Of course not, you may have thought to yourself after reading the title of this post. My special needs mom worries never end either.
But there’s a difference between your special needs mom worries and mine. You are most likely either raising a child with special needs under the age of 18 or caring for an adult child with special needs. In either case, you deal with a host of legitimate concerns every day.
I, on the other hand, do not. My son was born with a rare condition known as esophageal atresia with tracheoesophageal fistula (EA/TEF). I had plenty to worry about during his first 4 years until a series of surgeries and procedures fixed what ailed him. Many children born with EA/TEFhave other physical disabilities or developmental delays. Our son does not. He’s a college graduate with a job, wife, a family, and a farm. Did I mention he was born in 1982, which makes him 36 at the time this post was written? Even so, my special needs mom worries never end. Here’s a frank look at what I worry about.
Esophageal cancer. People with EA/TEF often have re-occuring issues with gastroesophageal reflux disease (GERD), a condition that can lead to esophageal cancer. I combat this reality by thanking God for the years our son has lived, when in another day and age he would have died at birth.
Lack of knowledge of the details of his medical history. Our son had 7 surgeries between birth and age 4. My husband and I remember all the details, but our son doesn’t, and I used to obsess about his ability to relate that history when we are gone. To stop that worry in its tracks, I wrote a narrative of his early medical history and gave it to him, along with the paper medical file from his early years.
My failure to treat him as an intelligent adult. I can’t be the only mom of a child with special needs who fails in this department. After 18 years of advocating with health care professionals on his behalf, my default mode is to protect my baby, to fight for my baby, to defend my baby. Except he’s not a baby. He’s a man, and I worry that my knee jerk reaction will push him away. To combat this worry I think about how I treat my co-workers who are his age and treat him with the same respect.
Unforeseen complications as he ages. Our son is a member of the first generation of EA/TEF patients who survived in great numbers. Sometimes I worry that as their generation lives longer than previous ones, unforeseen and unexpected complications will arise. When that worry rears its ugly head, I use the strategy described in #1.
My special needs mom worries will never end. Partly because the lives of moms of kids with special needs and disabilities are a constant stream of complications and partly because all moms worry. I’m pretty sure Mary worried about Jesus. He never gave her reason to worry, though Simeon’s prophecy in Luke 2:34 certainly did.
Like Mary, we can nip our special needs mom worries in the bud by entrusting our children to the God who created them and by focusing on His attributes, what He has done for us, and what He has promised to do.
My soul magnifies the Lord,
and my spirit rejoices in God my Savior…
for He who is mighty has done great things for me,
and holy is His name.
Luke 1:46–49
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She is working with Dr. Gary Chapman on a book about using the five love languages in special needs families will be released in August of 2019.
