Would you like to have tea with me? We can talk about our lives? What God is up to? Our struggles? Our victories? Come sit with me where the sun is warm, and the tea is inviting and the flowers pop happy colors and bright schemes of life 🙂
Life is good. God is good. I am good: most days. Even after over a year, post diagnosis, I still live with an illusion. . .this cannot be my life. I wonder, is it a protective illusion or God’s grace? This is not my life, ALS, a health, financial challenge, a betrayal, a loss. . .none of those things are “our life.” It’s a circumstance in our life, but our life is in Christ. So, today, I press into God’s workings on a cellular level in my body. The victories are so beyond me, I imagine the war fought on my behalf and go about my life. . .
My days? I get up when Bucky goes to work, usually back in bed for the morning, listen to online sermons, to read, write, pray, watch my happy birds. . .ponder posts. I work on my book some (Life with the Hourglass). . .read into books for others. . .ask God to lead me to encourage via small things. Mollie, my pup snuggles in bed with me. I drink my smoothie, vitamins and meds. Bucky comes home for lunch, a friend comes in to help. I have projects going at all times. I need to be productive and purposeful. I’ll help make a meal, or carrot bread for the kids. I love to stir or put my hands into the little things that make a house a home like gather a package to mail to Hope. Make Ash her favorite dressing. Rice crispy treats for an after school snack. Fold clothes for Meg. Read with Kathleen or help with a DC project. On Monday, Wednesdays and some Fridays I go to Warm Water Therapy at Womans with Alanna Williams in the Forward Motion Program. Getting ready to go and getting there is a pain, but a dear friend takes me each and every time and we laugh ourselves silly at times. My favorite water therapy power lunch, is a grilled peanut butter and jelly!!! A lift lowers me in and out of the water. I swim and do all kinds of balancing acts in the water. 🙂 It’s a miracle how the water gives life to legs that are like lead on land. It works cells, muscles, nerve connections and cardio that leaves me full of life and well-being. I feel almost normal in the water and the exercise is so good for me. As Alanna, always says, movement is medicine. I come home very hungry. ALS makes the body run a 24/7 marathon in which it tries to repair itself. So I get tired easily and need lots of rest. I usually have greek yogurt or a muscle milk/cookie when I get back from Water Therapy.
I look so forward to hearing Meg and Kathleen come home from school or a hug from their friends!!! I usually clap when I see them. It’s a joy. We have family meals sometimes. Usually once a week, we have one “big” family meal in which the kids invite friends, or a couple comes over and that is another highlight of the week. I have a new “adopted grandma. . .Mama Sybil,” Connie shares her with me! Last night we ate on the porch and talked until it got dark. People are above and beyond generous still, bringing us meals at least once per week. The love is incredible. It’s great to have the house full of life, I absorb it like a sponge. I am continuing the pulse steroid treatment. I get high doses for 4 to 6 days of oral steroids and then I’m off the a month. It’s seems to be helping in some ways. Another battle/trust issue. God go to it within me. Claim victories, only YOU can define. I also go once to twice a month to see Sister Dulce for healing prayer. Friends usually accompany me. Sister draws “life from Frank” to invest in me.
Some afternoons I’m up in my wheel chair and I’m working on being outside more. I do love my porch, with the fountain, wind chimes, bird feeders, sky, trees, and liquid colors in my friendship garden. The life outside, stirs life within and I love a breeze on my face or sunshine on my shoulders. I treasure moments when the girls snuggle in bed with me and tell me about their day. Love to rub or scratch their back. Most nights are sound sleep. Occasional pain we have to medicate in my legs. I have another smoothie at night with high antioxidants and proteins. Bucky does an amazing job nurturing with his hands as he tucks me in for the night. He stretches my legs and feet throughout the day. I massage organic coconut oil into my hands each night before I go to sleep. And the coconut oil is becoming part of my smoothies too. It’s very good for people with ALS. I’m usually asleep by 11, awake by 7:30 and take a nap at some point during the day, maybe 3 times per week.
I sleep and rest on a VPap machine that exercises my lungs and diaphragm. No oxygen, just moving air around. This machine, increases my quality of life and longevity of life by 30%. So I’m faithful about using it as much and as long as I can. . .I wear AFOS on my lower legs. My ankles will no longer support me, so these give support to transfer, stand pivot safely and use those standing muscles in my legs. I need assistance in making transfers to and from the wheelchair. We call him, Big Boy. 400 pounds of power gets me where I want to go. It’s like having a line-backer body guard. I’m very grateful every day for the AFOs and wheelchair.
It’s hard with loss of speech. We are working on ways to communicate better. I miss phone conversations and lunch “ministries” and being out and about more. I take smaller bites now and longer to eat. Taste is a real gift. I find and receive pre-eminent grace in that I take nothing for granted. Nothing. That makes for a rich life in my Jesus because I appreciate, a card, or flower from your garden, or a text, email, a place in your life, a touch more than I can ever express. A bird’s song is like a ballad of praise in my day. A smile is a ray of sunshine. A posture to stand is a perspective up and over the fence of fight. I feel more loved than I ever have in my whole entire life. I told a friend, it’s a nightmare from which dreams are born. Thank you to each and every one of you who minister to us through offerings of prayers, touches, thoughts, drivings, laughter, food, errands, goodness, legacy workings, art, music, and on and on and on. . .My family is experiencing the Body of Christ in ways they never would have known, without this challenge. My husband and girls are growing in depths of compassion and strength I would never have imagined, God’s grace and mercy would extend so far and wide beyond the boarders of my own heart. We all have our tough moments, and you don’t even want to know how many times, I “threaten” to quit, because this is too hard, too big for me and certainly, my family. It calls for sacrifices that I HATE in those around me. Sometimes, i want to scream with an “effect” the disease presses us into. . .But we inch into the next life moment. . .And God shows up and so life grows up and on. . .despite our failings. . .And God always shows up. Not in my time, but in His. Not in my way, but in His. Not in my understanding, but with His.
We go back to Houston, for another three month check up with Dr.Appel’s clinic the first of May. By now your tea is probably cold, I’ve “talked” your ear off. . .I hope you are not too bored. Because I get bored with myself, and am ready, more than ready to hear all about you!!! Much Love, Tracey