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Provision

21 Wednesday Sep 2016

Posted by Ann Kilter in Autism, cancer, faith, Health Crisis, Miracles, Thankful

≈ 2 Comments

Tags

autism, cancer, faith, miracles, provision

On June 10, 2016, Ralph received the diagnosis of myelodysplastic syndrome (a rare bone marrow cancer). He started on chemotherapy the next week. We were told that his prognosis was six months to two years to live. Before he started the chemo, we were told that any fever of 100.5 and above was a reason to call the doctor, day or night due to his significantly impaired immune system.

Someone said to me on a support group Facebook page “dust will be your husband’s enemy.” That shook me. We need to move, I thought. I remember going downstairs to do laundry and looking up at the rafters in the basement with dust all over them. I stood at the washer and I prayed, ” Lord, what am I going to do?”

God heard that prayer. Wrapped up in that prayer was the thought, How will I care for my husband in this house?

And it was as if he said, ” Now you will see what I am going to do.”

Saturday morning, July 2nd, I suggested to Ralph that he could take some money out of his 401(k) to help Erin with a down payment on a condo. He agreed. The next morning, he said to me, “I’m sorry to disappoint you, but don’t think we are going to be able to find a condo.”

“I think God will provide a place for us,” I said. “Look how He has provided for us in the past. He provided a way for you to go to college and graduate with no debt. He directed us to move into this school district where our kids got the help they needed for their autism. He provided a job for me before the kids went to college. He provided the money our kids needed to go to college, graduate, and kept us safe during that time of taking them back and forth to school. Don’t you think that if God provided all those things, He will provide a place for us to live in our time of need.”

Ralph went to the computer. “I’ll look, but I don’t think I’ll find a place.”

“Well, here’s a place. Two bedrooms, two baths. Maybe we can go over and look at the outside of it. To see where it is located.”

I then sent an email to a real estate agent that we have been working with to find a condominium for Erin close to her job. I told her about Ralph’s cancer. She replied that she didn’t think we would be able to find a place. 45 minutes later, she called me and told me about the place that Ralph had found and we all went over to look at the inside of it.

13528887_1139875149367242_320301026342634567_n

In a market so hot our real estate agent told us condominiums were getting 20 offers, God found us a condominium within 4 days of that prayer. On July 5th, Marie made an offer on a condominium in Kentwood, only two miles from the job that God provided for her a year and a half ago. At 6:30 the next morning, we received a call from the seller that her offer was accepted.

On August 11, Marie signed the mortgage papers for her own condominium.

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Then God also supplied the help that we needed tomove. Many from our church came to help us, sacrificing two Saturday mornings, one to help us move to the condo, and the second to clean out the house to get it ready to sell. Our backyard was a jungle.  The youth group came to cut down the brush and clean up the back yard.

What a testimony this has been to our neighbors and my coworkers. They say they were amazed at how this all happened so quickly.

I sat in church the Sunday morning after we moved, thinking about what God had done. It was stunning. God’s hand was clearly evident in all of this. Praising God through the tears.

Ann and Ralph.

 

 

The Family Hero

21 Sunday Jun 2015

Posted by Ann Kilter in Autism

≈ 4 Comments

Tags

asperger's, autism, faith, family hero, father, father's day, fatherhood

For Father’s Day

OLYMPUS DIGITAL CAMERA

Ralph, my husband and father of our children, is an unsung hero. Well, today I am writing his song of praise.

When Ralph became a father 26 years ago, he took on the challenge with aching, joyful love and trepidation. Three months after Mary was born, I went back to work at a bookstore. I came home one evening to find him sitting on the couch, white as a sheet. It was his first experience with an evening of full blown colic. Mary had screamed for three hours before she calmed down. After seeing the doctor to find out why she was screaming, he found ways to comfort her. He walked her outside back and forth for hours, while singing the song he made up for her.

Nighty-night time

Nighty-night time

Nighty-night time for my Mary

Nighty-night

Sleepy tight

I lo-ove you.

He was the one who developed a bedtime routine for our kids…bath, a story,  nighty-night song and tuck-in. The kids would read stories with me during the day, but at bedtime, they wanted their Daddy. For Ralph, they would settle down and go to sleep.

Ralph supported breast feeding by helping out around the house. He cooked dinner. He distracted the older one(s). He wanted to do what he could to ensure that our kids got the best start in life.  Without his support, our kids would not have been breast fed, for about a year each.

He cleaned up after the kids when they were sick.

He got on the floor and played with them.

When Ralph came home from work, he wanted to hear about our day. He listens, intently.

When our kids were in the process of being placed in special education, he was heartbroken. He has learning disabilities, so he blamed himself. Before the initial IEPC for Will, he didn’t want to go because, “I don’t want to hear what they say is wrong with my little boy.” He went anyway.

He worked to understand autism after we received the diagnosis. He encouraged me to go to conferences and workshops to learn more about autism so that we could help our kids. He helped with at-home therapy. He told me over and over how he appreciated the work I was doing with the kids.

When I told him that understanding humor, and differentiating between kind teasing and malicious teasing is difficult for people with autism, he used his joking and story telling talents to help them…for years.

He adjusted his work schedule so that he could pick them up after school or take them to appointments when I went back to school, and when I started working full time. For the last 12 years, he has been getting up at 3:00 a.m., so that he is available after 3:00 p.m.

He models faith. He shows his love by talking to them and playing games with them. We are a close family and Ralph is the anchor.

He has gone to nearly every one of Will’s concerts and band competitions. He took Patty to her art competitions.

He used his vacation time to be with the kids over Christmas break. He used his vacation to go with Will to band camp for three years, to go on youth retreats and spring break mission trips with Mary, Will, and Patty.

He has worked to support his kids even in the face of daunting health problems. His medication for his blood disorder makes him so tired. For two years, he had an very painful ulcer on his leg. He went to work anyway, to support his family.

When our kids went to college, he picked them up, and found additional opportunity to talk to them and influence their souls.

Now the kids are stepping toward independence, their own lives. Will left home and Ralph has worried and ached for him. Ralph put together furniture for Will. He taught Will his favorite recipes.

Will called Ralph for advice. Last week, he called Ralph to find out how to cook meatballs.

Ralph often praises me. He, however, is the family hero.

(This was published in Halo Magazine)

Life on a Tether

21 Saturday Feb 2015

Posted by Ann Kilter in Autism

≈ 9 Comments

Tags

asperger's syndrome, autism, faith, life on a tether, thrombocythemia

“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)

tether

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.

Nightspren

17 Thursday Jul 2014

Posted by Ann Kilter in faith

≈ 5 Comments

Tags

asperger's, autism, Corrie ten Boom, faith, Nightspren, prayer, worry

At the behest of my daughter, Patty, I have been reading The Way of Kings by Brandon Sanderson. There is a type of creature, sort of, which appears when certain processes occur, both emotional and physical. Sort of a mix between spirits and vibes. So there are angerspren, painspren, gloryspren, deathspren. Lately, I’ve been plagued by Nightspren or maybe worryspren. I suppose you could attach any worry or concern or difficulty or even achievement to “spren.” Sort of a superstitious way of looking at the world. Or possibly a description similar to the idea of giving off a vibe.

Like many parents of kids with autism, I am sometimes awakened in the middle of the night with concerns. Patty says, “Why don’t you call it what it is, Mom. Just plain worry.” She is right of course, no matter how much I try to euphemize it. I think I must give off a vibe. Sometimes, when I am intensely concerned about something, Ralph will walk in from another room and say, “What? What’s going on?” I didn’t say anything. He couldn’t even see me. Sometimes he’ll call me…at work. “Did you call me?” he’ll say. “No, but I was thinking about you intensely.” A kind of telepathy. Perhaps spren is just another idea for processes in the world that we can’t see and don’t understand. Only in The Way of Kings, Sanderson’s characters can see them.

So in the middle of the night, I am pestered by small and large worries:

Mary will be starting training for a job at a computer help desk in 10 days. We hope that she will be able to learn computer language, but what if she can’t? Her spelling is terrible, although she has learned how to use tools available in Microsoft and other programs (like WP) to assist her. What if she gets through the program, but doesn’t pass the certification test? What if she passes everything, but doesn’t get hired for the job? What if she gets the job, but can’t handle the help-line calls? What if my car breaks down? Or the hours mean I can’t drive her back and forth and she has to take the bus? What if the bus doesn’t come in time? And you can see how this goes, round and round my mind goes, racing faster and faster.

And then I think about Patty, and Will, and my job, Ralph’s job, finances, health, war, famine, and pestilence, etc.

From both a physical and spiritual standpoint, I need to stop this; turn it off.

Physically, I have bipolar disorder, and I can’t tolerate sleepless nights for long without having an episode. Sleepless nights also affect my ability to function during the day. Physically, I can quit tossing and turning and get up out of bed, eat something, read a book, clean something that has been bugging me, take pain meds if pain is issue, get a warmer blanket, or find a way to distract myself (usually, the history channel) and then go back to bed.

Spiritually, worry chips away at my faith, my confidence, my strength. Corrie ten Boom, a Christian who survived the death camps during the holocaust, commented, “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” I’ve been awake since 3:00 a.m. (one of many early wakings in the last several weeks). Spiritually, St. Peter encourages us to cast our cares upon the Lord, for he cares for you. (I Peter 5:7). If something is waking me up in the middle of the night, it is an opportunity to bring it to the Lord in prayer.

Sometimes if something is waking me up in the middle of the night, it may be time to repent or make a change in our lives. At times, my night time struggles have caused me to own up to going the wrong way in my life (to break up with a boyfriend). Or sometimes, a night time awakening has led me to make a change (Instead of going back to school to become a teacher, I became a legal secretary).

Sleep deprived nights can occur due to circumstances beyond our control. Then what? One of my Sunday School teachers, Ken, was in a wheelchair and on oxygen. He was often in the hospital for extended periods of time. One Sunday when he was able to make it to our class, he said, “When I am in the hospital and can’t sleep due to the pain, I pray for each one of you by name in the watches of the night.” I miss him. Sometimes I have found that when I pray for others in the watches of the night, sleep does come. Not always.

King David from the Old Testament was troubled, yet spiritually sensitive to God. He spent many sleepless nights, sometimes due to his own failures. Yet he wrote of his struggles with sleep in Psalm 63.

On my bed I remember you;
    I think of you through the watches of the night.
7 Because you are my help,
    I sing in the shadow of your wings.
8 I cling to you;
    your right hand upholds me. Psalm 63:6-8

night_sky_hd

What do you find helps when you are pestered with sleepless nights?

Giving Thanks versus Being Thankful

21 Saturday Dec 2013

Posted by Ann Kilter in Asperger's syndrome, Autism, diagnosis, Disability, faith, Miracles

≈ 2 Comments

Tags

faith, give thanks, joni earekson tada, thankfulness

“AS a matter of fact, God isn’t asking you to be thankful. He’s asking you to give thanks. There’s a big difference. One response involves emotions, the other your choices, your decisions about a situation, your intent, your ‘step of faith.”
― Joni Eareckson Tada, A Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God’s Sovereignty

Joni is one of the world’s longest surviving quadriplegics. She has been in her wheelchair since 1967, when she had a diving accident as a teenager. Despite this, or maybe because of this, God has used this event in her life to bless millions of people. Her paintings, her books, and her ministry to provide wheelchairs around the world to disabled people are just a few of the ways God has used her to bless the lives of others.

http://www.joniandfriends.org/jonis-corner/

I have read her devotional, Diamonds in the Dust, over and over since the 1990s. It has been a rich source of encouragement and faith building challenge.

Shortly after Will was diagnosed with autism, I wrote a letter to her regarding one of my favorite passages from the Bible, I Thessalonians 5:16-18*, which she read on the air during one of her radio broadcasts in the early 1990s.

Giving thanks is an act of faith.

Don’t beat yourself up because you don’t feel thankful.

20 “for whenever our heart condemns us, God is greater than our heart, and he knows everything.” I John 3:20.

He knows our struggles, he knows that we are dust. Jesus says, “28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”” Matthew 11:28-30.

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*(16 Rejoice always, 17 pray without ceasing, 18 give thanks in all circumstances; for this is the will of God in Christ Jesus for you.)

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