Tuesday, May 9, 2017

Siblings of Special Needs Children

Daily Gratitude Year 5- Day 129: Today, I am grateful for the beautiful, courageous, self-sacrificing, world changing, tenderhearted siblings of special needs children.

The other day, I was reflecting on the 2017 graduation class. They are the first class I had in Jr. High when I made my job change. The year behind them, I got to know even better, as I had them for two years before they graduated. The adolescent years are hard. Most survive, and a few thrive. 

I started thinking about certain kids. Amazing kids. Kids who try really hard, but just miss the starring role or accolade. Youth who seem to instinctively think of others. They hold doors open for someone passing through. They diligently try to follow through. They are not perfect, but they work so hard. They strive to be the best they can be. And it struck...  many of them are siblings of children with special needs. 

Be it a chromosomal count, a genetic difference, a chronic or life threatening illness or some other health condition that makes a person different... their siblings become their defenders, protectors, comforters, cheerleaders and best friends.  Some will eventually become their caregivers and guardians. 

Mama Ina Mae's little sister was bright, vivacious and special from the beginning. Spinal meningitis before the age of two nearly took her life, but she survived. The high fever caused brain damage. She would be forever changed. She had to relearn walking and the language she had acquired.

Grandma and Grandpa were instructed to put her in a state institution, there was no money for private pay. That was 60 years ago. Grandma had worked in the very institution suggested and saw some of the care and practices. She said, "Over her dead body." So, Grandma Opal Maxine called on the other children to partner with her helping Aunt Helen reach her full potential. My mom was the oldest, so there was always added responsibilities

Aunt Helen survived. With tender care, love and a bit of Bess/Guttendorf stubbornness, she survived. Actually, she thrived. They protected her and pushed her. They patiently (okay, maybe not always with patience, as they were children and human) made her do for herself what she could. They didn't talk down to her. They included her where they could. We children were all taught to give her the same respect that all of our other aunts and uncles received. 

We, the nieces and nephews, loved Aunt Helen. There was no fear. We spent hours in her bedroom... her sanctuary... listening to her records left behind by grown siblings when they married and moved out. We know our Connie Francis and Tammy Wynette!  "The Lion Sleeps Tonight" was another favorite on the turntable. We were her chance to be the grown up. Bossy... but how she loved us. She still does.

Aunt Helen was a grown-up who played games with us. We adored her. When old enough to understand, our parents told the story of what she had survived, but up until that point... she was just "Aunt Helen" and we loved her. She would con us into cleaning her room and give us tiny prizes we thought were precious. She had some great crafts for us to play with recycled items like gum wrappers. Aunt Helen was green thinking before it was cool. 

Aunt Helen was not to be feared or left in a corner... she was celebrated. 

Today, she still thrives. Around 1973, she began working at the Kankakee Community Workshop Training Center. She is still there. She has at least 44 years in and has no plans to retire. "What would I do?". She does the most humble of repetitive jobs with pride.  Ask me about "clamming". You probably don't know what it is, but she does it and it makes your life better on the morning drive. 

To bring this around and land it back on the reason I am grateful today... the siblings who helped raise her had to grow up fast. Grandpa was a long distance trucker and Grandma worked full time. They parented and protected Aunt Helen. They challenged her and cleaned up after her when she was learning new things. While they were teaching Aunt Helen basic life skills, she was growing them into kind, compassionate, self sacrificing human beings. 

When I look at some of the most amazing young people who have passed through the school in my season there... some that really stand out... are some of our siblings of children with special needs or serious health issues. The things they have learned at home will help them change the world. 

They don't just go out and do good things in the community... they go home and do the right thing at home. These amazing youth will change the world. They will lead the way with tenacity, dedication, kindness and love. 

And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me. -Matthew 25:40

"So the last will be first, and the first last.”Matthew 20:16

Today, I am grateful for the beautiful, courageous, self-sacrificing, world changing, tenderhearted siblings of special needs children.

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