To the Man Who Said 'Just Don't Fly With Him If That's the Way He Is'
To the man on our flight from Minnesota to Texas,
I’m sorry if my son Will’s occasional movements and loud talking disturbed your flight. I truly am, though in all honesty, he was good on this flight and no more active than a neurotypical child would be. He never once directly disturbed your seat, just the empty seat next to you that was in front of him. (I try as much as possible to put him behind empty seats.)
I’m also sorry you couldn’t speak to me or the flight attendants civilly during the flight to tell us your problems with my son, so that either you or we could have changed seats (there were several available). I’m even more sorry you felt the need to loudly bring up your evaluation of my son’s behavior at the end of the flight and not temper your response as I tried to explain the situation.
However, I’m not sorry that I will not heed your suggestion of “just don’t fly with him if that’s the way he is” because, as you wouldn’t let me explain, he needs to fly to Minnesota every other week because it’s his only chance at life. And frankly, no special needs parent should have to hear that callous and discriminatory restriction.
I’m sorry you didn’t take a moment to talk to my boy and see what every other person sees as we travel: a sweet boy with a loving and generous heart, who has a smile and a kind word for everyone he meets. My boy sees the people most of us ignore and I love him for his ability to make friends with every person with whom he comes in contact. I’m sorry you didn’t want to be his friend, because you’ve missed out on something special.
I will pray for you and pray that no one you love ever receives a terminal diagnosis that causes them regression or loss of their faculties that makes others look at them as if they are “abnormal” or “worthless.” Because I never want anyone, even you, to feel how I was made to feel tonight.
All people are significant. All people deserve kindness. All people deserve respect. My son knows that. I hope one day you learn it, too.
Sincerely,
Momma WILLPower
To learn more about Will and his journey with Sanfilippo Syndrome, please visit the WILL Power Facebook page.
To learn more about Sanfilippo syndrome and what you can do to help, please visit www.CureSFF.org.
Valerie Tharp Byers is a doctoral student, wife, mother, dog lover, long distance runner and the carrier of a rare genetic defect that causes Sanfilippo syndrome, Type B (MPSIIIB). Unfortunately, her husband and soulmate is also a carrier of the same rare defect. Their united purpose in life is now to work tirelessly to save their son, who is afflicted with this disease, and to advocate for awareness and research in order to cure Sanfilippo syndrome. You can follow their journey on Facebook.
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