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 Jan 2nd, 2010 at 12:40 am
Your family’s entire story is so amazing and inspiring. To me, the most inspiring thing of all is not the strength to overcome all the things you’ve been handed, but your dedication to your wife. As a newly single mom of 3, I’d pretty much lost faith in love (husband/wife love I mean). Seeing how much thought you put into your time with Anissa, and how much you love her, gives me hope. Thank you.
on Jan 2nd, 2010 at 1:43 am
I’ve prayed and seeing the results of the prayers and help is wonderful and amazing! Your son’s gentle spirit made me cry. It’s so wonderful that she has so much support in her time of need. Thanks for sharing the testimonies of God’s great mercies on your family!
on Jan 2nd, 2010 at 2:21 am
I have a pretty good list of Yoda quotes. Where can I send them, Peter?
on Jan 2nd, 2010 at 3:28 am
much love and prayers to you all.
on Jan 2nd, 2010 at 11:07 am
First Yoda-ism that came to mind is a favorite in our family:
“Do or do not, there is no try.”
🙂
on Jan 2nd, 2010 at 5:41 pm
Dear Mayhew family. I hope Anissa will one day be able to read the words on the blog with the same eyes and sense of humour she used to see the world through. She seems like a tough one. My best of hopes for 2010. Dines.
on Jan 2nd, 2010 at 11:46 pm
The helpforanissa@gmail.com address works just fine for that.
on Jan 3rd, 2010 at 1:11 am
I have been away from my fav blogs for the holidays so please forgive me if this idea was already mentioned. but have you seen 50 First Dates with Drew Barrymore? Everyday she woke up not knowing ANYTHING from her past. They began video taping every day so when she’d wake up she’d immediately view the tape and be able to ‘remember’ everything. I wondered if that was something you thought to do so she could remember each day she spends with her family. The more she watches the videos, perhaps those memories will begin to stick. Praying still!!
on Jan 3rd, 2010 at 12:29 pm
Hey Peter,
Has anyone offered one of these? http://www.estarling.com
Its a wi-fi photo frame that will read a photo feed from google and pull in tweets that are live. Seems like it might help with some of the live updates and keeping the photo frame fresh.
Let me know if that would help out.
-Aman
on Jan 3rd, 2010 at 8:49 pm
I had been away since before Christmas.
I sat in my basement bawling my eyes out tonight catching up on you and your sweet kiddos and how well they are dealing with ALL of this.
Please know your family is in my prayers!
on Jan 4th, 2010 at 10:06 am
Continued prayers for Anissa and your family. What wonderful things you are doing. While I do not know you or Anissa, I will try to come up with something. Till then – you will all remain in my prayers. God’s Blessings to all of you.
on Jan 4th, 2010 at 12:23 pm
Every time I read an update I’m torn to pieces. I can only imagine the rollercoaster and be inspired by your bravery while riding it.
on Jan 5th, 2010 at 2:19 am
So, I don’t ‘know’ you or your family at all. I only stumbled across the site after Anissa’s stroke, after seeing a link on…Twitter, I think? Our family has had its own share of struggles (son with HLHS and husband with terrible thyroid cancer) and I’ve just been riveted ever since, cheering for Anissa on my side of the screen, crying like the mom that I am over your family reunions (mini and otherwise). I admire the strength and the humor with which you’re facing this new ordeal in your lives. It used to bug me when people would tell me things like that because I didn’t know how I did it and didn’t feel special, but trust me when I say that I’ve learned not everyone can pull it off and you’re doing far, far, far better than most.
Saw this little silly on dump.com today and it made me think of Anissa so I’m coming out of lurk-mode to share it. Maybe someone more talented than I could recreate him for to have in her room?
http://www.dump.com/2009/10/12/origami-am-i/
on Jan 5th, 2010 at 8:50 am
[…] Anissa Mayhew is a mother, wife, a blogger and according to her Twitter page bio, she is “Like snorting pop rocks, but without the headache.” Anissa also is currently in a rehabilitation facility, recovering from the two strokes she suffered in November, 2009. According to her husband, she was not given a great prognosis, especially after the second stroke but as of December 30, 2009, she is coming back to the world, her world, and in her own Anissa way: 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!” (more here) […]
on Jan 5th, 2010 at 1:21 pm
Thinking of you all lots! Sending love and prayers!
on Jan 5th, 2010 at 1:44 pm
Just stopping by to let y’all know I’m thinking about you and hoping there are more highs than lows on the roller coaster in recent days.
on Jan 5th, 2010 at 5:16 pm
I was away the holidays. I am sorry that I was unable to sign and check in. It looks like things are looking up. It is going to be a good year for the Mayhew’s. Keep fighting Anissa, and Happy New Year to all the entire Mayhew clan.
on Jan 5th, 2010 at 8:05 pm
We’re all pulling for you and your family — go get ’em Anissa!
on Jan 5th, 2010 at 9:15 pm
I’m somewhat new to this blog – but just wanted to say I’m saying prayers for your family.
on Jan 5th, 2010 at 11:55 pm
i dont think i have ever spoken up. but i was led to your site via jenny the bloggess and have been following it ever since. as frustrating as my children can be at the end of the day when im sitting here i think of anissa making her recovery and fighting to get back to her children. you are doing such a wonderful job on the blog. i hope it serves as not only a healing instrument for you and your family, but a record of her strength for anissa when she is well and back to herself.
i pray for your family. for the day when the mayhew hug is an everyday occurrence again.
on Jan 6th, 2010 at 12:59 am
Thanks so much for your continued updates. I’m always thinking of you and your wonderful family. While I haven’t met Anissa, I look forward to giving her a hug sometime soon! Please keep posting what would be helpful for Anissa to have since I’d love to contribute!
on Jan 6th, 2010 at 10:48 am
just letting you know i’m thinking about you, anissa!
on Jan 6th, 2010 at 2:40 pm
[…] Anissa Mayhew is a mother, wife, a blogger and according to her Twitter page bio, she is “Like snorting pop rocks, but without the headache.” Anissa also is currently in a rehabilitation facility, recovering from the two strokes she suffered in November, 2009. According to her husband, she was not given a great prognosis, especially after the second stroke but as of December 30, 2009, she is coming back to the world, her world, and in her own Anissa way: 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!” (more here) […]
on Jan 8th, 2010 at 4:54 pm
Do you still need Scrubs DVDs? There are 8 seasons and some have already said they are sending them in. I will send a couple, just don’t want to duplicate.
Any other funny DVD suggestions?
on Jan 9th, 2010 at 8:20 pm
I just finished reading this book: http://www.mystrokeofinsight.com/ and think it might help you understand what Anissa is going through and what might help you help her.
I’m keeping you all in my thoughts, and hope for a quick recovery.
on Jan 12th, 2010 at 9:27 am
Hi Peter,
Thank heaven for technology! We have the results all pulled together. I can very easily format them any way you like. I know you mentioned wanting to create a book with very large font. If you’ll tell me how big you need it to be, I can format the report (which will be an Excel spreadsheet) so all you have to do is hit print.
Thanks,
Amy
on Jan 15th, 2010 at 5:31 pm
[…] a minute and read today’s post and if you can help out, please do […]
on Jan 22nd, 2010 at 3:53 pm
[…] Hope4Peyton […]
on Aug 28th, 2010 at 9:15 pm
Blessings to you!