MDA Mailbag May-June 2008

by Quest Staff on May 1, 2008 - 9:40am

QUEST Vol. 15, No. 3

Thank you, Mom

MDA and Quest have done a great public service profiling the lives and achievements of the many amazing people with neuromuscular diseases. I’d like to celebrate the “Moms of MDA” and pay tribute to mothers who nurture these amazing people. My mother, who passed away Oct. 20, raised five wonderful children, two with spinal muscular atrophy. She showed such courage and stability throughout a lifetime of uncertainty.

My mother, along with our father, instilled simple lasting character traits of responsibility, dignity and integrity. She was there to pick us up when we fell, encouraged us when we wanted to quit, and gave us stern lectures when we felt sorry for ourselves. At no point did she ever make us feel like we were a burden to her or give us a free pass from what the world expected from us. She insisted that we all get an education, support ourselves and not expect pity. She reminded us to remain humble yet stand firm when society became hostile and intimidating.

She was ignorant to recognition or rewards, showing silent strength in the face of what many thought were tough times.  We recognize this sacrifice we can never repay.
She was there when we took our first steps as babies and there when we got our first wheelchairs as teenagers. She held our hands during both not knowing what to expect.  She encouraged me to stick with Little League knowing one day I would no longer have the endurance to continue. I am a better person for the experience.

She was my moral compass and guiding light: “Good manners and simple respect can take you a long way in life.” She created a household of warmth, comfort and safety, protecting us from the shifting values of the outside world.
She sometimes made mistakes which filled her eyes with tears and her heart with sorrow. To try so hard and sometimes fall short made her all the more beautiful. She’d often say, “I did the best with what I had.”

In loving memory of Elizabeth A. Koronowski  — thank you, Mom.

Daniel Koronowski
(Martin, Beth Ann, Jeanice, Cherylea)
Rochester, N.Y.

The power of a smile

Every day I see the rays of sun trying to lurk into my world, my little room that is occupied by a hospital bed, a ventilator, a suction machine, oxygen machine and my TV. All have their distinct noises and remind me of my condition.  The sun ray plays in the walls as the day goes by. I’m visited by nurses, my husband and kids, all of whom I greet smiling, even when the pain in my body at times feels like it’s killing my soul.   I’m like those rays of sun that sneak into my room. I try to be happy and give everyone my happy smile.

Just last week I received a visit from one of the nurses I’d met during my hospice care. She told me she was thankful to me because I had given her a lesson in life. I wondered what that could be.  I had not done anything special for the last 20 months since I got my tracheostomy and ventilator. So I smiled and asked what I had done. She told me, “You smiled at me even when you were in pain, and made me realize that I complain about my life when you’re confined to a bed with a ventilator and you still smile.” She gave me a hug and left.

At that time I figured out that I had a purpose, and that is just to smile.

Myrna Santiago McPhee
Belle Glade, Fla.

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