11 years to be exact. I hope you don’t judge me, but it really did take me awhile.
The road to serenity… full of dips, turns, and sometimes treacherous curves.
I have thoughts as to why it took so long for me. Maybe it was because my daughter was non-verbal. I kept waiting for her words to spew out and flood my life. But it has yet to happen.
I had no idea at the age of 22, 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.
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 she was different. I was well aware of how the world treats those that are different.
I thought that 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.
A lot. Anything that I could find related to sign language, hypothyroidism, and Down Syndrome. I read any book on Sensory Integration that I could find. I researched therapies. I even did the dreaded medical google searches, searching for a cause…. Even a cure. The more I read, the more I learned that no one could really define my daughter, because every child with Down Syndrome is different.
Deep down, I was very afraid. How could my non-verbal child (now a teen) survive in a world that thrives on verbal communication? Was she angry because she lacked the ability to express herself? How would she ever work? Would she ever be truly independent? So…Back to number 1.
More tears from the conversations we may never have.
I acknowledged my fear with the clause to do something about it. I then…
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 that other parents could have confirmation.
As cliché as it sounds, it was my happy beginning. I met my husband 7 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 & 2 occur I have his support and advice. Or if there is no advice, I at least have a hug.
It’s not my fault. 11 years and I know. I wanted and prayed for a healthy baby throughout my pregnancy. I received a healthy baby, even though it took us longer to reach health. She may not be complete or perfect by the world’s definition, but she is wonderfully made to me.
Feel what you feel. Let your tears fuel your fire to advocate and fight for your child.
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 human can predict with 100% certainty, any child’s eventual outcome.
Take time for you. Find a hobby or something you enjoy doing. Take care of yourself. Laugh. A lot. Even when it hurts.
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” it, at least open up and talk to someone. And if words don’t come, just try a hug. It really is powerful.
I mean those that 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.
Life is unfair. Things happen outside our control sometimes. The world isn’t perfect. Embrace the here and now and resolve to be guilt-free.
Even if finding peace takes you 11 years, it can happen.
Unexpected. Quick. Brief and Succinct. Like wind in mid-summer. My 14-year old daughter…