The Continuous Cycle Of Grief For Special Needs Parents

When your child has a disability, the struggles are more of a guarantee.
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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 4—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 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—thinking about how my friends just joked about their children dating each other one day, knowing Anderson will not be apart of that inside jest. 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 him are sky- high. I won’t put limits on him and I’ll try my best in his younger years to get people 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.