Joanne's Perfect Day (Toben)

Over the last year, sometimes I will ask Joanne to describe her perfect day; as if God could restore her body and mind for 24 hours. It changes some every time I ask her depending on what's going on in her life at the present moment. I asked her again tonight and here's what she said:

1. I would wake up early and just walk around in my bare feet. At present Joanne wears and ankle-foot orthotic (AFO) that goes on under her running shoe on her left foot. It is cumbersome but it makes it possible for her to get around with a cain. But what it also means is that she hasn't been able to just jump out of bed and go or do and she pleases. She misses the feeling of her bare feet on carpet, and the hardwood floors, on the grass. So first things first--walk around barefoot.

2. I would go for a five mile run. This is always in Joanne's list. She loved to run in the cool of the morning. She would load her iPod with praise music and run and sing her heart out. I never saw her come back from a run without a smile on her face.

3. I would come home and read a book.

3.5 I would get to do my own haier and makeup, pick out my  own favorite outfit, accesorize and most importantly, wear cute shoes (preferably heels and the higher the better). Joanne basically has one outfit that we put her in every day. It is an outfit that she can manage on her own, it is modest, and it is lightweight and cool. But the only variety is today's color of t-shirt.

4. I would have friends over just to hang out. Joanne has always loved to have ladies in our home. She has hosted teas, Bible studies, knittign circles, book groups, etc. 

5. I would plan a meal, go grocery shopping. In the last year and a half Joanne has gone to the grocery store maybe 6 times. It is exhausting and overwhelming for her and she HATES to go. But she used to like it. So grocery shopping goes on the list.

6. Maybe I would  go on a little shopping spree with a couple of more friends. She LOVED to go to Anthroplogie and hasn't been in more than three times in the last 18 months. Great place to window shop.

7. Cook a meal and eat as a family. We used to be really good at this, but our meal routine has sort of dissolved since the stroke. We all sort of eat on our own schedule when we are hungry. The exception being that Joanne and I always eat together. The kids sort of drift in and out based on homework and whatever dinner they are preparing for themselves. Audrey is a vegetarian and the rest of us are not. Ergo, Audrey cooks for herself most nights.

8. I would take a long bath or shower (or both) unassisted. 

9. I would hang out with the girls until bedtime.

10. I would read a little more.

11. I would go to be with no pain. 

Pretty simple stuff but also profound to me. I look at this list and think, "There are things in there that we can do! That's great!" But the flipside isthat a lot of the most important things to Joanne she can't do at this point. Some of it is mental, some physical. On top of that, pain management is a huge factor. There are probably a few more of the above mentioned things that she could be involved in but she hurts all the time, day and night. I can't even begin to imagine what that's like.

Joanne, through a series of events, decided it was time to quit morphine. She has been on it almost continually for 18 months. And from what the doctor says, she is in massive withdrawls, just as if she was quitting Heroine or some other heavy narcotic. She has been feeling miserable. But the flip side is that she is mentally more alert by about 20%. But her pain is back. See, that's the devil in all of this. We can keep her out of pain and lethargic or we can allow her to experience some pain but be sharper. These are hard, hard choices to make. Withdrawls last about two weeks and she in on about day 10 so things are starting to get better. Just imagine having the worst flu ever and that is what withdrawls look like.

Back to the list. I have to read between the lines here. This list is a great learning opportunity for me. It reminds me to make sure that no matter what she has on, she can always accessorize (I think I have mentioned her love for big rings). I can have her friends visit more often. I can try to get her more focused time with each of the kids--that's a tough one and will get a post of it's own in the next few days. I can keep her involved in planning menues even if she can't do the shopping or much of the cooking.

I think the two most heartbreaking things for me are that she can't run her five miles everyday. She LOVED that and it got her off to the right start and returned her home very centered and ready to take on the day. The other is the cute shoes thing. I'll just say it: she has to wear ugly shoes. They are the only ones that will fit over the AFO. Joanne has a closet full of shoes, many of them come attached to a story of how, where, when and why she bought them. To have them sitting there in the closet is almost like taunting!

So it's now 2 a.m. and I think I better be wrapping up. I have to be up with audrey in 3 hours. 

Prayer Requests:

1. Please pray for a speedy end to Joanne's withdrawls. She has had nothing but broth, toast, applesauce adn ginger ale for 10 days. Yuck! Along with that, please pray that we would find the right combination of non-narcotic pain meds to keep her a little more comfortable

2. Please pray that God would continue to grant me the wisdom to read between the lines and to help Joanne get some "wins" in some of the things she misses or wishes she could still do.

Toben

Comments

[Jeanie in KS]

I have no experience with stroke..I have fibromyalgia and my mother has degenerative spine disease. My mom has suffered through narcotic withdrawals and I know how brutal that is. I'm sad that anyone has to experience it. I have taken a drug called Savella for about a year now and I think it is a miracle for chronic pain. My Mom began it last week and already has felt a difference in her pain level. It has minimal side effects. Just passing it on for what it is worth as sometimes docs don't think through all the options for pain management. I have long followed Joanne and have a couople of her books. It makes me sad to know her life has changed so drastically because just from reading her I know she was a very active and vibrant woman.
Even in this time of trial, however, her true love of Jesus shines through in the words she puts to paper. Thank you, Toben, for continuing her blog and updating those of us who originally fell in love with your family through Joanne's writing. Your family is part of my prayers.

[Karen Booker Schelhaas]

I have prayed for all of you so much. I check in with the blog and want you all to know that your story has been profoundly impactful to me. But I know an "impactful story" doesn't make your day any easier, and I pray for an easing of some of the hardships, and a return to some of the things Joanne enjoys. I hate the shoe thing for her. I've heard that the difference between hope and despair is a good night's rest, but I beg to differ. Sometimes I think it's a new pair of shoes!!! Praying for some kind of solution there -- I know God cares about those details. Thanks for your authenticity -- appreciate all of you so much.

[Cathy King]

Thanks for the update, Toben. I have been wondering how Joanne is doing. I can't begin to imagine what her life is like after the stroke. Am still praying for her, you and the girls. So proud of you and Joanne.

[Heather Gerard]

Wow. It's just amazing the things we take for granted. My prayers are for strength and wisdom for you, Toben. And healing and restoration for Joanne. I always pray that God's presence will be so close with your family and that He will continually lift you up! You all are amazing and have truly impacted the way I think about life! May God's peace and love be with you.
Heather

[Gretchen]

Praying. And giving thanks that you choose to glorify God by sharing your journey of suffering & hope. I'm sure you both must get so weary. May God's love feel palpably near...

[Chere Williams]

Hi Tobin,
I just have to say how inspiring your family is. You are a testament to so many and God has truly blessed your family with the strength you need. When I read this blog post I was reminded of how many days I have taken for granted and how much I would miss doing the simple things if they were suddenly taken away. I write a blog and had to post this with a link back to the Simple Wife. I am a single mom and there are days that I am exhausted and a little ranky and after reading this I am ashamed. I posted your blog because you and Joanne are an inspiration and I will continue to pray for her full recovery and for you to keep up your endurance and faith. God is good and with him all things are possible. God bless you all and thank you for this post.

Chere Williams

[Jean]

Sending thoughts and prayers to you and Joanne today! I will particularly pray for the withdraw and the pain. Chronic pain just leaves us emotionally and physically wiped out.

[Nicole Beurkens]

I sent you an email a few weeks ago, but I don't know if it got to you or not. I have been following your blog since the time of the stroke, as a friend asked me to pray for you and your family. I am a clinical psychologist specializing in neurological issues. I would like to suggest that you consider Low Energy Neurofeedback (LENS) as an adjunct to your current treatment. LENS is noninvasive and highly effective; and it has a very good track record with restoring function following strokes. You can get information at www.ochslabs.com. I'm know there are some practitioners in Colorado. I'd be happy to connect with you more about this if you are interested. I firmly believe it would help reduce the pain and restore function. Feel free to email me at nicole(at)horizonsdrc.com.

Best Wishes,
Nicole Beurkens

[Pam Houston]

Dear Toben,
Honestly I am amazed at your fearlessness in face of the adversity in your beloved ones life. Praise God that we can depend on Him, no matter what it looks like, "We don't walk by sight..." "He will certainly accomplish what He has decreed for me..." Job 23:14. He who chose us for eternal life has also planned the path by which we are to reach it. Nothing ever happens by chance: "Every cross is a mercy, every loss a gain, every trouble a rich blessing and every trial a seed of joy! (James Smith - 1850)...Praise God that it is an immutable fact that the same love that planned our trials, also provides the strength to bear up under them. My prayers are with you as you and Joanne get the strategies to overcome the morphine addiction. I believe that the LORD will crown your efforts with success and Joanne will be able to begin to move forward. Also, I couldn't help be moved by the hope offered by Nicole Beurkens and the LENS therapy. Praying for the will to effort and the new hope to be revealed. Joanne has a voice and believe me, her voice will be heard! I believe that and am praying accordingly. Your lives are rich with purpose and meaning and may you keep your eyes fixed on Jesus who loves you perfectly and is only motivated by His great love.
Your sis in Christ from So. Cal,
Pam Houston><>

[Margie Smallman]

Hi Toben and Joanne :-) My family COMPLETELY relates to this whole description. We live it too. We've gone through the struggle to remember what we still have more than we look at what's gone and what's gone is huge, just like you both understand. It's the unexplainable grace of God that gives us what we need every single day that has kept us sane and given us joy in the little things.

Like you mentioned with the big, fun rings.... the daily T-shirt can also be a creative one instead of plain. Grocerystore trips can be taken at lowest possible busy times. I'm sure you know that! Also, at some point down the road, it is far kinder to pass those adorable shoes on to someone who can wear them instead of them being a painful reminder of a loss.

We pray for you. We understand.
Margie

[Kim Feth]

Praying it with you!
Peace,
Kim Feth
Apex, NC

[BHS]

I remember reading a fairly recent blog post in which you mentioned a comment by Joanne while watching a runner; something along the lines of "I hope she appreciates it." For whatever it's worth, I'm a runner and ever since reading that particular blog post, I do appreciate it. Everyday. More than ever. So I just wanted to say thank you, and I think of your family often, with great admiration.

[Christian Louboutin High Heels]

Speaking from a daughter with a father who would do the same to protect me, That is a wonderful thing you do for Audrey! Safety is certainly a MUST.

[kelli]

Toben: I only "know" you and your family through this blog, but this tragedy seems to have made you a better father and husband (and I hope this comes across as a compliment!). I see you looking for ways to read between the lines and searching for ways to improve the lives of Joanne and your girls. I am praying for a miracle for Joanne, but I am thanking the Lord for the love and strength you are showing your family.

[Carrie P]

Hi JoAnne & Toben, thanks for letting us know how you are doing. Your honesty and faith have amazed & inspired me. I will continue to pray for both of you & your precious girls. Your posts have really shown the deep love you have for Joanne, Toben. It is a beautiful thing to witness. And Joanne, I miss hearing from you! I pray that your pain will be completely healed.

[Marian]

Your love for Joanne pierces my heart. LOVE NEVER FAILS! I know it is so very hard, for all of you, but you continue to be lifted up in prayer by the blogging community. xoxo

[Sherry]

Toben, you have been an amazing husband and father through all of it. Not every decision you make is going to be the right one, or the perfect one, but you get up every day and do the best you can do. Your love for Joanne and your girls shines through every post, every struggle, every joy. Keep on doing what you're doing. You rock. Lots of prayers to all.