I know that I am a very upbeat person, some would say "Bubbly" but that's not a description of a whole person. Joy and enthusiasm and all the things that go with it are like a well that continues to overflow and flood the visible parts of who I am. It's the deeper, quieter, easily overlooked parts that are actually the bedrock of me. On my facebook page I state that : I might be a bubbly person but I am also someone who likes to ponder things. I work hard, play leisurely and love God with all my might. I think the blending of both of these aspects help me to cope with Bob's disease.
As a resource for coping, occasionally I cruise thru a forum for caregivers of Parkinson's Patients. This forum is not for the faint of heart and although Bob does not have true Parkinson's they often deal with many of the things I do. It's a good reference source - It gives me more knowledge on how to handle things - like Dr's and Nurses, Surgery and Meds. I found advice on how to travel with Bob and it helped our trip to Arizona run smoothly. For example not all of Bob's necessary medications are prescription and since some of these are ingested in large amounts the liquids don't fit the category of 3oz and powders would/could be suspect. We were able to find pill forms, prepackaged powder doses and cookies that would take care of his needs and not cause the "Powers That Be" (or PTB's) a hissy fit.
Some of the posts are heartbreaking, but the others always seem to come along side to help encourage and support the struggling caregiver.Recently there was a person was really struggling and she was glad to see the honesty and struggles of others so she didn't feel so alone and inadequate. She had evidently been exposed to others that were "Little Miss Mary Sunshines". I don't know where she experienced this but I will say that there are those who seem to breeze thru this challenge and I hope that I am not one of those.
I want to be honest and real about how Bob and I are coping. Do I grieve? Yes! Do I get angry and scared? Yes! Do I get exhausted, overwhelmed, sleep deprived and become a ugly human sometimes? Yes! I fail often, and sometimes it's hard to not respond as a wife instead of a concerned caregiver. It's not always easy to tell if he's being challenged by his disability or he's just being a husband. We both wear two hats and sometimes you can't tell them apart.
So in the posts in this blog I have shared some of the deeper things that have helped me along the way, my Faith, the Word of God and the things that get Bob and I excited - the little (which are huge) victories, an inspirational song or testimony. Maybe these can help you too. But I don't want to neglect to show the hard things, it's not always sunshine and roses, and recently I have been reminded that we need to not only celebrate and give thanks for the "good" things it is very important to give thanks for the hard, even ugly things in our lives.
The word "Eucharisteo" has recently come to my attention, on the surface it means "Give Thanks". Where we see it used in the Biblical texts is when Thanks are given Before the miracle. If you break the word down into it's parts there is "Charis" which means Grace and the root of that is "Chara" which means Joy. So when we see a word that means give thanks that has grace and joy deeply rooted in it and it is commonly seen before the miracle - what can we say? We receive grace and joy when we express gratitude - especially in the midst of things we would not normally be grateful for. The lesson goes on to say "Thanksgiving is the bridge to Joy... from the not enough to to the more than enough. A further thought is - when are we going to not allow our circumstances to dictate how we live? Emotionally, Spiritually, Relationally? How will you choose to live?
I will choose to live as God sees fit to have me do so. As Philippians 4 says " In Plenty and in Want." For what reason, only God knows, Bob has this disease, so how will we choose to live? We will give thanks, we will be grateful. For the time we have together, for the providence of God in providing what we need. In the midst of want we have plenty.
If God had asked me to write my story it would have been vastly different. Children, comfort, long life, "The Golden Years" of retirement- we all know the dream. But that's not how it's turning out. We never could have children, we are far away from family, we live simply and will never "Travel the world" together, or grow old together. But there is a cautionary tale here. Be careful when you finite man that you are try to write the story. You might miss the very best blessings of all, miss the opportunity to change someone else's life or create something far worse than you are experiencing now. A King of Israel as he was dying was granted his wish to live and he was given another 15 years. He had been a good king but in those last 15 years he made mistakes and failed badly and sired a son who was to become known as the very worst King that Israel ever had. I believe I'll let God continue to write my story, He has a much better vantage point than I do.
One last thought - What good is it if you give praise and gratitude when things are going well? If you die or sacrifice for someone you love? Isn't that expected? As it should be? How much more valuable is it to be thankful and joyful when life sucks? To be grateful when hard things happen, to find joy in the midst of hard things, to sacrifice for the unlovable? In expressing gratitude in the midst of pain, hard, grief and want we recieve God's Grace and Joy and we can choose to not allow our circumstances to dictate how we live.
I live a hard life. He's dying. I work hard. and am required to perform unmentionable tasks. And I will rejoice that I am able to Love him, Care for him, Be with him. I will rejoice that we are going on our 34th year together and I am so vastly thankful that I know that when he leaves this earth he will be in the presence of God. You have no idea how much gratitude I have with just that one thing.
We hope you have a wonderful Thanksgiving and that when you give thanks for all the blessings that you have, all the good things you can name, remember the hard things and see how they can also bless your life and give thanks for them also. Practice Eucharisteo.
Susan
note: The lessons regarding Eucharisteo have come from 1) Ann Voskamp's Book "1,000 Gifts" and readings from 2) Oswald Chambers "My Utmost for His Highest" and 3)Teachings from the Women's ministries at Crossover Church in Mead, Wa - I have blended them all together and posted my combined "Take away"
Susan, you are a brave loving person and the love and care that you are giving to Bob is a demonstration of the best of us as a species. Anyone can run, but only a brave person could face heartbreaking difficulties head on. We love you.
ReplyDeleteThere are things you've said here that I wanted to share with you a few years ago but the time wasn't right. Intellectually I too know that God has a reason for everything, and for each of us there are areas in our lives that that knowledge is easier to accept than others. We've both been denied the gift of our own children, and I feel from some of your writing that it's caused you to feel some emptiness and sorrow. But now as you are able to look back from a life that is further along you may be able to have a perspective on what God had in mind for you and how His plan was being designed for the work you were to do and the testimony you and Bob were to give about His grace gifts. I knew pretty early on that we wouldn't have kids, and had about two hours of "pity party" questions before I totally understood that God had given me many kids, special kids picked out just for me. He brought them TO me, when the time was right, and He made me available to them because I didn't have any of "my own". I have always been keenly aware of that. And when my medical problems started happening so I couldn't teach, and I was more often stuck at home I was even more available to the kids, and then to others. There were more and more friends with medical problems, needing help with insurance, financial assistance, looking for information about their medical issues, just wanting someone to talk to about their difficulties. He showed me I was using the talents I'd learned going to college and while working - research, organization, talking to people, asking for free stuff! - to get and share information with the people who needed it.
ReplyDeleteYour reminder that we are "... to give thanks in ... want" is really hard to do sometimes, and there have been many nights when I take the dog out for her last pee visit, look to the stars and tell God that "I just don't get it." I do plan on getting the answers to some of my questions in the future, and I greatly appreciate that sometimes He lets us have a glimpse of how our hardships actually do bless us - it puts in places and around people who share, support, encourage, love, protect and uplift us, people who carry us forward which allows us to do the same for others as we continue to move forward in God's plan.
Keep moving forward, to the high ground, one step at a time. We're all praying for both you and Bob. Deborah