Moving Through Grief as a Dad of a Son With a Disability


The warm glow of the morning sun makes the cool southwest breeze even more refreshing.

It’s the same breeze that helps craft the clean waves crashing at the shoreline — consuming my gaze and quieting my thoughts.

The morning surf-check is one of life’s delicacies. A day of clean waves is nothing short of a gift from God.

As the saying goes: “If you’re lucky enough to live near the sea, you’re lucky enough.”

Unfortunately, the clean lines that surfers crave do not always march to shore. When the variables — wind, swell, tides, etc. — are not aligned, those clean lines become a mass of confusion; some days, hours, minutes more threatening than others.

Those messy, threatening days do not dilute the fortune of living by the sea. The stormy moments offer a richness that would be lost if every day was nothing but clean lines.

However, the richness of the variable sea does present challenges. Storms that must be endured, winds that force you to bear down tight.

And when the storm passes, clean lines and salt water cures among the floating debris.

I have done my best to engineer a life that offers the fortune of family life by the sea — embracing the clean lines, storms, and post-storm cleanse. A life rich with rewards.

Similar to the rogue wave or sudden storm, life’s engineering does not always match the forecast.

This is much like our journey parenting a child with a disability.

As this journey continues, the richness matches the beauty of the sea — unfolding in calm breezes, clean waves and favorable tides. And unexpected storms.

I am no expert in grief, but for me, disability implies missed expectations. And missed expectations imply grief.

I avoid the idea of grief. Playing the part of internet psychologist, my guess is I avoid the idea of grief to fulfill my self-defined model of “strength” and in an effort to ignore the storms.

How’s that working?

 

Unfortunately, as any surf forecaster will tell you, ignoring the storm does not change the foreboding path. Storms will arrive. And patterns will repeat.

There is a cycle of grief. And this cycle repeats.

Despite my best intentions to change the unchangeable, I recognize this cycle because we experience the raw emotions — on repeat.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

We work through this grief cycle individually and as a family. We manage this cycle as best we can, and I’d like to believe we are improving with each repetition.

We yearn towards the clean lines of acceptance, and we revel in the warm sun and cool breeze of our strong, loving family. The majority of our time is spent enjoying the amazing waves of love and happiness that parents of kids with disabilities know.

But we need to be mindful of the forecast. We don’t know when the storms will blow through, and we don’t know how hard we will need to bear down to remain grounded, but be prepared.

The storm may hit you, your spouse or your kids at varying times with varying intensity. We are all unique and life is unexpected, but we are also the support group that endures through difficult storms.

It’s amazing what a well-timed hug or a good cry can do. We will help each other reach that post-storm cleanse.

The salty tears always lead to clean lines.

Stay open. Love with all you have.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by plusphoto/amanaimagesRF

TOPICS
,
JOIN THE CONVERSATION

Related to SATB2-Associated Syndrome

young daughter kissing her mother on the cheek

What I Wish I Knew When My Daughter Was Diagnosed With SATB2 Syndrome

It was my sixth time calling the doctor’s office that day. I knew he must have the results from my daughter’s genetic test, but he had been dragging his feet getting it to me, and my impatience was getting the best of me. Didn’t he understand that this one piece of paper was about to [...]
mother holding son

Why I’m No Longer Scared to Be a Special Needs Parent

I’ve been putting this off for months. What do I share? How much? When? Do I even want to? What will people say or think? Am I putting my son, Mack, at risk to be judged as soon as someone sees his photo, let alone meets him in person? We received a call the same [...]

ABL Denim Creates Sensory-Friendly Jeans for Kids With Autism

When Stephanie Alves launched ABL Denim in 2011, the goal was to create a pair of inclusive jeans that would be comfortable enough for people with disabilities, specifically those using wheelchairs, to wear. Now, ABL Denim has expanded its line for children with sensory processing disorders. “Parents kept asking if we made a jean for kids [...]

She’s 28, Lives With Williams Syndrome and Has Her Own Successful Business

Jenny Unrein lives with Williams Syndrome and also runs a successful business selling paintings, greeting cards, mugs, jewelry and more all over the world. Read the full story.