“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)
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.
Prayers for safe moving and continue inside gut and contentment as you journey on. Barbara and I totally get the tether in our house of adoption. Peace.
Ann Kilter said:
Thank you. This is our calling, I think.
Lilka Raphael said:
This really spoke to me today.
You have done so well with your kids, continually supporting them on their journey toward independence, graduating, finding jobs. Homes of their own.
My prayers are with you. You have managed much and are a ray of light to those of us not as far along on our journey as you. Peace, healing and wisdom to you.
So happy I found your blog and this post. My early educational experience was with children who have autism. What I learned inspires me in my middle school classroom daily. It also helps me to understand my three adult cousins and empathize with my aunt and uncle who are also “tethered.” This week it is helping me make peace with the diagnosis of dyslexia given to my own child. God gives us each our own journey, but it helps so much to know that we are not truly alone when we agree to take it on…
I was blessed by this post and encouraged by your strength. Thank you for sharing….God bless.
Me also. I did not even have any children with any thing like this and I had discontentment sometimes. My situation was I never had any money to go somewhere even though I could have otherwise.
the jay train said:
I’m so proud of all your children and all they have accomplished with your help and support. I hope Ralph continues to find relief and you as well. I think of you all often when I am praying.
Tethered- perfect. We have shade of that here too. Thanks for sharing!
Thank you for being such an inspiration. We are at the point of making a plan for what each of our boys will do once they leave high school. We live tethered to their care and their futures. You give me hope, something I need so much.