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.
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.