What My Special Needs Son Taught Me

Approaching the entrance of Ruth Eckerd Hall to attend Vivaldi’s Four Seasons, I see a family ahead of me. A boy is walking between his parents.  I notice the boy’s blond hair and height. The top of his head reaches to about mid-arm of his mother. He looks to be about ten years old.

Then it strikes me. That’s Samuel’s age. In that moment, I realize I am living an alternative reality. My son is not tall. He only stands twenty-five inches. He is not walking alongside me to enjoy this performance. He is at home with a qualified trach trained nurse watching over him. It’s too much of an unknown to bring him into a venue with 2000 other music enthusiasts. I couldn’t imagine Samuel getting upset and needing to be taken out of theatre. Or worse yet, what if he needs medical intervention or even something as simple as suctioning?

So, to avoid all these unknowns and potential opportunities for things to go awry, we have a wonderful nurse caring for our son.

Vivaldi Four Seasons Concert
Vivaldi Four Seasons Concert

The performance begins and soon the soothing music washes over me as I close my eyes to hear each note. The boy I saw earlier is but a memory. That is, until much later. For days afterward the image of the boy walking between his parents keeps popping in my head. It reminds me of what I don’t have, a normal, fully functional verbal child.

Soon after Samuel was born, I remember seeing a friend’s baby at the mall. All snug in his stroller, I stared at him for a full minute. I didn’t notice his hair, his face or his cute clothes. I was simply awed at how well he breathed. That was a sign, early on, I was living an alternative reality.

Those who know me will agree, I rarely, if ever contemplate this reality. I choose to see our glass as half full. I reflect on the miracle of my son’s life from a dire diagnosis. I bask in the joy of his smile and his laughter. His very life is a gift from God for which I am extremely grateful. He is a living testimony showing nothing is impossible with God.

But things tend to sneak in unawares. Like the day I realized I won’t be a Grandmother. I quickly brush the thought aside.  For what does it help me to see what I don’t have, when what I do have is staring at me asking me to kiss his hand?

Samuel reaches for a kiss
Samuel reaches for a kiss

So I choose to live in the moment. To cherish the time I have with the son God has given me. I have tears in my eyes as I type this.  If I miss this precious truth, I will only see the glass half empty. And completely miss that it is also half full.

You don’t have to a raising a special needs son to appreciate this nugget of truth. The next time you see your babies face (no matter what age they are) cherish the gift you have been given. Live in the moment of seeing them smile, laugh and love life. Your cup will be full. Don’t be too busy with the things around you to truly enjoy your children.  I’ll try to remember to do the same.

Share a moment when you saw your glass as half full. I’d love to read it.

By Evelyn Mann

Author, (WIP), A Miracle In My Living Room

A Day In The Life Of A Special Needs Mom

October 30, 2015

A Leap Of Faith Cancels Fear

October 30, 2015

5 Thoughts on What My Special Needs Son Taught Me

  1. You are amazing. So inspiring.

    Reply
  2. What you have written is so beautiful, you are an amazing lady and mother with a beautiful son. ????

    Reply
  3. This is such an inspiring and insightful post.
    Thank your for sharing 🙂

    Reply
  4. I look forward to haring more about you and your family, Evelyn; thanks so much for sharing! I don’t know that I had a “moment” when I saw my glass as half full. There are many aspects of my life that I am grateful for…despite the truth that I have 4 special needs children. This certainly isn’t the life I imagined for myself. It certainly isn’t a life I would wish on anyone. But that’s not to say there aren’t plenty of aspects of my life to enjoy and cherish. There are days when it is much more difficult to see and remember the glass half full – days when it’s difficult to see the glass at all, being mired down in the trenches and reeling in the chaos of a particularly difficult situation. But there is light in even the darkest of days…just the promise that tomorrow will likely be a better day is a bright spot to focus on. And it’s the dark days that make it oh, so much easier to appreciate the spectacular beauty of – simply – a good day.

    Reply
    • I agree. When asked what I am thankful for, one of the things at the top of the list is health. My health, my husbands health and especially my son’s health. So grateful. Thank you for commenting. I look forward to reading your book, With Angels Wings (www.withangleswings.net). So glad we connected.
      Blessings, Evelyn

      Reply

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