3 Ways to Focus on the Future as Special Needs Parents

by jphilo | Mar 13, 2015 | Different Dream, How-Tos, Special Needs Parenting

3 Ways to Focus on the Future as Special Needs Parents

Guest blogger Kathy Guzzo is back after a season of dealing with health issues. Today, she’s glad to announce that not only is her health better, but also her adult daughter’s health is improving, too. Today, Kathy writes about how she’s learning to focus on the future again.

Focus on the Future

It had been more than ten years, that’s more than 3650 day since I had seen my daughter styling her own natural hair. Ten years of hairpieces, baseball caps, scarves, and hoodies. Ten years of the constant reminder that she had a chronic illness. Ten years of hoping and fervently praying that one day, life would get better for her. And then it happened. Her hair grew back.

The Past

The saga of my daughter’s hair loss began when she became seriously ill at the age of 16. The stress on her body of two years without a correct diagnosis of lupus and Epstein Barr Replication came severe complications to her organs, muscles and obviously immune system.

Prior to becoming ill, she loved sports; her hair was long, thick and usually pulled back in a ponytail through her baseball cap. When she began losing her hair, she didn’t verbally complain, didn’t lash out at those that stared at her with questioning eyes, but she did become more introverted.

During the toughest years of her illness, although we didn’t really discuss her hair loss, which included brows and lashes, our entire family continually supported her through the ups and downs of the diseases. However, as her mom a piece of my heart broke each time I thought about how these diseases weren’t just ravaging her body internally, but they were attacking her outwardly as well.

The Present

It wasn’t until her hair began growing back, that I realized part of me had lost hope in that possibility. I was afraid to hope, afraid to raise my expectations for a small thing like hair for my daughter, afraid of appearing vain on her behalf, After all, hair is just hair and not as important as her overall health.

Now that her hair has been steadily growing back for a year, I once again find myself struggling with fear. Before it was the fear that it wouldn’t grow back, now it’s the fear that it will fall out again. And that is an awful place to be and not at all where God wants me to be.

The Future

Continually looking back at what was, forces me to take my eyes off of what will be. Even allowing myself to mentally walk backwards, while facing forward creates a shadow of the past and may still cause me to stumble. I need not fear nor walk in the shadow of the past, it can’t be changed. And, I shouldn’t fear the future, what may or may not happen. I need to rejoice in the victories of today, smile when she tells me she got her hair cut again and needs to learn how to style it now that it’s growing in curly.

To accomplish this I have a few phrases I say to myself, sometimes even out loud.

When fearful, I ask myself “What If…?” and realize even in the worse case repeat scenario, I remember we’ve been there, done that, and we can do it again if necessary.
When I feel I’m unable to move forward, I remind myself that all mountains are scaled one step at a time, so while I force myself to take a even a small step, I think about the view that’s ahead.
When I’m struggling to find even a small victory, I choose joy, not because I necessarily feel like being joyful, but because I can rejoice in knowing that God is not only able, He is able to surprise us.

These days, I focus on the future: on moving ahead, anticipating the surprise God has around the next corner, finding hope in the future, not looking back at the shadows of the past.

How Do You Focus on the Future?

Kathy wrote about how she’s learned to focus on the future. How about you? How do you focus on the future instead of dwelling on past difficulties in your life as the parent of a child with special needs? Leave your ideas in the comment box below. Thanks!

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Kathy Guzzo and her husband live in Northern Illinois and have 4 adult children. One of her daughters was diagnosed with lupus and Epstein Barr Replication as a young adult. Another began struggling with depression and OCD in her mid-twenties. She understands the need for her daughters to be able to make their own decisions regarding their health, but the nurturer in her sometimes has a hard time letting go. She desires to direct others to the peace and hope that God has abundantly available for them.

Author Jolene Philo

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Is Differently Normal the Best We Can Do?

Terry Pratchett has a way with words. He’s written oodles of fantasy fiction, and his make-believe worlds are filled with golems, goblins, dwarves, and men. In Making Money some of his human characters discuss politically correct terms for golems, goblins, and dwarves. Finally, they settle on “differently normal” rather than golems, goblins, and dwarves. Which made me laugh.

It also made me think of the present, hot debate in my world about the politically correct way to refer to the ~~special needs~~ ~~disability~~ ~~handicapped~~ differently normal community.

Differently Normal or “Paraplegic Coming Through!”

In a way, the hot debate has been swirling through my life for as long as I remember. For me it began in the early 1960s when our family went to local football games. Dad was in a wheelchair, so mom was allowed to inch our car through the football field’s, drive behind the stadium, and pull up close to the edge of the field. To part the crowd, Dad would stick his head out the car window and yell, “Paraplegic! Paraplegic coming through!”

As you may have guessed, Dad was not shy about his ~~handicap~~ ~~disability~~ differently normal status. He also liked the word “paraplegic”, he told us often, because big words impress people so they moved faster.

Many years later, Dad was told paraplegic was a negative term he shouldn’t use.
So he switched to handicapped—long before handicapped parking spaces were mandated—until that term was nixed.

Then he used disabled—though he never received Social Security disability pay—until that term was given the kibosh, too.

I watched, puzzled, as the terminology changed, but Dad’s condition remained the same. Whatever the approved terms were, Dad still had multiple sclerosis. He was still in a wheelchair. He still couldn’t walk. He still couldn’t work. He still used a urinal and needed help to get in and out of the passenger seat of the car. He still had a great sense of humor for the 38 years he lived with his disease. And I still loved him—still do love him—no matter what word was the politically correct term of the month.

Special Needs Disabled Handicapped Differently Normal

Today, the debate’s still swirling. And I’m still puzzled by our attempts to use words to change the reality of our kids and their special needs. Sometimes we spend all our time and energy discarding words perceived as negative by someone, somewhere. And we forget that our kids who they are. Our kids have ~~special needs~~ ~~handicaps~~ ~~disabilities~~. No matter what words are used to describe them, our children are who they are. We love them fiercely, no matter what the politically correct word of the month is.

So perhaps instead of using all our energy creating and lobbying for meaningless terms like “differently normal,” we should help others see beyond our kids differently normalness. Maybe we should raise them so they bravely face the world, stick their heads out the car window, shout, “This is who I am, and I’m coming through,” and watch the crowds step back in awe.

Your Thoughts about Differently Normal?

What’s your preferred term for differently normal? What are your thoughts about the entire terminology debate? Leave them in the comment box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.