thicker.
I gave in some and loaded up the sponge with water. She swallowed it down fine, then looked at me exasperated as if to say, “See.” I asked her to cough. She did. Then take a deep breath.
She did.
She asked about getting a dvd player so she could watch some tv. I told her I left it in the back of the other car.
She told me I was fired.
A little later on, Rachael and I wheeled her outside to sit in the sunshine. She loved that. Absolutely loved it. She just silently sat there and grinned. Rachael started combing Anissa’s hair. It must’ve been very soothing because Anissa zonked right out, peacefully.
Monday was definitely a good day.
She held her head up high the whole time. Her trunk control was the best I’ve seen so far.
On Tuesday, I took Nathaniel up for what I thought would be a morning visit.
When Nathaniel and I got to the rehab center, Ali was already there and sitting in the main gathering area with Anissa. They were on the other side of the room, a sea of wheel chairs separated us during a Kwanza celebration. There were some local school kids who came out and very graciously played various instruments and read some pieces. Nathaniel and I made our way through the crowd and got to Anissa. She was thrilled to see us. One of the things that she’s in need of working on is volume control on her voice. She needed that before all this happened actually. When we got there, Anissa looked up at us and said, “you’ve got to get me out of here. They’re trying to kill me.” She nodded her head at the kids doing the musical performance. Then one little boy pulled out a violin. Anissa looked back up at me and said, “See!”
I leaned in and told her the boy was the same age as Nathaniel and she needed to show some respect.
She went back to watching, but every wrong note caused her to look back up at me and raise her eye brow. There was nothing that could be done. We were in wheelchair grid lock and weren’t going anywhere anytime soon. We were all chuckling.
When the show ended and we went back in to her room. For roughly 2 hours, it was Anissa, exactly as she should be. She was witty, sarcastic, hilarious and downright fun. We talked about current events, some movies and the kids.
We wound up leaving as the beautician was ready to take her in. She needed it.
Nathaniel and I left on cloud 9.
We got home with about 5 minutes to spare before a work meeting. As I was dialing in to a bridge call, one of the nurses called. Let’s just say they were having a difficult time getting Anissa calmed down and wanted to know about giving her medication to basically knock her out, which means she would miss a therapy session.
I told them I’d be right there and Nathaniel and I started off on another trip back up. I took the work call from the road with only minor technical difficulties.
Good times.
When we got there, Anissa was “non-compliant” with just about everything.
I walked in and just started talking to her and got her cleaned up a little.
After a while, she said, “I don’t know what happened. Last thing I remember, I was in the beauty spa and you guys left.”
She lost it then. She was distraught that she had just forgotten the past 2 hours. She balled hard.
I held her close and Nathaniel came in and we did a mini-Mayhew family hug. Anissa kept crying hard.
We both tried calming her down with minimal results.
Then, something amazing happened.
Nathaniel started singing softly.
“Don’t worry…about a thing”.
“‘Cause every little thing’s gonna be alright”
Anissa joined in, slowly at first. She’d finish a line. Then eventually she was singing right along with us.
The tears stopped and were wiped away by my little 11 year old son who impresses me more and more every day. He’s going to out grow my shoes very soon.
After that, Anissa was relaxed, talkative, more positive.
I think I’ve been a little lucky with Anissa’s responses and the timings of the visits from the kids. I may need to rethink that. She needs her to get a little more consistent with her moods for their sakes. I’m going to give her a break from the kids for a day or two and see how that goes before taking Peyton up 1-on-1.
So here’s where you, the reader, come in.
This is me asking for help.
Your prayers, love, comments and thoughts have carried us this far. You’ve picked me up when I was down.
We’ve done some brainstorming here and have come up with a laundry list of things you guys can do to help:
1. Please keep praying. It’s working miracles.
2. Record your encouraging thoughts and/or comments and email them to helpforanissa@gmail.com. Please try to keep it somewhat short, say or show your name to help her with the recognition. I’ll collect them and play them for her. I think the variety will help.
3. Send cards/photos/things to stick to the wall to our PO Box. Things with texture are best I think. Make sure to attach your name in there to again help with recognition. She’s able to read, but her vision is still a little wonky. We’ll be recycling the ones that are on her wall now so she gets some variety. The address is:
Peter Mayhew
860 Johnson Ferry Road 140-184
Atlanta, GA 30342
4. I’m not a twitter person, but my wife is. If someone could gather up a collection of what’s been said about her on twitter (the encouraging stuff), I’ll see if I can print them off with really big font and build a book. Amy Driehorst
5. A few folks have commented on getting a full spectrum light therapy lamp. Chrissi
6. Our pal, The Jennster, is organizing an online healing for Anissa. 12/30/09 at 7:00 pm EST. Pray, focus, think of my wife at that time. If you’ll recall, we did one on Thanksgiving night and a day or so later, she was out of the coma. This time we’re focusing on her right side.
7. Send over funny simple dvds. Glee, Modern Family, Scrubs, Karate Kid, Robot Chicken,
8. Need a digital picture frame – I have plenty of usb sticks from trade shows over the years and can cycle through those. – Andrea’s Sweet Life, Beth, Cindy
9. A stress ball or two. – Lauren, Nihilady
10. As odd as it may seem, if you can’t help us out, help someone. Perform a random act of kindness to a complete stranger.
11. Late addition – Her favorite Star Wars character is Yoda. If someone (maybe a clone wars fan) could gather some “Yoda-isms” I’ll print those off as well.
P.S. If you are planning on buying something and sending it in, please post what you’re getting in the comments of this post. I really don’t need 50 digital picture frames. Just one or two.
on Dec 30th, 2009 at 8:02 pm
Prayers check.
7pm tonight I’m focusing on her right side!
Also researching yodaisms to send…
And maybe some goofy movies
You all are amazing!!
on Dec 30th, 2009 at 8:03 pm
You’ve been blessed with an amazing family, and they are blessed to have you!
7pm EST is 1am GMT for me, but I’ll be praying for Anissa before I go to sleep tomorrow – as close as I can get.
Hang in there – you are doing a great job. Even if you were fired.
on Dec 30th, 2009 at 8:07 pm
You had mentioned earlier on that you would like a tape recorder – something that would pick up ambient noises – I have an old school recorder that does just that. If you’d like it, it’s yours.
on Dec 30th, 2009 at 8:09 pm
What a good kid you have! Love him!
I love that Anissa’s wit is showing through.
Keep your chin up.
Sending love, hope, and prayers.
on Dec 30th, 2009 at 8:10 pm
Praying!
on Dec 30th, 2009 at 8:16 pm
I am praying and praying and praying.
and tweeting.
may the force be with you and yours this night.
on Dec 30th, 2009 at 8:32 pm
Funny DVDs and prayers on the way.
Squeezes to your amazing family.
on Dec 30th, 2009 at 8:37 pm
I’ve got my Josh working on something yoda-related. He is his favorite too.
LOVE to you, Pete.
Anissa amazes me every day. MAGIC.
on Dec 30th, 2009 at 8:38 pm
Thank you for sharing your trials and tribulations at this difficult time for your family i constantly check for updates and was moved to comment today. All your kids are amazing(I am always in happy tears reading) and i continue to keep you and your family in my prayers!!
on Dec 30th, 2009 at 8:40 pm
sending my healing thoughts to anissa and your family… always.
on Dec 30th, 2009 at 8:41 pm
we are praying for your family!
on Dec 30th, 2009 at 8:45 pm
Amazing progress. xx continued prayers. I’ll definitely do a RAOK (#10). Let me know if you’d like me to put it up as in recognition to Anissa. Otherwise, it’s just going out as anonymous 🙂
on Dec 30th, 2009 at 9:00 pm
Praying.
on Dec 30th, 2009 at 9:21 pm
I’ve never met Anissa, but have heard a lot about her and have followed this every step of the way. I send prayers your way every day and have added you to the prayer lists of both my family and friends. My husband, daughter and I all said a special prayer for you two and the kids as well tonight. God Bless you all and I’ll continue the prayers!
on Dec 30th, 2009 at 9:56 pm
I met Anissa once, and I made an ass of myself. I stuck my foot so far into my mouth that you could see it coming out the other end. Anissa was gracious and explained my faux pas, then went on to not speak to me for a month, for hurting her friend. Later, we talked and I got to see her amazingly powerful love for her friends, her instinct to protect them, her ability to forgive even total assholes like myself. She is an amazing woman.
On second thought, though, maybe we shouldn’t remind her of that. Maybe she forgot and I might stand a chance of a friendship with her, down the road. I can’t imagine a better friend than Anissa.
I have complete faith that she will come through this will all her faculties intact. It’s one of the few things that I know, without a doubt. This is a long journey you’re on, and I know that it sucks. But, a woman as powerful in love as Annisa will kick this thing’s ass. With all the support and prayers and GLEE eps she has coming, it’s a forgeone conclusion.
Bless you, Peter. You are a hero of the highest order. There is probably a constellation of you, somewhere in the night sky, the kind of hero you are.
PS. Sorry you got fired. 😉
on Dec 30th, 2009 at 10:14 pm
The strength of your family amazes me with every post.
Count me in for sending some scrubs DVDs plus a cards with photos from BlogHer.
Much love,
Lolita
on Dec 30th, 2009 at 10:18 pm
So happy to see the improvements that Anissa is making, i’ve been praying for her. I had planned to contact her and ask her for fundraising ideas for my 1 year old grandson that is dealing with a malignant braintumor and will go thru radiation starting next month. Then this happened. Reading thru her blog a few months ago gave me so much encouragement , she’s a fighter and such a wonderful mother. I’ll pray that she continues to improve and that you and the kids keep up with your strength.
on Dec 30th, 2009 at 10:20 pm
Prayers, prayers, prayers for Anissa, you and your children….
Sounds like you have many Yoda-isms coming your way (since all your other material requests have been met!) Here’s a few in the meanwhile:
Do it or do not… there is no try.
Who’s your Jedi master? WHO’S your Jedi Master?
http://thinkexist.com/quotes/yoda/
on Dec 30th, 2009 at 10:24 pm
We’re keeping on praying and we’ll send something to the PO Box, but the mail from Canada will take a few extra days.
You all are amazing!!!!
on Dec 30th, 2009 at 10:39 pm
Hi Peter… praying for you all. 🙂 Here is a full page of Yoda quotes if you still need them. These are heard throughout my house *every* day…
http://starwars.wikia.com/wiki/Quote:Yoda
on Dec 30th, 2009 at 11:22 pm
I’ll call in and have her name added to the prayer roll list with my church.
So glad to keep seeing these positive updates – your family is an inspiration. I don’t know you personally, but I feel connected to your wife as a fellow mother. Thank you for sharing all of this.
on Dec 30th, 2009 at 11:38 pm
ON IT!
The note your mother sent thanking us for the gifts we sent for the kiddos was so nice to receive. Touched my heart. Please tell her she’s making a difference to us out here.
“No. Try not. Do… or do not. There is no try.” ~ Yoda
on Dec 30th, 2009 at 11:41 pm
Continued Prayers from Kyooty/Mary
on Dec 30th, 2009 at 11:50 pm
I pray for her and your family every night and I promise not to stop.
on Dec 30th, 2009 at 11:50 pm
My heart aches each time I read about the lows. Hoping that those lows become fewer and fewer as Anissa continues to get stronger. Try to take care of yourself as well, as this is quite a heavy load you are carrying. I know that moral support isn’t as helpful as actually being there to help, but moral support you have in spades from me even though I don’t know your family IRL. I missed the scheduled healing time, but that won’t stop me from focusing on her right side now. Sending positive thoughts and virtual hugs to you all.
on Dec 31st, 2009 at 12:05 am
Peter, I started a Group Playlist for Anissa with Inspiring “We Love You/Get Well” music. I’ve tweeted about it and invited folks to add songs for her, and will through the weekend…then, I wanted to send it on to you at the beginning of the week – say, Monday.
I’ll put all the songs in mp3 format on a flash drive for you to transfer to an iPod or a laptop – will that be okay?
So far there are 66 songs. I added Three Little Birds for Nathaniel. 🙂 You can see the list here: http://www.playlist.com/playlist/18467767819
Still praying hard!
on Dec 31st, 2009 at 12:09 am
My littlest and I watched the Nogin Bob Marley clip not 30 minutes before I read your blog. Your 11 yr old boy is one awesome kid!!! (As are all of you Mayhews!) I have a great idea for a little something that’s soothing, tactile, and meditative – and some say healing, too. Sending a tactile surprise ASAP!!!
Big huge hugs and the best positive vibes to all of you!
Heidi
on Dec 31st, 2009 at 12:17 am
oh that poor boy with the violin. Oh Anissa, this is the part of you that I love the most. I’m so proud of you. There are ups and downs in EVERYTHING in life, even the really good stuff isn’t always so good. Don’t get discouraged. I love you kid
on Dec 31st, 2009 at 12:47 am
Peter, we are sending prayers your way each and every day. Thanks for the update.
on Dec 31st, 2009 at 1:18 am
i’ll work on something to send you peter. you are an incredible man and your family rocks. anissa will get through this! sending you all love, hugs and thoughts of encouragement and health from arizona. -x-
on Dec 31st, 2009 at 2:00 am
Peter,
I’ve been a slient follower of Anissa’s on Twitter for awhile, and I’ve been reading since this happened.
You mentioned Yoda-isms. My husband is a Star Wars nut. We were talking about Anissa and this request tonight, and he reminded me of this line: “Do, or do not. There is no try.” –Yoda teaching Luke to use The Force.
I got to searching for the line and came across this YouTube video, that go figure, is that scene. You can check it out here: http://www.youtube.com/watch?v=q3hn6fFTxeo&hl=en&fs=1&
Anissa, from what I know of her on Twitter, what I’ve read, and what I’ve seen from others, is a doer. She just needs help using The Force. 🙂
on Dec 31st, 2009 at 2:34 am
Hi Peter,
You will have the package by the latest on Monday due to Holiday shipping!
I included a card with our email in it but my handwriting is atrocious. How do I send you my husband’s email address without posting it?
Enjoy your New Year with Anissa and the kiddos!
Beth
on Dec 31st, 2009 at 2:48 am
I keep thinking how frustrating this must be fore EVERYONE involved. How exhausting and scary for you, how terrifying for her and absolutely bewildering for the kids. And I read this blog and I am consistently blown away that you are taking the time to share with everyone who knows Anissa via her blog or twitter or whatever. You are an amazing family. My thoughts are with you all.
on Dec 31st, 2009 at 3:02 am
hugs and prayers for all of you. and blessings on husbands who hang in…
will be sending something shortly…
on Dec 31st, 2009 at 3:28 am
Oh my goodness, she is just amazing. That you are having these conversations with her just blows me away. Amazing, you Mayhews are. 🙂
on Dec 31st, 2009 at 3:42 am
Do you think Anissa would like a DVD of The Hangover? It’s the funniest movie I’ve ever seen. I don’t watch TV or own any DVDs, but I was going to buy that one. But, now, I’d rather buy it for Anissa.
My mother had a stroke in August, and she will be leaving rehab a week from Saturday. I don’t think it was quite as massive as Anissa’s and yet Anissa’s condition doesn’t seem very far off from what I’ve been seeing in my mother. I will continue to pray for Anissa at odd times of the day and night, but I firmly believe that laughter heals.
So, if you would like the DVD, please let me know.
My most heartfelt wishes for your family to have a blessed 2010.
on Dec 31st, 2009 at 8:36 am
Happy New Year to your family – I truly hope it is a magical one for you.
on Dec 31st, 2009 at 12:58 pm
I might not ever meet you untill we all get to heaven! BUT – your families faith and strength has been such an amazing encouragment, I will continue praying Gods provision and will in your lives – may this time of chaos, pain and tribulation bring glory to His name. Hoping the 2010 brings you all unthinkable joy!
on Dec 31st, 2009 at 1:12 pm
Such a long road ahead, but she is doing so well. Hugs, good vibes, healing thoughts sent.
on Dec 31st, 2009 at 3:55 pm
I’m another person who found your family through the Spohrs website.
Listen, about this evening confusion and ‘non-compliance’ thing. It might be her night meds. Some of those have some pretty alarming side effects, that just might be a problem for someone who’s supposed to stay in bed.
When my mother was living, her doc had her on Ambien at night. Within 20 minutes of taking that damned pill, she’d start hallucinating, out of bed, walking around, thinking she still smoked and trying to light a cig WITH her oxygen running, draping her oxygen tubing over the gas stove with the pilots lit, talking to people – some of them were dead, and others were in other states – none of them were in the room with her, etc.
I was having fits trying to keep her in bed. She, however, was having a ball, laughing at jokes only she could hear. Once, she, apparently, had an argument with her sister (who wasn’t there), and took a swing at her.
Finally, I started taking night meds away, one at a time, and then re-introducing them. It was the Ambien. Took that away, and everything returned to normal. Slept through the night.
Sorry for the long story. In any case, check out her night meds, and see if maybe some of the problem stems from them.
Take good care, and I pray God blesses you all with the courage and strength needed. He’s already blessed you with abundant and everlasting love.
Maggie
on Dec 31st, 2009 at 8:32 pm
I’ve never commented but wanted to tell you that Anissa has been in my thoughts every day since this happened, I tell everyone I know to keep her in their thoughts as well..because your wife ROCKS!
And the Yodaisms? I am so on it! One of my best friends is a hardcore Star Wars Nerd, since both of us are without cool New Years Eve plans, we are instead trolling the internet and our memories for Yoda quotes.
on Jan 1st, 2010 at 1:51 am
Hi, Peter,
I came across your blog through my dearest friend, Robyn Cobb – I am moved to tears by a multitude of emotions, and so grateful for your sharing so openly and candidly about what Anissa and your family is going through. I am honored to pray daily now for Anissa, you and your family.
All the best to you and your family every day!
Love, Beth
on Jan 1st, 2010 at 2:02 am
I will be sending out some cards with different textures here shortly for you. I continue to keep your family in my prayers and your family is on our church prayer list as well. Here’s hopin’ to a bigger and better 2010!
Again, thanks for the updates!
~Jana
Germantown, OH
p.s. If it is ok with you I was going to see if I could send you what we call a prayer shawl down, it is a blanket that is made and blessed from our church…healing all wrapped into one type thing. If you could let me know her favorite color I will have it made! Thanks!
on Jan 1st, 2010 at 3:34 am
This is stunning. I know it feels like it’s going slow for you, and you miss your wife and the kids miss their mom, but it’s still amazing.
I have never ever heard of anyone progressing so quickly in their recovery from a stroke. Anissa’s strength still comes through. How frustrating it must be to her to lose time, forget things, or not being able to move as she’d like!
And you guys, you are absolutely AMAZING. You and the kids are so wonderful, so inspiring. The song bit made me cry, it was such perfect timing, such a sweet thing to do.
on Jan 1st, 2010 at 11:49 am
Yes, it’s ok and very much appreciated. Go with a purple.
on Jan 1st, 2010 at 12:22 pm
I can help with #10-random act of kindness.
I’ve had back problems for years and had two surgeries this past October. One of the surgeries was to repair a CSF (brain fluid) leak caused by a bone spur after surgery. Fast foward to this Tuesday the 29th (hubby’s b-day). I was having major back pain so bad that I went to the ER at Bayfront. An MRI was ordered and I was told that I had another CSF leak and was admitted. I didn’t get to my room until 10:00 pm or so.
That night I met the most amazing 85 year old woman, Jane that was my roomate. She was in the hospital because of a fall. We were both unable to sleep so we stayed up all night talking about everything. She even talked me into called her daughter at 6am to come see her.
On Wednesday morning my neurosurgeon came in and said that I didn’t have a leak. My pain was most likely caused by deep tissue/muscle inflamation. I was able to come home yesterday. The time I spent with Jane was awesome! I met one of her daughters and grandaughters. When Jane’s family was gone I was their eyes and ears. I helped her with her food, called her nurse when she needed. I made sure that she was taken care of when her family wasn’t their. I even had their cell number so I could call if needed and they had mine.
When I was leaving yesterday and saying my good-bye’s to Jane and her family, her daughter broke down a little while thanking me. She hadn’t slept in days because she was so worried about Jane. The night before was the first night she actually slept, she said it was because I was with her mother.
I will never forget Jane and her family, they are simply awesome poeple. I think Jane helped me more than I helped her. We got each other through a very tough time. So here are two random acts of kindness!
I’m praying for you guys!! I’ll be sending some pictures for the wall of fame. My 5 year old daughter made her a picture too.
on Jan 1st, 2010 at 12:25 pm
Hi Peter:
Happy to help. I’ll record some brief greetings, including some jokes of the day, to share with you and Anissa.
And I’ll take this as an invitation to break out the box of scrapbooking supplies to add some embellishments and texture to cards, memento pages, and some decorations for her room.
Here’s to lots of hope, love, and big wishes for Anissa, you and your family in 2010.
on Jan 1st, 2010 at 4:45 pm
Hey everyone..
I have a video montage I put together, with the help of many friends, photographers, supporters… called “Give Anissa a Hand” –
I’d like to get the link right to Peter’s hands, so he can show the family himself. (rather than link thru my blog)
Does anyone know if helpforanissa@gmail.com is the best email to use to send it to him??????????????
Thanks!
(if someone could email me the answer, I’d most appreciate it!)
david_and_tracie at ya hooo
on Jan 1st, 2010 at 7:29 pm
Three Little Birds was played twice at our wedding reception. A good one to remember.
Keeping Anissa in my thoughts and prayers. When she’s in a good place, tell her Manic Mommy said Eff Me Loud. Hopefully she’ll laugh. xo
on Jan 1st, 2010 at 10:51 pm
I’ve been thinking of Anissa today — I haven’t checked in for a few days. I’m hoping that this year brings your family and your wife much health and happiness.
The lows do sound low. But the highs sound amazing. Many hugs and best wishes to you guys.