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Tell Me Your Story—Widowed With a Disabled Child

DSC_3703_2Dear Readers,

I am happy to introduce Alicia Schick to you—the challenges she has overcome are astounding. This lady has spunk! Not only does she care for her son and husband, but she also provides care for individuals in her home from time to time who are either recovering from surgery and have nowhere to go or who are terminally ill. She is one of the founders of First Baptist’s Aging to Perfection program.

If you have a friend or acquaintance who is a caregiver, be sure to use the “Email this post” button to forward her story.

Ruth Wood is the columnist for Tell Me Your Story. Do you have a dramatic or unique story that would encourage others in their walk with the Lord? Send an email to Ruth with subject line “query” and include a paragraph summarizing your story to ruthywood@gmail.com.

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You are currently caring for a ninety-two-year-old-husband, who was diagnosed with dementia in January of 2010 and had a stroke in October of 2010, and a grown son who has cerebral palsy. It’s astounding how you carry such heavy responsibilities as a woman in her early seventies. Would you give us a brief history of your life?

I came from a large, poor family, and it fell to me to care for younger siblings. The poverty and lack of opportunities in my small town felt stifling, and I wanted out. I was the first in my family to graduate from high school and did not even wait until the next day to leave; that very night I boarded the 11:00pm bus bound for San Francisco. From there I took a Pan American flight to Japan to be with my fiance who was career Navy and we were married. I was only seventeen.

You later returned to the States. What happened then?

We were married almost five years when I gave birth to our son while my husband was on assignment for six months. The baby was born premature, and so my husband came home to be with us. Enroute to his next assignment, he was killed by a drunk driver. I was now a widow at twenty-two with a newborn only four months old.

That must have been extremely devastating. How did you go on?

I was extremely angry. The drunk had a history of driving under the influence and had a suspended license. His sentence was only thirty days in jail. I wanted an apology but never heard a word from him. I hated him so much. I wanted to go to Redding, where I knew he lived, and kill him. I had grown up on a farm and knew I was a good shot. The fact that alcoholism was rampant in my family only fueled my prejudice and hatred against this man who had ruined my life. It was a long process of coming to terms with what happened. One day I realized God loved that man as much as me, and I was able to forgive.

When did you find out about your baby’s problems?

He simply didn’t thrive. Doctors were saying he was just slow, but I knew something was wrong and took him to a navy hospital for testing. That’s when he was diagnosed with cerebral palsy. He’s now forty-nine and has never walked.

Tell us about life as a young, single mom caring for a disabled child.

It meant poverty again. The two of us lived on $440 a month. This was in the 1960’s.  I was determined to work with this kid so  he’d be everything I wanted him to be,  so I set aside the next ten years and became his physical therapist, speech therapist, teacher, etc. Last of all, his mom.  I made him learn things even though each task took forever. He had horrible speech, but I worked tirelessly until he could speak so people could understand him. He learned to dress himself but didn’t master tying his shoes until he was nineteen.

Why was it difficult to relate as a Mom?

After he was born, my son was in ICU for about two months, and I was not allowed to hold him, so this prevented the normal bonding process. Also, he was not a cuddly, responsive kid; he was stiff and rigid. But someplace along the line I learned to love him.

You reached a crisis when you had to decide whether or not to keep up physical therapy to teach him to walk. Tell us a little about that.

In those ten years there was not a night he wasn’t crying because of how he had to be positioned—spread-eagled, in shoes and leg braces. He was not able to turn himself; I would have to do it. Doctors believed this position would best train his legs to eventually walk. For ten years my goal was to teach him to walk, but it wasn’t happening. I finally took him to a private physical therapist for an assessment, and he determined my son’s left side simply could not hold him up. That night we made a ceremony of taking off the braces, unscrewing all the parts and throwing them in the garbage. That night my son began sleeping peacefully through the night.

Early in your life raising a special needs son, what were your most difficult challenges?

It was extremely traumatic to have so needy a child, and I had a hard time accepting my circumstances. I had come from farm stock who could do anything. I was livid that I was put in this position. I did all the right things on the outside but on the inside I was angry. At the time I wasn’t looking at the situation from God’s point of view.

You said that heart is a key word to you today. Tell us about that.

Yes, I draw a red heart on any word with “heart” in it, i.e. heart broken, hard hearted, etc.   The Lord has taught me so much. Did you know if a surgeon has a heart ready for transplant, and he touches the old and the new hearts together, they will start beating in sync? After many years of an angry heart, I want my heart to be beating in agreement with God’s. That’s my prayer.

When did you become serious about your faith?

After being single for nineteen years I married a man twenty years older than me. About a year later I quit work and started going to Bible Study Fellowship. BSF trained me in godly discipline, obedience, and perseverance. When that five year program was completed I started studying with Precepts Ministry and have continued growing. As a habit I read through a chronological Bible every year.

What are some ways you’ve changed because of all you’ve been through?

Because of the stress I was under, I used to see people as terribly inconvenient and just causing more work. Today, I view people more like a Christmas gift and always ask God why He’s bringing that particular person into my life. I believe  everyone I meet is providentially appointed. There are no accidents. Not my son, no one. With this philosophy, when tough people come into my life, I am convinced God has a sovereign purpose.

You said some people asked, “What did you ever do to deserve a child like that?” How did you respond?

My answer was: If God had been punishing me for what I deserved, then my son should have been born with even worse disabilities.

As a senior care-giver to both a special needs son and a husband with dementia, how do you do it?

It’s a process. I do it knowing God loves them and He’s entrusted them to me. They are my assignment. When your spouse has dementia, you lose your husband and who he was.   This is hard.  Nowadays I love my son very much. I can’t imagine what empty nesting would be like, probably very lonely.

What is your perspective on life today?

After all I’ve been through, I’m not afraid anymore. I’ve seen God’s hand in many things, how can I fear today? I know He is in everything. I no longer fear losing my son, no longer fear dying first, no longer fear my husband’s dementia or stroke. The Lord says, “Oh, my child, I have your back; you simply need to trust M e.”

What advice do you have for other caregivers who struggle with the day-to-day responsibilities and burdens?

The 36-Hour Day, is a great resource for care-givers. I highly recommend this family guide to caring for persons and keep it on my coffee table for quick reference. You can purchase it (about ten dollars) at Barnes & Noble, Borders or wherever books can be ordered. Our doctor keeps a supply on hand to give to her patient families. She also calls us “A Team.” 

Advice? Recognize there is a limit. You can’t do everything. You can’t be everything to every body. People caring for others in a nursing home get to go home. But you are doing it 24/7, and no one can keep this up. You have to figure out, “What can I do, and how much help can I get here.” Learn what facilities are around, what’s available. Get everything in place as much as you can. Your will, your finances. Have plan B. Think ahead, do assessments. I’ve learned from those who have been successful and those who weren’t. When you’ve done everything you can, then you rest.

You have to grieve your losses. Identify and acknowledge them.

Humor is a survival skill.

Another key word for me is “through.” We are never in our current circumstances forever. In good times, enjoy life fully and know some challenging times are ahead. In hard times, take comfort knowing they won’t last forever.

And most of all, recognize you’re not in this alone. God is always with you.