Potential

When our oldest daughter was born, we looked forward to what she would become. She had so much potential.

Teacher. Scientist. Fire Fighter. Business woman. Doctor. Lawyer. Engineer. Mechanic. Nurse. Caregiver. Hero. Writer. Leader.

We were filled with dreams, wishes, and hopes for her. But then we began to notice differences in her development. She didn’t speak, walk, move, or connect as well as the other children in our lives – her siblings, cousins, classmates. We listened in secret pain as our friends and siblings crowed about the achievements of their little Einsteins and future athletes. She walked late, talked late, and reacted in strange ways to the events around her.

Because of our concern, we had her evaluated multiple times and we finally received the diagnosis of autism, learning disabilities, and brain injury at birth.

In the necessarily clear-eyed and realistic assessment of her needs, we had to focus on her challenges; the features that differentiated her from normal kids. Knowledge, even if painful, was required in order to provide what she needed. We traveled the road less traveled of speech and occupational therapy, IEP meetings, more evaluations, and support groups.

In the process, it was easy to lose sight of her potential.

It was easy to forget that she was created in the image of God for a purpose.

“For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.” Ephesians 2:10, NIV

She was created, just as we are, to do the good works which God prepared in advance for her to do. So our daughter went on a spring break mission trip and painted windows at a camp in Tennessee with the high school youth group. After college she volunteered at a homeless shelter in the accounting department for over a year. She is kind and considers the needs of others.

Not only has she performed good works herself; but good works have also been generated in those around her. Kindness has been extended. Help has been offered and accepted. Many good works were done behalf of our family, which God prepared in advance for others to perform.

She is God’s handiwork…the art of creation poured has been poured out in her life.

This is true of all children. They also have also been created in the image of God to do good works as they blossom forth into the world.

Ten Things I wish Were True

1) Every child with a disability who is entitled by law to receive a free and appropriate public education (FAPE), receives one. This was not true when I was raising my kids. I heard stories at conferences, at advisory committees, legislative comment sessions, and on the internet. In this era of public school destruction, I fear the situation is even worse. Federal Law mandates FAPE, but with the reduction in funding and the systematic destruction of our public schools due to corporate interference, I’m afraid FAPE is much more likely to be denied.

2) “Your kids will always have a job because of their disability.” The person who said this to me felt that her kids (brilliant) were at a disadvantage because they didn’t have special job protection under the law (discrimination protected status supposedly given to special classes of individuals due to race, disability, and sex). The unemployment rate of people with autism is above 50%. My oldest daughter diligently searched for full time employment for four years after graduation from college.

3) I wish the liquid asset limit for SSI was raised. The amount for an individual is still at $2,000 and for a couple it is $3,000. This is not enough money to save to move to an apartment, or for emergencies that may come up, such as a major car or home repair.

4) Every parent of a child with disabilities had a mentor, a coach, a village of helpers.

5) There was a cure for children with autism who have major impairments.

6) Employers would give high functioning adults a chance. And if the first or second person doesn’t work out, keep giving a chance to someone else until they find the one who fits. I know this is asking a lot.

7) Those who look down on our parenting skills would spend a day in an autism parenting immersion experience.

8) Immunizations really did cause autism. Then autism could be eradicated within a generation. Instead there are worse things which can be attributed to a lack of vaccines, such as infant death by whooping cough, death by lockjaw, heart disease caused by measles (my mother), etc. The causes of autism appear to be numerous.

9) Every person with autism would have a circle of friends. In high school.

10) Every family affected by autism would have a fabulous vacation at some point in the journey.

How about you? What would be on your wish list?




Prepare the Way

“Only 5 to 10 percent of the world’s disabled are effectively reached with the Gospel, making the disability community one of the largest unreached – some say under-reached – hidden people Groups in the world.” – Joni Eareckson Tada.

A few years ago, we moved to another area of Grand Rapids, Michigan, from our house to a condo due to my husband’s cancer diagnosis. It was the final straw in a series of health issues which had made it difficult to maintain our house. The condo was also much closer to our daughter’s job. Our daughter cannot drive due to her disability. A bus ride to her job from our previous home took at least an hour. From the condo, it is about 15 minutes, although we do drive her to her job at this point.

As a result of our move, our former church was now a 45 minute drive one way. This was tiring for my husband, and it made attending church activities in addition to the Sunday morning service more difficult. After about a year, we decided to look for a church that was closer to our condo. We found Forest Hills Baptist Church about six miles away. Coincidentally, when we were first married, we attended Bethany Bible Church. Forest Hills Baptist Church occupies the same building. Bethany Bible Church was dissolved in 1992 and the building had been occupied by other congregations, but not very successfully. Forest Hills Baptist Church purchased the building about 10 years ago. In our search for a new church home, I drove by the building and noticed a lot of cars in the parking lot. So we decided to try it out.

I sent an email to the church office asking for more information and telling them a little bit about our family. For us, at previous churches, it had always been a good idea to prepare the way for our family. At our former church, we contacted the church ahead of time for our oldest daughter who had special needs growing up. She was severely learning disabled along with having some fine and gross motor skill deficits. When she was nine, she was also diagnosed as being on the autistic spectrum. One of our main concerns was her safety. Would she be able to navigate the stairs? Would her teachers know that in an emergency, they needed to grab her hand and help her navigate, even though she was twelve years old. Would they avoid asking her to read verses out loud? Our efforts at preparing her teachers and leaders in youth activities were mostly successful, but occasionally not so much. I’m sure we were sometimes viewed as too concerned about her. We had previously changed churches twice due to safety issues for our daughter.

When we started attending Forest Hills Baptist Church, we discovered that they had a heart for fostering and adopting children, many of them with special needs, some of them in wheelchairs. And they were in the midst of a campaign to raise funds to make the church building more accessible. The congregation was actively seeking to minister to the needs of those with mobility challenges by building a foyer (bridge) between their two buildings in order to add an elevator and a ramp.

We were so encouraged by this gospel focus on those with disabilities. Forest Hills Baptist is not a large church, yet the members are giving sacrificially to make changes in their facility to meet the needs of those with disabilities.

From our own experience and from the stories we’ve heard from other families in our situation, we know that every time a family with a disabled family member walks into a church, they carry an extra burden. Before they will have heard a word of that church’s gospel message, they will have scouted out possible barriers for their family member. A friendly, “welcome to our church!” rings hollow if the family has a difficult time navigating the facilities and taking part in the same activities as everyone else.

In addition, previously able church members may become disabled, temporarily or permanently, due to illness or injury. An elevator would also help those who become disabled due to natural aging. Being unable to navigate the building often causes withdrawal from the life of the church and may impede healing.

After two years of planning and raising funds, the church has begun the physical changes necessary to add the elevator and ramp to prepare the way for those with disabilities. It is so wonderful to see this come to fruition.


April 2019 – the vision is becoming reality. This picture was taken by Ms. Kennedy

And In Other News…

1.8 million dollars was raised in less than 36 hours via GoFundMe for the three historically black churches which were burned down in Louisiana by a white supremacist.

The Rebuilding of the Cathedral of Notre Dame was fully funded in less than a week.

Forest Hills Baptist Church began construction which will join the two sections of their facility and include an elevator and a ramp in order to serve the needs of those with mobility challenges. More about that later…

Books I am reading

Before We Were Yours by Lisa Wingate

Fiction based in an awful historical reality – what happened when children were placed the Memphis Tennessee Children’s Home. I’m not too far into this book. It has been recommended by many of my friends.

The Color of Compromise by Jemar Tisby.

The tag line – The truth about the American Church’s complicity in racism. Tisby is an historian. So far, I’ve learned the about the early laws passed to make sure that the Africans and indigenous tribes already here would not have the same rights as white men. From the founding of our country.

Also, that originally, slave owners did not want the Africans to be evangelized because they might get ideas about liberation. The evangelists were allowed to evangelize only if they stressed that liberation for the Africans was in the spiritual sense only.

I am reading this book because the first step to understanding is to listen.

First Born by Tosca Lee

This is the second in the duology (sounds fancier than 2-part) of the House of Bathory. A fast moving thriller. I’m not usually a fan of thrillers, and I object to the wanton destruction of so many cell phones, but this has me hooked. I read the first volume (Progeny) very quickly.

Disruptive Witness by Alan Noble

The tag line – Speaking Truth in a Distracted Age. This is so convicting. Believers are so distracted by our devices, and so is everyone else.

That’s all for now. This post will be updated as I meander through these books. I have stacks of others to get through. How can I read so many at a time. Well, I’m easily distractible. Unofficially somewhat ADHD (according to my doctor). That’s why my foot taps so much in church. 🙂

On Reading Well by Karen Swallow Prior

The Tag line – Finding the Good Life through Great Books. Ms. Prior is an English Professor at Liberty University. She covers the virtues which are demonstrated through great books. This book doesn’t require straight reading. Rather, she encourages the reader to go through and pick the chapters they want to read in no particular order.

That’s really it, for now. I will revisit this post from time to time.

Provision

On June 10, 2016, Rick 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 myleodysplastic syndrome 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. Rafters I could not reach. 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 Rick that he could take some money out of his 401(k) to help our daughter 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 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?”

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

A few minutes later, I heard “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 had been working with to find a condominium for Erin close to her job. I told her about Rick’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 Rick had found and we all went over to look at the inside of it.

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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, Erin made an offer on a condominium in Kentwood, only two miles from the job that God had 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, Erin signed the mortgage papers for her own condominium.

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Then God also supplied the help that we needed to move. Many from our church came to help us along with my Uncle Bill, my brother and my nephew, and our son; some of them sacrificed 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 was to those around us. They said 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.

A Hodgepodge

“Still round the corner there may wait, A new road or a secret gate. ” J.R.R. Tolkien.

I’m not really sure what this blog will turn into. A platform for fiction. A place for meanderings. A place to vent. A place for spiritual realizations. I may branch off with separate sub blogs for the venting. Or not. Book reviews.

Facebook is too casual. Twitter too short. But perhaps here I can do some long-form writing and also some long form reading. It helps to both calm and stretch the mind. Twitter is for sound bites (and I guess longer threads).

So this is a start. Or rather, a restart. I’ve had a blog under a pseudonym. I had 150+ blog posts and about 600 followers. I’m not sure what I am going to do with that work. But here I am going to start and see where this leads me.