6 Steps I Took to Reach Peace With My Daughter's Down Syndrome Diagnosis


It took me a long time to be fully at peace with my daughter’s Down syndrome — 11 years to be exact. I hope you don’t judge me, but it really did take me a while. The road to serenity is full of dips, turns, and sometimes treacherous curves.

I have thoughts as to why it took so long for me. I had no idea at the age of 22 that my daughter would be born with Down syndrome. Did the unexpected affect my ability to find peace? I don’t think so. If I had known before her birth, I feel as though my journey would have been the same. Receiving a diagnosis of Down syndrome, or any unexpected diagnosis can be metamorphic. It’s as if one’s brain must race to catch up to an impeding, befuddled uncertainty. Medical professionals are required to give patients knowledge, or the “reality” if you will. It’s up to the patient to determine what he or she will do with this knowledge.

It took 11 years before I was able to merge “reality” with my “hopes and prayers” to deliver my current level of peace. Here are the nonlinear, six steps I took to reach peace with my daughter’s diagnosis.

1. I cried. A whole lot. In the many hospitals. At the doctor’s office. After birthday parties. After IEP meetings. I hurt not because of lack of love, but because I worried what her life would be like as someone who is different. I was well aware of how the world often treats those who are different.

I thought the tears were defeatist and showed my weakness as a mom. I didn’t know their healing power. Those tears were a release, a salve to my wounded heart.

2. I read. A lot. Anything I could find related to sign language, hypothyroidism, and Down syndrome. I read every book on sensory integration I could find.  I researched therapies. I even did the medical Google searches, trying to understand the cause of Down syndrome and what therapies were available. The more I read, the more I learned that no one could really define my daughter, because every child with Down syndrome is different.

3. I acknowledged my fear. Deep down, I was very afraid. How could my nonverbal child (now a teen) survive in a world that thrives on verbal communication? Was she angry because she couldn’t express herself? How would she ever work? Would she ever be truly independent? Back to number 1. I acknowledged my fear with the clause to do something about it. Then…

4. I started writing. Tucked on a dusty bookshelf are the beginnings of my memoir. I’m an introvert. My home is my sanctuary. I’m not naturally “peoplely.” Joining a Down syndrome support group was somewhat counterintuitive for me because of my personality. So I started writing. Writing was my release and my therapy. I was able to express and share my story, so other parents could have confirmation.

5. I found love. As cliché as it sounds, it was my happy beginning. I met my husband seven years ago. He represented the epitome of calm and peace, from my somewhat chaotic, unpredictable life. He promised to love my sweet daughter as his own, and he still does. And when 1 and 2 occur, I have his support and advice. Or if there is no advice, I at least have a hug.

6. I let go of guilt. Nothing I did “caused” my daughter’s Down syndrome. I wanted and prayed for a healthy baby throughout my pregnancy, and I received a healthy baby, even though it took us longer to reach health. She may not be seen as “perfect” by the world’s definition, but she is wonderfully made to me.

So how can other moms and dads find peace with a medical diagnosis? Here are my humble suggestions:

Cry when you must.

Feel what you feel. Let your tears fuel your fire to advocate and fight for your child.

Fight fear with research and exploration.

Ask questions. Don’t accept every answer. Use your intuition. Get a second and third opinion. Then make a plan. And if that plan doesn’t work, create a new one. Every child is different and no doctor can predict a child’s outcome with 100 percent certainty.

Discover what motivates you and gives you release.

Take time for you. Find a hobby or something you enjoy doing. Take care of yourself. Laugh. A lot. Even when it hurts.

Use support.

Find someone who loves your child just as much as you do. It doesn’t have to be a spouse. It can be a friend or trusted neighbor. Even if they can’t “fix” the challenges you’re facing at a particular moment, at least open up and talk to someone. And if words don’t come, just try a hug. It really is powerful.

Avoid negativity.

I mean those who speak “gloom and doom,” such as, “How will you make it with a child with special needs?” Yeah, those types. It’s OK to hope and dream.

Throw guilt out the window.

Life isn’t perfect. Things happen outside our control sometimes. Embrace the here and now and resolve to be guilt-free. Even if finding peace takes you 11 years, it can happen.

A version of this post originally appeared on KeliGooch.com.

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