themighty logo

How I'm Moving Past the 'Continuous Cycle of Grief' as a Special Needs Parent

There wasn’t a cloud in the sky, the pool was the perfect temperature and we laughed as our daughter pretended to be Peter Pan while making a running jump into the water. It was a dreamy start to July 4th — one of my favorite days of the year.

That’s why it caught me so off guard.

As we got out of the pool, a slow country song filled the hot, dry, Arizona air. I wrapped my son, Anderson, in a towel, held him against my chest and swayed to the music. That’s when the tears started. My husband was startled. “What’s wrong? What’s wrong?”

“What if I never get to dance with him at his wedding?” I said.

Most days, I nearly forget Anderson has Down syndrome. But these sad, fear-filled moments creep up from time to time. It’s what Anderson’s physical therapist referred to as special needs parents’ “continuous cycle of grief.”

I mostly write about how Down syndrome has impacted our lives in a profoundly positive way, because it has. But this pop-up heartache — it’s real.

It catches me in the more obvious times — when I’m waiting for Anderson to check off that next milestone. It comes in the quiet moments inside my car. And sometimes it comes when I’m least expecting it — on a picture perfect holiday afternoon.

The truth is none of us know what the future will hold for any of our children. I know that. But, when your child has a disability, the struggles are more of a guarantee. I know many things will be more difficult for Anderson, because they already are.

Don’t misunderstand my words. My hopes and expectations for Anderson are sky-high. I won’t put limits on him and I’ll try my best in his younger years to get others to extend him the same courtesy. But I do know his diagnosis will make certain aspects of his life more challenging — and when I look at my sweet, loving little boy, knowing that can feel heavy at times.

I take comfort in the fact that no one can fulfill Anderson’s purpose in this life other than Anderson. I take comfort in the fact that Anderson would not be Anderson without Down syndrome. I take comfort in knowing that these struggles he will face will shape him into the man he is meant to become.

So, when this short-lived pain seems to randomly take over my heart, I will squeeze my toddler tight, let the tears trickle down and admit that sometimes being a special needs parent is hard. But then I will remember to smile, because these moments are only so difficult because the love I have for him is so deep.

Follow this journey on News Anchor to Homemaker.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.