Today is July 11. In certain parts of America, it is known as “Slurpee” Day. “Slurpee” is a brand name for a slushy drink sold at 7-Eleven convenience stores around the country. And since we write our dates with the month, followed by the day, today is “7/11.” Many 7-Eleven stores will be offering specials on their “Slurpee” drinks all day. And on a hot July day, that’s a great deal!
But today is also the birthday of a very special person in my life. I can still remember the day she was born, and seeing her for the first time. She was beautiful (and still is). She had a full head of thick auburn hair, and seemed delighted to be alive and in the world– and we were all delighted to greet her! I remember commenting that she was a “Slurpee” baby– being born on “Slurpee” day. But shortly after she was born, it became clear that all was not “right” for “Chelsea” (not her real name). Chelsea did not respond to sights and sounds like other babies. And she started having violent seizures. Doctors soon determined that Chelsea had experienced several small strokes when she was in the womb. They also determined that such strokes would continue, and her chances of survival were slim. Immediate brain surgery would be necessary. At one point, the prognosis was very grim– even with surgery, she might be blind, deaf, and unable to control the movement in her limbs–essentially, she would be a vegetable if she survived at all. The first year of her life was a roller-coaster of surgeries and hospital stays, followed by extensive therapy and treatment that continues to this day. But she survived!
So today, and every July 11, Chelsea, and her friends and family, celebrate her life– her survival, her triumph, and her continuing struggle. Chelsea will be 15 this year! She cannot walk, and she has trouble talking and using one arm. But she excels at school–she loves reading and music (Yes, she can see and hear!) and she loves anything having to do with animals, especially dogs and horses! She loves jokes and riddles, and loves to listen to her Daddy play the guitar, or spend time with her many friends. She even loves cool treats– not necessarily “Slurpees,” but sweet drinks and yogurt parfaits! Her life is not easy. Her parents still have to help her dress and eat, even though she is almost fully grown. She has to use adaptive technology to write and do her schoolwork (and what an incredible blessing that it exists!) She spends most of her days in a motorized chair. And, like most teenagers, she has “moody” days and gets frustrated–her physical limitations add to that frustration. But she loves life, and she inspires those around her to embrace the positive.
I am writing about “Chelsea” today, because I love her– she is my grand-niece, and my favorite “Slurpee” kid! But I’m also writing because there are many other “Slurpee” children like her who are not alive today, or who are made to feel unwanted and “less than” other children. Chelsea’s health issues were not detected until after she was born. Had they “discovered” the damage she sustained in the womb, chances are very great that her mother would have been encouraged to have an abortion. The early prognosis was so horrific, and the struggle so difficult, that it would have been seen as the “most humane” option. Her “quality of life” would have been weighed in the balance, and her right to experience life– even at it’s most difficult moments– would have been invalidated by those who claimed to “have her best interests at heart.” Her parents could have made the choice to put her in an institution, or give up on her chances to live a purposeful and fulfilling life. Instead, they made numerous personal sacrifices, and have advocated for Chelsea’s well-being. And, if you ask them, it was worth it all!
I’m not here to judge those parents who have had to face this horrible choice, or those who have determined that they could not provide the care needed to raise a child with “special needs.” The needs are very real, very difficult, very expensive, and sometimes heart-rending. Most people I know have never had to face such challenges. And even my nephew and his wife were not called on to decide on Chelsea’s fate until after they had grown to love her for the baby she was. And there are days when they feel overwhelmed by the responsibility to care for a child beyond what they had ever planned. But I have also known Chelsea, and other wonderful children with extreme needs, who make the world a better, richer, more empathetic, and more joyful place– not because they are “special needs”, but because they are uniquely SPECIAL individuals! I also know of parents who have opened their homes and arms to foster and adopt children with special needs. Their courage, love, and sacrifice have made it possible for thousands of lives to reach their incredible potential.
My prayer today is that Chelsea, and all children who are marginalized because their lives are somehow deemed “less” than someone else’s, will find strength, hope, laughter, and respect. And that those of us who have had a “normal” childhood and family experience would embrace the joy that comes from LIFE itself, and praise the one who gives it– precious, abundant, and eternal life!
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