Tea Time: April 8, 2013

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Dear Friend,

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 πŸ™‚

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. πŸ™‚ 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

22 thoughts on “Tea Time: April 8, 2013

  1. Tracey
    Wow you are amazing
    What a gift of communication God has blessed you with!!!!!
    My thoughts & prayers are with you often
    My prayer is that you ask me to do ANYTHING for you
    Please please please let me know if there is anything you need
    There is nothing I would love doing more !!!!
    Also can you add my email to your tea time with tracie newsletter

    May God continue to give us your friends family readers strength as we witness through you that we all carry in our hearts we can do all things through Christ who gives us strength.
    Thank you Tracie for your many words of wisdom and peace:)

    • Hey Dania, Thank you for reading and your gracious response! I appreciate your sincere offer to help and I will keep that in mind! Appreciate your kind words! love, twe

  2. Dear Tracey, Thank you again for your transparency…it is humbling and encouraging, frustrating and freeing, to admit (more often than I sometimes like to do), “I need help with this…” As with you, I am surrounded by loving friends and family to support us spiritually and who live by the motto that has become our banner: “NEVER STOP PRAYING!” We continue to pray for you and your sweet family, and so appreciate your prayers for ours. There are friends and family, and friends of friends, and friends of family and friends and their Bible study groups and prayer groups who now add you and your family to their prayer lists. What a wonderful heritage we share, because those friends of friends of ours who pray for us, are really family,..children of the One whose Heart is moved with compassion for the needs of His children. Always in prayer, B

    • Dear Boydrea, Thank you for your kind and supportive response! πŸ™‚ What a mystery prayer is, but what “power we have in Him” as we approach the throne with confidence, transparency and praise! KEEP PRAYING! I too am praying for you! love, twe

  3. Great post, Tracey. Thank you. I’m in “this cannot be my life” too. Your words encourage me help me get my mind off myself.

  4. I LOVED having “tea” with you this evening. You minister to me more than I could ever put into words. I will never ever ever forget how much your words meant to me when you spoke amazing insight and blessings over me. Bless you, sweet friend!

    • Hey Liz, So good to hear from you. We share a mom’s heart. I remember our words and still speak them over you in my prayers! Thank you so much for commenting πŸ™‚ Blessings back to you, twe

  5. Tracey,
    Thank you for inviting me to tea and sharing your day. Do you remember our Friday nights in high school when we would share a cup of Suisse Mocha coffee? We’d talk of boys, school, life, future and yes, God, and then more about boys! It was special then and is still special now.

    • Hey Catherine, yes, I remember my mom started buying swiss mocha because you like it πŸ™‚ Yep, you are the “oldest friend” I have πŸ˜‰ “Blue-eyed farm boys” from Iowa sparked much discussion! Much love, tracey

  6. Tracey,
    You are incredible. You “climb Mount Everest” every day by just standing and pivoting to your wheel chair. You are productive with your friends and family beyond what most would attempt (ALS or not). You will leave such a legacy for those around you. I am blessed to have you for a wife and will always be here for you……Bucky

    • Dear Bucky, As you said post diagnosis, “together we meet the world with a steady hand.” It still holds true. I am empowered through my days and nights with your patient faithfulness. Please keep praying over me when you think I’m sleeping. I only catch enough words with the noise of the AVaps machine to know you are at His throne on my behalf. I love you for that and soooo much more. . .Thank you for your perseverance with the little (like scratching my right heel) and big things (like a wheel chair that costs enough and is high maintenance like a race car!) Gratefully, Yours Forever, twe

  7. My tea is not cold and would love to hear more….keep sharing!! I love having a glimpse into your day and into your family. Thanks for letting us be a part. You inspire me and teach me so much more than I can express. Now, off to my day…here is a glimpse. The neighborhood cat had kittens at our house. One escaped, so Annelise and I are searching and praying for it before a predator finds it. We are creating a make shift home for them in her playhouse until we find permanent homes for them. Any takers? They are really cute!! Yay! Annelise is calling me. The kitten is back! He just “appeared” at the back door with Mamma cat…we were just there too!. God answered our prayer. Matthew 10:29-31

    • Hey Marguerite, Thank you for reading through to the end πŸ˜‰ Could have said so much less and so much more? Glad you had a sweet momma/kitten experience. So tender, those mommies are with their babies! Enjoy! twe

  8. Thank you for telling about your days. It is Good to hear of both the blessings and the struggle. You are so deeply in my prayers! I love you.

  9. I enjoy your posts so very much. They make me pay more attention to all of God’s gifts. They make me want to know Jesus better. I look for your posts every day and they are never quite long enough πŸ™‚

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