Scoliosis Archives | Sheryl Steines

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Loss of a Child Life is so Bittersweet

Loss

On March 29, 1999, I watched my daughter Stephanie Paige Steines take her last breath. She was born with a neuromuscular disease of unknown origin. It is something that stays with you the rest of your life, only time makes it hurt less; I no longer cry starting a month before her death, and that day, sometimes it passes without recognition. I always remember though.

While her health deteriorated, her muscles became weak, her breathing difficult, her eating nearly impossible, I had a weird dichotomy of experiencing the other side, the wonder of her twin, my daughter Kayla, as she grew stronger, hit her milestones, thrive.

But with each milestone achieved, there was something not completely right, there should have been two reaching these ‘normal' goals.

After Stephi Died

There was always a whisper of sadness through everything that Kayla did and though I promised myself that Kayla would never have to live her life because her sister died, she'd only have to live her life because Kayla was, the whisper, the hint, a piece of the whole was always there.

I hadn't realized Kayla experienced that emptiness until almost 17 years later. Seeing other twins at school hurt, she wanted to scream out, “I'm a twin too!” I will never forget the time I was in a room with four other adults, and three of us gave birth to twins. As the two moms spoke of their twin issues, I wanted more than anything to chime in. But to talk of the loss carries a dark cloud over the conversation and it's not always the right time or place.

The loss is not just my loss, it's also Kayla's. Even though she were 11 months old when Stephanie died, we both feel it especially during great achievements, a great moving forward, always knowing, someone else should be there too.

I feel it now as Kayla is ready to graduate high school, as she's ready to enter college. I'm not just sad because my baby is all grown up. I'm sad because we are missing someone.

There is so much pride for all Kayla has been able to accomplish. Overcoming crippling anxiety, scoliosis, ADHD. She's graduating with amazing grades, a high ACT score and was accepted into three colleges. She'll be attending this fall on her way to full adulthood.

Time makes it less difficult and there are less tears, but it can never wipe away the sadness. I only hope I can make through graduation without the ugly cry.

 

 

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The Daughter’s Almost Fixed

We tried a new therapy for our daughter. Exposing her to the everyday experiencing that most of us take for granted, the ones that make her anxious and worried. But she's not so worried anymore. The therapist has explained to her how her preconceived notions about growing up and her life were lies.

She already holds down two jobs, gets good grades, cares for herself, does her laundry, you know takes care of herself. She's worried about growing up. It's been a painful process putting her in the position to do things that make her uncomfortable but with each exposure I can see her relaxing, her confidence grows and she no longer fights us when we say she has to drive. She even said she could when it rained rather than using that as an excuse.

I feel for the first time since the anxiety reared its head that there is a light at the end of the tunnel. Through the fear of wind, the holding up in the basement for an entire summer, the crying, the ADHD, the scoliosis, eye issues, wrist soreness, meds and physical therapy, there might be an end for her. A chance to simply enjoy life.

She's been through so much and yet we push her through her “homework” her exposures, opportunities to learn how to simply be. Whether its how to fill out her deposit slip for her paycheck, or how to go grocery shopping and navigate on her own, with each experience she's learning that she's okay.

She may always be nervous and scared because we are who we are, but if we're willing to take the chance and make the change, it will get better.

 

 

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