Six years ago today, my little Peyton made her grand entrance, and the world was never the same.
It was brighter.
Today we celebrated Peyton’s birthday with breakfast, presents, Rockettes, dinner and cake, prompting her to say this was the best birthday yet. Thanks to everyone who sent cards/presents and a big thanks for the tickets to the Rockettes. The timing was impeccable on that one. It gave my kids a well deserved distraction that they’ve been needing.
Ya know, if you watch the news, you get the feeling that this world is a horrible place.
Have a catastrophe or 3 happen to you, and you see the absolute beauty in this world. There are GREAT people in it.
Please understand, I simply don’t have the time for thank you cards….but each gift, thought, prayer, comment, etc. has been received and appreciated with much love. There have been some amazing, inspiring things happening, and a lot of times I’m at a loss for what to say, other than thank you and I can only pay it forward.
To that end, Anissa absolutely loves the Twilight series. She wrote about it a few months back in here somewhere. Some friends, new and old, came up with a “twilight inspired idea.” They’ve come up with shirts for Team Anissa and all proceeds are coming to us. Check it out here.
So, Friday morning arrived with MUCH anticipation.
Thanks to friends and family, since all this began, Anissa has only been alone in the ICU for one night. It was Wednesday night. She had essentially been stable, and was consistently resting through the nights. I just wanted to make sure someone she knew was there as she was waking up, so she would have some comfort.
They extubated her Thursday night, and my aunt thankfully stayed with her. Just as an extra precaution to make sure she could keep her airway clear.
When I got up to the hospital Friday morning, Anissa had a mask over her mouth to force oxygen at her. She was looking fairly aware. She was also acting fairly ticked off. She was pushing us away when we’d get close.
She reached up and pulled the mask off violently.
They brought in some tubes that went under her nose instead. She was ok with that.
I started talking to her. Trying to figure out some form of communication. She just stared at me, angrily.
I’ve been known to ask an inappropriate question or two in tense situations. It’s just our way of dealing with stress. It lets the other know things are going to be alright, and has been known to diffuse situations for us in the past. So, I rolled the dice a little. I told her she probably couldn’t talk, but could you try to sing a few bars. She actually sarcastically snorted at that.
I asked if she was mad. Big nod yes.
I asked her if she was mad at me. Big nod yes.
I asked her if she was mad at me because she was in the hospital bed. Big nod yes.
I asked her if she wanted to see someone else here. Nothing.
I held her hand and said squeeze if you hear a name of someone you want to see. I rattled off a few names. Nothing. I started naming off the kids. Big squeeze.
I got the feeling she was doing more than just hearing me. She was actually comprehending things. So, I started telling her about things. I said the kids were safe in school, that I paid the bills, that Peyton had broken her wrist, that Rachael was named student of the month. I told her I had talks with Nathaniel’s teachers about his progress report.
Basically, I told her I had everything under control.
Her expression changed from anger to surprise.
The nurses came in to do a few things so I left the room for a little bit. Angry isn’t really a strong enough word for what I got from Anissa. I made a few phone calls to family and friends and got what I think was some pretty good advice. Maybe she’s confused about what’s going on. Tell her what happened. She’s trapped in there, disoriented, in and out, confused and can’t communicate.
When I got back to the room, she was still pretty ticked.
I got in real close to her and gave her a kiss. She turned her head away. I told her she was in the ICU of the hospital and that she had another stroke. She turned her head back to face me.
I told her some of the highlights of the past 3 weeks. Not too much. I didn’t want to overwhelm her.
She softened some and held my hand.
We were interrupted because the nurses came in to transfer us.
Yes, I said transfer.
We’ve moved out of the ICU people!
We’re in a normal room. Of course there’s a bit of fear of leaving the comfort zone of the ICU nurses, but this is a HUGE step.
When she got down to the room, we resumed our conversation. I played some sounds of breakfast that morning with the kids. I told her they were doing fine.
I played some music from her favorite show, Glee.
A little later, I asked if she wanted to see a video. She nodded yes. So I played one. I played the “Faces of Childhood Cancer” for her. She had watched it over and over again when she made it the first time. As it was playing, I was talking to her. Do you remember making this? Nod. You helped all of those beautiful kids when they needed it. You helped give them hope. You didn’t let them quit. They’ve all been praying for you and walking with you. They’re not going to let you quit. It’s ok to be mad, sad, laugh, cry, you name it. Does this suck now? You bet. But, I’m here with you. You know that. I’m not going anywhere. The kids are praying for you and they miss you. This is just one more thing for us to overcome. The damage that’s been done can be fixed. It’s going to be hard. We’ve got a lot of work to do, but we’ve also got a lot of help.
When that video ended, I asked if she wanted to see a different one. Big nod yes. I showed her the “A Mother’s Love” video. As it played, I told her all of those moms are with you. You’ve helped them when they were down. They’ve been helping you. They’re going to help you now. It’s going to take a lot of work, but we’re in this together. We can do this. We’ve got a lot of help. It’s just one more thing. Then I asked if she wanted to try to work.
Big nod yes.
Ok, try to chew. She moved her mouth. Try to cough. Cough. Want to try to sit up? She moved her arm over to the rail to try to push off. She didn’t get all that far. Still EXTREMELY weak. Try to talk. Mouth opened.
She’s in there.
I’ve just got to figure out how to get her out.
This morning, she was not as aware as she was yesterday. I think that’s how this is going to go. There will be ups and downs, and she needs lots and lots of rest. She’s in and out a lot. I’m pretty sure she’s getting most of the conversations when she’s in.
The thing about the brain is that they simply don’t understand a whole lot about it. Some folks have left some book ideas on here in the comments section. I’ve got some reading to do.
I don’t know that I want to be disheartened by “experts” who tell me things that can’t be done at this point. I’m really more interested in possibilities at this point. I do, however, want to know the best methods and durations to push her on.
All of you thick-skinned, loud voiced people who I’ve been holding in reserve…your time to help may be coming a little sooner than I anticipated. There will be times that she needs to be pushed beyond her limits, we’re not there yet, but I think we are getting there.
On Monday, we’ll be re-evaluated by a couple of different rehab centers.
I’m letting her get some rest this weekend and not pushing her too hard. Her sister covered today so I could do Peyton’s birthday. She got some pretty good communication from her too.
I’m just hoping the evaluators see it.
on Dec 7th, 2009 at 11:56 am
Peter…
I checked in last night but didn’t really expect a new post so soon! What a wonderful surprise. I am so happy she is angry and so glad she is showing so much life. It was a great idea to think she is confused and looking for some answers. For all we know, she just realized where she is and doesn’t know why.
You are doing so wonderfully! Happy belated birthday to Peyton!
on Dec 7th, 2009 at 12:39 pm
The experts will always commit on the side of “don’t get your hopes up”. It’s standard CYA practice, I guess.
But hope is a strong and powerful force and what you’ve said sounds like wonderful progress. So forget the experts and go back to think on the possibilities. What you’ve done already is far more than other people might even think of (great job, BTW!). Prayers will be continuing for Anissa and your whole family!
on Dec 7th, 2009 at 12:41 pm
This is FANTASTIC news!!! Continuing to pray for all of you!!!!
on Dec 7th, 2009 at 12:46 pm
glad to hear about this progress!
on Dec 7th, 2009 at 12:56 pm
I’m no expert, but it really sounds to me like you are doing everything right. Possibly because of your experience with Peyton, you have great instincts to deal with this. Your strength is inspiring. Keep up the good work and the great updates. Love to Anissa, and HAPPY BIRTHDAY PEYTON!
on Dec 7th, 2009 at 12:59 pm
God bless you all.
Still praying…..
on Dec 7th, 2009 at 1:03 pm
I’ll be hoping good things for you guys today. YAY for getting out of the ICU. That is a huge step.
Happy belated birthday to Peyton too.
on Dec 7th, 2009 at 1:38 pm
my best friend’s mother suffered a massive stroke roughly 4 years ago and she is a mother of six. it was very serious, but she pulled through, and now she’s driving, taking care of her kids, doing new things, etc., mentally, aside from some forgetfulness, she’s all there.
i’m sure it’ll be the same for Anissa 🙂 hang in there!! you’ll make it through!! xxxx
on Dec 7th, 2009 at 3:13 pm
Thrilled with the progress. Still praying and pulling for you guys.
on Dec 7th, 2009 at 3:15 pm
Happy Birthday Peyton! Next year your mom will be there to remind you to make a wish before you blow your candles out.
Very encouraging news with Anissa – that awareness and emotion and comprehension is SO IMPORTANT. That is the key to her recovery. She will eventually speak if she has something to say and obviously she has something to say. Because she is mad!
My Stroke of Insight will help you a lot. And Jill never says there are limits. In fact, she says the opposite. She learned to drive again before she learned to read again. I think that says a lot.
What you are doing is some of the hardest stuff you will ever go through. Make sure you go for a walk with someone who knows you really really well and talk. Talk about anything. Talk about what is happening in your heart. Talk about what scares you and what gives you joy. Because you will not be the focus of anyone’s care for a long time and the work you are doing is exhausting.
I pray the intention that Anissa will start speaking words to you, with the love that she has in her heart for you and her children. And she will speak until the sentences form and she will walk to you and put her arms around you and laugh. And write. And read and make breakfast in the mornings when she comes home.
Amen.
on Dec 7th, 2009 at 5:36 pm
Such a strong woman, Anissa. And you and your children.
on Dec 7th, 2009 at 5:49 pm
Been silently waiting from the Uk for news. everyone else has said anything I could have said and more but better. I echo all of the above.
on Dec 7th, 2009 at 6:04 pm
Once upon a time I hit a tractor with my car. While my injuries were fairly localized, they were extensive and severe. The best ortho group in this part of our state told my husband that I’d not walk properly again.
When my husband relayed this information to me, I said, “BullSHIT.” And now (unless I’m wearing heels, they stutter my walk a little) nobody would ever know that I had this debilitating accident/injury.
I’m glad you’re not yet willing to acquiesce to the ‘experts’. They answer to someone else entirely, too. God has plenty of good in reserve for you guys, I just know it.
on Dec 7th, 2009 at 8:28 pm
Hi —
You don’t know me but I’m joining the others in praying for you and your family. I think the one thing doctors and experts know about the brain is that they don’t know why it recovers or exactly how it does so don’t listen to anyone who limits you. It’s great that Anissa is responsive and angry — she is a fighter and it sounds like she will fight like mad to get back toyou and the kids.
God bless you all.
on Dec 7th, 2009 at 9:23 pm
I am overwhelmed by Anissa, you and how incredible everyone around you has been. I haven’t met Anissa yet, but I’ve been thinking about all of you non-stop.
I haven’t wanted to seem like an interloper, but I really had to tell you that I am inspired beyond words and whatever my version of praying is, I am totally doing that for Anissa. I can’t wait to meet her.
on Dec 7th, 2009 at 10:13 pm
Happy Birthday to Peyton and thanks to you for providing constant inspiration to everyone near and far.
on Dec 7th, 2009 at 10:36 pm
AWESOME!!!! Tears of joy! Still prayin’ and believing!
~Jana
Germantown, OH
on Dec 8th, 2009 at 12:38 am
I just subscribed so I could follow you and Anissa win this battle. I learned about you from Francesca at Mayhem and Moxie when they asked if I’d be willing to donate to an auction to help you (I have an online boy store and said yes).
I loved the progress you noted in this blog and wanted to give big kudos to you for 1. maintaining the blog and 2. keeping your children’s lives as “normal” as they can be under the circumstances and 3. being there so thoroughly for your wonderful wife.
You said that she is stronger than you. You’re battling valiently as is she. Keep up the good work. Your love for your family is very heartwarming. I need to know that you guys come through this ok.
A big Happy Birthday to Peyton.
on Dec 8th, 2009 at 2:48 am
I have been following this now since The Bloggess posted about it.
I have been thinking about you all and have hope that all will be grand.
my heart goes out to you.
on Dec 8th, 2009 at 3:18 am
My husband had a brainstem stroke 8 1/2 years ago at the age of 44. He was in the hospital for 3 months and 3 days. In a coma for 2 weeks, had 2 surgeries to release the pressure that kept building in his brain and was in 2 rehab hospitals. He is now doing great. In a wheelchair with no balance but doing great. Great attitude (most of the time). Never gives up the hope that he will some day walk.
I understand what you are going through. Been there. You are a great inspiration to a lot of people. Please don’t believe what the “experts” are telling you. It is a bunch of junk. I was told my husband would never talk again. He made a sound once, so I figured that if he made a sound, I could pester him enough to yell at me. I kept calling his name just be obnoxious long enough that he yelled, “get away from me”. That was one of the happiest days of my life.
He has had many struggles but what gets us through the hard times, and there are many, is humor. Lots and lots of humor. We make fun of each other all the time. He is my memory because mine is bad and I am his legs. It takes lots of team work to make our life the way it is but just do what you have to do. It is well worth the effort.
I was told he would never eat, sit up, talk, see, or do anything else. Wrong. His motto is “attitude plus persistence equals success.” Success is whatever you want think success is. Not what anyone else thinks success is. He is successful to be alive, can feed himself, get on ebay and craigslist all the time. He had to relearn many, many things but we did together. I hope all goes wall for you. What ever you do, don’t listen to what doctors think you should settle for and don’t ever, ever give up.
Good luck and my prayers are with you more than you will ever know and I don’t even know you.
on Dec 8th, 2009 at 6:33 am
This really made me cry… happily.
I am with you and your whole family and will pray for you.
Everything will be fine!
on Dec 8th, 2009 at 5:17 pm
Out of ICU, yay!
Getting mad is a good sign.
Blessings to you and the kids.
on Dec 9th, 2009 at 12:12 am
I have been so touched by your story. My degree is in psychology and I worked in a long term brain injury rehab hospital in both the adult population and child population, and I have to tell you, the patients that had supportive family always did best. It was amazing to see the families that stood by their wives, fathers, and children, to see them get better and go home. Your marriage has been so strong, Anissa is so lucky to have you, and you are so lucky to have her and the kids. Good luck in your fight, I’m saying a prayer and following along. There are many people fighting for you, and angels being sent your way!
on Dec 9th, 2009 at 7:22 pm
you’re in my thoughts.