Choosing acceptance and advocacy as parents of kids with disabilities takes time. Today’s guest blogger, who wishes to remain anonymous, talks about making that choice as a parent many years ago and using what she learned to assist parents of her students who are struggling to make that choice today.

There’s nothing to worry about.

This ordinary statement, from the lips of the pediatrician, a few hours after my daughter’s silent birth, cut my life into two halves.

Before, I was an unsuspecting mother to be with an I-can-handle-it approach to life. A happy-go-lucky Christian woman who somehow thought faith was a shield to protect her from the worst life has to offer.

But as I absorbed this statement, somehow, in my core I knew that this pediatrician was mistaken, and so was my worldview. There definitely was something to worry about. My precious daughter was fighting for her life, and I had better start fighting for it too.

The events that transpired are another long story, but in a nutshell, our daughter was correctly re-diagnosed with EA/TEF in another hospital. Then, at three days old, she underwent a successful repair operation.

We could finally breathe again.

However, her struggles did not disappear. The months and years after her birth saw her back in hospital again and again with alarming frequency, as she coped with pneumonia, chest infections, and food blockages. Meanwhile, she struggled to swallow on a daily basis. My preconceived ideas of family life were turned upside down and inside out as I just struggled to feed her and stagger from one round of antibiotics to the next.*

So that pediatrician’s statement had well and truly thrown me into the second, more sober half of my life. 

I don’t hold any hard feelings towards him. After that surgery, I went back to the first hospital to find him. I explained the diagnosis, I hope, kindly. He had not read my medical notes which stated I had polyhydramnios (too much amniotic fluid) during my pregnancy. I later learned this was a warning sign of EA/TEF.

Fast forward 19 years and here I am, an Early Years Teacher. Sometimes this job entails the unenviable task of conveying difficult messages to parents.

• Have you noticed anything unusual about your son’s development in comparison to that of his brother?
• Have you considered a hearing test?
• I would like to suggest you consider an assessment for your child.

These words, even when delivered with as much sensitivity as a teacher can muster, can be met with resistance and even anger. I have experienced more than once that, as the teacher, I can be the target of the anger.

I understand this.

Our daughter’s diagnosis meant that acceptance was thrust upon us in that moment. EA/TEF is a physical issue making swallowing impossible without surgery. Despite the challenges, we were able to move on towards coping with the situation by first accepting it. Other diagnoses can be more nuanced, more open to interpretation. Acceptance can sometimes be put off for a while.

Author Jocelyn Soriano says, “Acceptance is the shortest route to peace.”

• Accepting that your child might be neurodivergent.
• Accepting that your child might have extra physical challenges.
• Accepting that we sometimes need, as Jolene has shown us, a different dream for our child.

Professionals might not always be sensitive or even right. But some of us do know the weight of our words. We know they have the power to cut a life into two halves. We do not speak for the fun of it. We speak out of necessity and in the best cases, with compassion.

These words are an uncomfortable but essential invitation to acceptance. 

So, if you are struggling with something a doctor or teacher has told you, don’t waste time or energy focusing on what the professional said or did. Choosing acceptance and advocacy as parents of kids with disabilities will help your family move forward. Your child needs your focus and energy to be on them. So be courageous. Find out the truth, accept it, and fight for your child.

*Everyone’s journey is different, but for us, life didn’t stay in that dark place forever. With the help of Christian friends and family, we slowly came through it. We are thankful that now our daughter is now an independent woman who lives a full life and can’t remember the last time she was on antibiotics.

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Photo by Bekah Russom on Unsplash