Life on a Tether

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“You’re tethered, aren’t you.”

My friend said this to me when I told her about Mary’s new job, which is ten miles away from my house, through many stoplights (There is no freeway to get there). “How is she going to get there?,” she asked. “I will drive her there before work and Ralph will pick her up after work. Riding the bus is an hour each way from our house, so that’s the plan for now.”

“Yes. I guess I am.” Tethered, that is.

I have been digesting this for the last week. Mary’s new job means that our schedule, our time off, must coincide with Mary’s time off. Ralph has now recovered enough to drive, so he can help with her transportation. Which means that I can work late to make up for the hours that I spend at Rick’s appointments.

Sometimes over the years, I have struggled with discontentment. Frankly, it is a common struggle for parents of children with autism (ours), and other disabilities.

When my friends show me their pictures of their vacation to the Tetons, Florida, Hawaii, I dare not let myself think about going there myself. It would be too difficult to manage. The same way, early in the journey with our kids, I dared not let myself dwell in the dark cellar of envy when my friends and family bragged about their kids’ sports accomplishments, scouts, graduating to a two-wheeled bike, etc.

So I set my mind to expect that we would be tethered to our kids long after our peers were free to travel, go on vacations, go on cruises, etc. When our peers sent their kids off to college, we were still driving our kids to college. Five days a week, September through early May for eight years. Our schedules were dictated by our kids’ needs. We have never taken a week’s vacation away from our home. We occasionally have rented a cabin for three days (when they were in college), and camped in our little pop-up camper when they were younger for three or four days at a time. We have visited our relatives for a few days a couple of times a year for several years. But that was no vacation.

We could not go on an extended vacation or even think about going to Florida to visit my parents because 1) we could not afford it due, in part, to the cost of our kids’ therapy over the year, and 2) the logistics of all the preparation to get there.

But If I let myself dwell on the freedom and vacations my friends enjoy, I will end up tainting, poisoning, muddying the joy which God has prepared for us. Teddy Roosevelt said “Comparison is the thief of Joy.” And there has been joy and happiness in our journey.

Our kids graduated from high school, and then college. All three of them. Our goal from early on has been independence to the degree possible for our kids. We are almost there. Mary started her longed-for job two weeks ago, and we are committed to her success because it means she may be able to support herself and live on her own. Patty lives at home with us because we are supportive of her goal to go on to graduate school and study history. Will has moved away from home, and his good job has led to the purchase of his own house. Today we are planning to go to his city and help him move. Ralph can’t do any lifting, but he can help with Will’s cats. That is his job for today.

Our commitment to our kids well into adulthood also has other effects on our life decisions. Ralph’s doctors have not found the cause for his overall decline in health for the last several years. Our doctor (PCP) has now suggested that he go to Mayo or Cleveland Clinic for evaluation regarding his blood disorder, thrombocythemia. Our doctor has discussed Ralph’s conditions with other doctors in the area, including a hematologist with years of experience. This is possibly the next step.

Ralph’s first reaction was “No. We can’t afford it.” My first thought was, “how can we manage it logistically. How can we get Mary to her new job if we have to travel for Ralph’s evaluation?” Not what would be best for Ralph’s health. Our tether influences all of our decisions. We are care givers. I am a care giver for Ralph, as well. We have not even begun to consider the other costs versus the benefits. Will it make any difference to his treatment? What will the doctors at Mayo or Cleveland Clinic be able to tell us that would help improve Ralph’s health? There are only two treatments for thrombocythemia. Ralph has used the best one for 27 years. I don’t know what to do. We need wisdom, brothers and sisters. (James 1:5)

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Again, I return to I Thessalonians 5:16-18.

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

By faith, we look to God in our circumstances. Giving thanks is an act of faith. Prayer is an act of faith. Rejoicing is an act of faith.

By faith, we believe that God’s providence is active in our lives. So we will wait on Him.

And today, we are planning to travel about 100 miles to help our son move into his new house. That is our joy for today.

A Job Achieved

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Today Mary received a job offer/acceptance letter from the company that sponsored her training to become a certified computer technician for a government helpline. She begins six weeks of paid training at the beginning of February.

In April while we were eating lunch at Steak and Shake, Mary told me that she had signed up for computer certification course to qualify for a high tech computer helpline job. (http://annkilter.com/2014/04/07/marys-wishes/).

At that lunch, Mary told me that she was giving up on getting a job in accounting and was going to try something else. She had graduated in 2010 with a bachelor’s degree in accounting, and had not found a full time job.

So this summer and fall, she took a 15 week course for computer certification. I took her to her class for 12 weeks every Monday and Wednesday evening. Then Ralph ended up in the hospital with a bowel obstruction. All of a sudden I couldn’t take her to her class. The building is an hour bus ride from our home. My plans for providing her with transportation fell apart. I didn’t know what to do. I cried out to God.

Then one of the gals in my Sunday School class took charge and arranged rides for Mary during the last three weeks of her course. She also arranged transportation so that Patty could get to her TA job at a local college. I cannot begin to tell you what a blessing this was to our family and especially to Mary and Patty.

Mary passed the certification test on the first try.

She had to get security clearance because this job is for a government contractor. And she starts the beginning of February with six weeks of paid training. Then she will be a Tier I Help Desk Technician. She will be paid a living wage, with health benefits. God’s provision is wonderful in the midst of trials.

I told Mary that the events of this fall demonstrates that we cannot be depended on to meet her needs. I pray that I will be able to take her to her job, and maybe if Ralph recovers enough, he can retire and provide transportation, but there are no guarantees. She may have to make arrangements to live on her own and find her own transportation (by bus most likely) sooner than we had planned. Maybe we will move to a two bedroom apartment closer to her job by bus and she can live with us for a few more years.

Still, she received the email with Job offer/acceptance letter while we were out shopping today. As we were driving home, she said that she had spent the last two hours in a state of pure happiness.

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Home Sweet Homes

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“I will just live in a box, then,” said Will when he was eight. This was in response to my insistence that he do a better job sweeping the floor. I had said that learning to do housework would prepare him for living in his own apartment when he grew up.

My boy is planning to be a homeless person, I thought.

Flash forward 16 years, and Will moved into his own apartment.

Another three years and…

Will is in the process of buying his first house. He is very excited. So are we.

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I can visualize little ones coming down these stairs in his house on Christmas morning. Some day.

The house has passed inspection and the appraisal. It’s just a matter of time before he signs the papers.

He began by looking for a two bedroom apartment. Then someone from his church suggested that he buy their house, so they could move to Florida. The house has been flipped. New wiring, new roof, new furnace, and all the appliances.

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When he was eight, he had therapy at school, at home, and with outside therapists for his autism. Now he has a good job and is buying a house. Amazing!

I can’t wait to sit outside on his back deck with a cup of coffee.

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New Year’s Goals, Wishes, Changes, etc.

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2014 has been a rough year, or at least the last third has been a rough year due to Ralph’s health issues.

But here we are in 2015. I am not going to make any resolutions, but here are some wishes, changes, goals, and events that I would like to see for this year.

1) Ralph to gain 10 good pounds. Not due to edema. Muscle and fat would be good.

2) Direction from all of his doctors together regarding effective measures to restore his health.

3) I would like to simplify my life.

4) I want to get rid of more stuff. Last year I took several trunk loads of stuff to Goodwill. A large, old four bedroom house with walk-in closets and a full basement can hold a lot of stuff. I am not a hoarder, just a forgetter. Out of sight, out of mind they say…and there is plenty of room here to put things out of sight.

5) I would like to see Mary get succeed at a full-time job and move toward independence. Maybe get her own apartment.

6) I would like to move to a smaller place, with fewer maintenance needs and outdoor chores. (Part of simplifying my life).

7) Patty to get into grad school and move away from home.

8) Patty to get her driver’s license, and help me with some driving chores this year before she moves away.

9) Will is in the process of trying to buy a house. I would like to see him do that.

10) Do more things together with Ralph. The last few years, as the kids graduated from college, I’ve had more “free time.” I filled up that time with choir, our local writing group, my scrapbooking group, my quilting group, and other activities. Ralph’s health problems have brought a screeching halt to all of this. I think/hope he is starting to feel better. I want to be very careful about what I add back in. I want to include something that is “us” time on a regular basis. And I did go to scrapbooking and quilting last month. Those are once a month meetings. Writing was twice a month, and choir is a big commitment (once a week and some Saturday rehearsals, plus Sunday). I need some ideas for “us” time.

What do you hope to see for 2015?

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Uncertainty

The last time I face this much uncertainty in my life, I was 25. I was a week away from graduating from college, and I had just found out that I had a cyst the size of a grapefruit on my left ovary. The gynecologist at the college said that I needed surgery as soon as I could get it scheduled. I told her that I wanted to walk across  the stage for my graduation, and I wanted to have the surgery at a hospital near my home. So she gave me a referral to a specialist near my hometown.

I remember sitting on the edge of a large sculpture at Michigan State University, looking out to the distance and praying. It was very early in the morning and very few people were out. I can’t remember the exact words I said to the Lord. But I remember surrendering. Not my will, but thine, I said. I could not see the future.

After graduation, I went home and saw the specialist. Before surgery, several tests were done. After the ultrasound of the cyst, he told me that it didn’t look good. He told my mother he thought it was ovarian cancer, but he didn’t say that to me. After the five-hour surgery, my mother said he came out of the operating room with such a look of relief. It was Stage IV endometriosis, not cancer. After eight days, I went home, still not knowing anything about my future except that I wasn’t going to die of ovarian cancer within the next year.

Today, I am taking Ralph to the cardiologist.

When Ralph was in the hospital for pneumonia, they took an echo-cardiogram, and he was diagnosed with congestive heart failure, pulmonary hypertension, and cardiomyopathy. Today the cardiologist will begin the process of finding out the degree of disease and course of treatment. Or at least we hope he can give us more information. I don’t know what the doctor will say. I just have a list of diagnoses at this point.

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There are a lot of unknowns in our life right now.

Will Ralph recover enough to go back to work?

Should he go back to work?

If he goes back to work, will they keep him or will his job be gone? His FMLA runs out as of Monday, and he is definitely not ready to return to work at this time.

Will he be able to drive again?

Will his insurance run out? If his short-term disability is not renewed, he will not have insurance through his company. Insurance for him at my company is prohibitive and would take 3/4s of my income each month. I don’t know if we will have health insurance next month.

Will he recover enough from his surgeries and pneumonia to enjoy his life? At what level will he be functioning? What kind of care will he need? Will I be able to keep my job or give it up to care for him?

Will we need to move from our four bedroom house to an apartment? To a condo? Or will we stay here? I don’t know.

How will Mary get to work if I can’t take her? What should her living situation be? It looks like she is going to be hired for the government call center as a computer support person.

I told my friend Trinka last Sunday night, “The last time I had this much uncertainty in my life, I was 25 and facing surgery for the what the doctor thought was ovarian cancer. Only this time, I have more responsibilities.”

I have to think not just about my own life, but about the lives of my loved ones. I can’t envision the future beyond the next month, sometimes, not beyond the next day.

But there are some things that I do know.

I know the God who knows the future.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28

I know the God of whom it can be said, “His Love endures forever.”

I know that God loves us.

“For God so loved the world that he gave his only begotten Son, that whosever believeth in him should not perish, but have everlasting life.” John 3:16

I know that God desires that we go to him as well with our burdens.

“Cast your cares on the Lord, and he will sustain you.” Psalm 55:22

I know that God answers our prayers for wisdom. I sure need some right now, but that is what waiting on the Lord is about…waiting to see what he will bring to my attention or knowledge.

I know that God has provided for us through the prayers, and acts of kindness from those around us.

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