I keep thinking that being home will be relaxing, but it’s not! I envision baking cookies, reading to the younger children, and playing games with the older boys. I shouldn’t be surprised that it never works out that way, but I always am.
I arrived home Sunday night in time to go to the boys’ basketball banquet. It was great to see people from home and eat homecooked food! However, less than an hour before arriving home, I learned that Luke had gotten the stomach flu in the early morning hours, so he wouldn’t be going. I attributed it to the crazy late night trip to Mayo on Friday/Saturday, but then Elisabeth got sick Monday morning. That definitely took care of relaxing!
One of the most common comments I get is that it must be good to be home. While I am thrilled to see the kids, it is actually “easier” to be in Rochester. I put that in quotes because it is not easy, just easier. Since Mike cannot always communicate well, I am always concerned when I am not there. I care about him much more than anyone there does and feel a strong responsibility to be his advocate.
On that note, I “fired” the occupation therapist today. That was a tough one to do from home! The occupational therapists work on the activities of daily living, and particularly work with Mike’s right arm. We had consistently not been happy with what she was doing, so I finally decided Mike had had enough. It is too critical of a time to just put up with someone. Talking to her supervisor was very hard, especially when she told me that they didn’t think Mike had a problem with the therapist. I am hoping that tomorrow goes much better in that area, so we’ll see. Mike said that the other areas of therapy went well today. I am hoping to see a lot of progress when I go back on Thursday.
With the nice weather, Mike has also enjoyed getting to be outside some for the past three days. It may get cold again, so I’m glad he is able to get out now. He did try to escape on Saturday. The sun was not in the courtyard area, so he just wanted me to wheel him out the front door onto the street. He wears clothes now, so we probably could have gotten away with it, except for some reason the hospital wants their wheelchairs to stay there!
With Elisabeth being sick, I was able to have some good conversation with just Gabbie tonight. She is very happy when I am home, and sad when I am not. We have worked out a plan to help her be happy when I am gone again. She also said that she just wants everything back to normal. She followed this up with saying that she knows Dad still won’t be able to do a lot, but it will seem normal to have her whole family back together. She also must have said at least 10 times today, “I really love my whole family.” Now that warms a mother’s heart!
Mike Evans' blog 
Good to hear you got home okay, but sorry about the sick kids. There is always something. Rachel was sick with a fever on Mon, too. My surgery was rescheduled for next Mon (the 23rd) so I will be busy preparing food and cleaning this week preparing for my recovery time! See you when you get back.
Denae
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Dear Karla,
Nothing is easy at a time remotely like yours — Mike off balance you off balance and all of the kids off balance = something less than relaxing or normal.
However, I have no doubt that huge faith building things have been happening in the midst of this as well — no doubt.
So glad to hear of Mike being in therapy day after day and making progress and wanting to be in the sun. What a grace and mercy it is that he is here at all — and a greater grace that he is doing so well…. I Know, I know there is such a long way to go. But you only have to do it one day at a time, and Lord Jesus has promised to be with you on each and everyone of those days — ‘all of the days’ even to the end of the age.
Randy
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Sorry to hear the OT troubles as I have had similar issues with therapists in the past as well. It is VERY hard to speak up rather than to just accept the present person. You often second guess yourself and wonder if you are overreacting, but after finally dealing with it, you feel so much better and wish you would have dealt with the situation sooner. It IS a critical time period for Mike and if the therapist isn’t working on things you want, possibly has a personality conflict with you both, or doesn’t seem very motivated, then changing is important! I will be praying that the next OT is a great fit for you guysss…
OT often is a harder therapy to feel you are making progress in. PT and SP you can really see the “work” and progress, whereas OT is often accomplished through so many basic, minute things that don’t feel like therapy and can be frustrating. Lifting the arm, bearing weight on the arm, picking up things, holding things, moving things with the arm, bathing, changing clothes, buttoning, zipping, etc. are quite common but often feel unproductive, but actually necessary. Often OT can become too repetitious with some therapists and it is great when you find an OT that accomplishes similar goals with totally different activities to mix it up and keep the patient motivated.
I also understand the conflict between being home and being at the hospital. Life is easier there because your focus is on ONE person and all else is at a distance. It doesn’t matter what the house looks like or how you look or what you eat, no cooking, cleaning ,schooling, etc… Just supporting the one you love and being there making sure things are going as they should. Sometimes it is also hard to be back home again and to have to readjust to the hecticness of the normal daily activities that we deal with. It can sometimes feel overwhelming, especially if you are still worrying about your loved one in the hospital being so far away. So sorry the kids are unwell. That doesn’t make things easier for sure… We will be praying for their health and for Mike to continue making progress and returning home quickly…
It is precious to hear your daughter say how much she loves her family. I have seen your love, compassion, and godliness through this process and it has encouraged me. What an example…
“A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good , not harm, all the days of her life…. Her children arise and call her blessed; her husband also, and he praises her: “Many women do noble things, but you surpass them all.” Charm is deceptive, and beauty is fleeting; but a woman who fears the LORD is to be praised. Give her the reward she has earned, and let her works bring her praise at the gait.” (Prov. 31:10-12, 28-31)
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Mike, Karla and family,
Just a newsy little note of encouragement to you. Now that temps at home are almost what they are here I am beginning to get homesick. I can understand how you, Karla, are torn between the two places. Hang in there! Sorry you have had sick kids but I know they are glad for their mother’s loving touch. Mike, keep up the good work in theraphy, God be with you.
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I can’t imagine the weight of being unable to be in two places at once and wanting to provide support at both ends. You must be emotionally and physically exhausted. I pray God will give you the rest you need as He has promised. May you experience the true peace that only He can bring.
Praying,
Lisa Dailey
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Hi Karla, You were correct to fire the OT. You must follow your intuition. Mike must be comfortable with his providers and, unfortunately, at this time you must be his assertive voice. God wil give you the strength that you need and the wisdom. You need only to listen, discern and act confidently (as you did). As for the stuff at home, ask for help with whatever you can. Friends/family do not know how to help and if you can tell someone to start a meal delivery calendar,clean the house, do laundry, it will be a gift to them. I know it is hard,but let God’s children show their love in this way!
Robyn (Frey)Swenson ’87
Brain Tumor Survivor
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