Unseen and Unheard: The Complex Emotions of Parenting a Child who is Medically Complex

by DeAnna Smith

child with santaHave you ever had one of those dreams where you scream and no sound comes out? A wave of panic washes over you as you try to scream for help, yet nobody hears you. This is a perfect metaphor for being a parent of a child with medical and special needs: you are unseen and unheard. It encompasses every negative aspect of this life. From advocating, IEP meetings, fighting for even the most basic of needs, to cashing in on all of those empty “let me know if you need anything” offers from friends and family.

Coincidentally, the interpretation of such dreams means anger, fear, frustration, and helplessness. I know I’ve cycled through all of these emotions at least once a day since my daughter Jaylyn was born.

As parents, not only do we have our own emotions to manage, but our children’s as well. When they hurt, we hurt. Although being invisible is not an emotion, being unseen and unheard is a painful experience. When an unpromised milestone is met, it fills the heart with an overwhelming and indescribable joy that we are often alone in celebrating. This life is an emotional rollercoaster on steroids with very unexpected twists and turns. I have cried tears of both joy and sorrow in equal amounts.

When Your Child is Unseen and Unheard

Involving Jaylyn in the community so she can have peer interactions and hopefully friendships has been a more bitter than sweet experience, as she is often unseen and unheard. Jaylyn loves kids and gets so excited at any opportunity to be around other children. She will sign and approximate “friends?” in the form of a question as if asking me if she will finally make one.

This past Halloween she did this with every knock on our door. She eagerly grabbed handfuls of candy and even snuck in a few hugs. A few kids took one look at her waiting at the door and didn’t bother approaching our doorstep at all. Play dates, library activities, playing outside, and trips to the park have rendered more heartbreak than happiness. Jaylyn does see and hear when she is being stared at, excluded, and made fun of before she’s given a chance. It takes far less effort to explain inclusion to your typical child than it takes to have to explain over and over to Jaylyn why kids are so cruel.

Yes, my daughter is different from your typical child. She has different needs and accommodations that require skilled nursing care. She is also very much the same and deserves the exact same inclusion, dignity, and respect. She has feelings, needs, and wants that are on target with her typical peers.

She goes to a school for children with special needs and it is her safe and happy place. She is very loving and helpful toward her friends at school and is everyone’s biggest cheerleader! Even mine, because even though I haven’t had a solo bathroom trip in forever, Jaylyn will applaud me and say “prow you” (proud of you) with every toilet flush. Yes, even that will spark tears of joy, knowing she has such a sweetness to her.

However, the few sweet moments she has experienced give me hope and encourage me not to give up. I will continue to advocate, and I will continue to fight for anything that will help her live her best life. I know I’m doing an amazing job so far, and yes, I will pat myself on the back for it, too. Unseen and unheard.

Author: DeAnna Smith • Date: 12/9/2019
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