themighty logo

When Grief Over a Diagnosis Sneaks Up on You

When we got the diagnosis in January, I’d felt a huge sense of relief. We finally had answers to our many questions. We were certain of what I’d felt in my heart for a long time — my son, Jackson had childhood apraxia of speech.

With diagnoses in hand, I set out to educate myself and others. I hit the ground running to make sure we were doing everything we possibly could for Jackson.

What I didn’t do was grieve.

Last week, the sadness and uncertainty nearly pulled me under. Somewhere between learning we needed to get an occupational therapy evaluation, realizing it’s highly likely that Jackson has sensory processing disorder and battling the school district to meet his needs, the grief found me.

So I fell apart in the shower. I let the water muffle the sound of my sobs.

At 2:00 a.m., silent tears hit my pillow. Jackson wasn’t feeling well, and it killed me that he couldn’t tell me what was wrong.

I sat in my car and cried in the parking lot outside the doctor’s office but quickly pulled myself together before my appointment. The doctor walked in and her first words were, “That little boy of yours is so lucky to have you as his mama!”

And I fell apart again — right there on the exam table — while my doctor hugged me.

Grief found me last week.

I grieved for the little boy who wants so desperately to talk.

I grieved because we have a long, hard road ahead.

I grieved because my 3-year-old should be signing up to play soccer or participating in activities with other kids.

I grieved because being the parent of a child with special needs is hard.

I grieved because few people truly understand what we face on a daily basis.

The week leading up to Easter was filled with tears and sadness. I was weary from worry. But then Sunday came, overflowing with hope, and these words comforted me:

Because he lives

I can face tomorrow

Because he lives

All fear is gone

Because I know

He holds the future

And life is worth the living

Just because he lives.

This apraxia journey is a roller coaster ride. There are days I feel strong and capable — Jackson’s biggest advocate. Other days I question my ability to get it right.

I never realized I’d be fighting so hard for my son when he was just 3 years old. I never imagined I’d be worried about IEPs and making sure people see him for who he truly is and not the labels they want to slap on him.

Yes, there are days I feel defeated and frustrated — but hope always lingers.

Oh, how I’m grateful for the joy discovered amidst the difficulties. Easter egg hunts. Texas bluebonnets. Ice cream for dinner.

I love this little boy entrusted to me.

Screen Shot 2015-04-08 at 5.29.21 PM

This post originally appeared on JenniferJacksonLinck.com.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.