This is a picture rich with story. My mother asked my aunt Dutch to tell her how much she spent on cigarettes every week. My mother put that much money away for a year. She took that money and bought this great big tent. Behind me. She told me this weekend that they set this tent up underneath the tree. And it was very hard to set up. They tied the top of the tent to tree limbs above to keep it standing..
This is what I remember:
We camped in a farmer’s field next to the thornapple River. No electricity. no water hookup. Primitive camping. It was my mom and dad and my two brothers and my sister and me. My mom cooked everything on a campfire. It was a lot of work.
We had a borrowed boat and we all went fishing in the thornapple River. I remember my brother Mark catching a big fish. It was a lot of fun. The fish in this picture were mostly suckers. We ate them and they were delicious. My mom was a good cook. A very good cook
During one of the nights we were there, there was a very severe thunderstorm. I remember the loud thunder and the wind buffeting the tent. Looking up, I could see the flashes of lightning through the openings in the tent. I also remember the water seeping through the tent floor. Our sleeping bags got soaked. We hung them out to dry the next day.
Mom said this weekend then if she hadn’t tied the tent to the tree limbs above, it would have come down. (I think it’s probably very dangerous to do that during a severe thunderstorm.)
I don’t remember this picture being taken. But I apparently wasn’t too thrilled about holding that line of fish. I also wonder if this was the only picture they took during this camping trip.
“Downsizing in the next few years is a precious gift Rick and I can give to our children.”
I wrote that statement in March 2014. Before Rick became disabled in October of that year. Before he was diagnosed with cancer in 2016.
At the time, my parents were in the process of moving back to our state from Florida to live with my brother. A trailer of their possessions had come up north with my mother in November. My siblings flew down to Florida to help my father pack their remaining stuff into a moving truck, and drive back here with him. My parents already had had three yard sales to reduce moving expenses.
We had spent so much effort thinking about our children’s future that we had forgotten to plan for our future as our lives were winding down. The thought of them being faced with what to do with our earthly possessions was deeply disturbing. I imagine them bewildered. The fact that our oldest daughter is on the autistic spectrum complicated the situation. Better to give it away before then, I thought, while we still have the strength and will.
Our old house was 1600 square feet, 2400 square feet if we counted the mostly unfinished basement. We were not hoarders, but we had accumulated a lot of stuff over the 21 years in that house, 31 years as a married couple. Our house had a lot of built in storage and extra little rooms. Putting something away and forgetting about it was the path of least resistance. Still, when I thought about cleaning it out and getting rid of what we no longer used, it felt like a huge mountain I couldn’t climb. I sometimes felt a sense of despair.
I kept putting off “now.” I was too busy. Life got in the way. My job, my children, and my husband took up the available energy.
However, when Rick was diagnosed with cancer in June 2016 and the doctors set him up to be evaluated for a bone marrow transplant, the need to make a change became urgent. We could no longer take care of our house. In fact, due to his disability, and the earlier all out effort to get our kids through college, our house was in poor condition. Neglected. Run down. A hundred year old house with an open grey water drain in the basement was no place for a man about to be severely immune compromised by a bone marrow transplant. That was what I thought at the time.
“What am I going to do?” I prayed while doing the laundry in the basement shortly after the diagnosis. I think God heard that prayer.
A week later, we were looking at a condominium in Kentwood. Two bedrooms, plus an extra room off the living room. 1,338 square feet. Our oldest daughter bought it and signed the mortgage papers five weeks later. People from our church and some in our extended family helped us move. We rented a large dumpster, and they helped us throw away over half of the stuff we had accumulated in 31 years of marriage. What had seemed like a mountain was whittled down with the help of friends and family. They threw away the accumulation. We gave away the rest. It was such a relief.
God uses even the hard things in our life to bless us. I often look back at the hard places in our lives and see that time as a time of great blessing, even though it was very stressful at the time. God is faithful.
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.
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.
“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.
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…
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.