Honoring Mothers of Children with Disabilities

By April Olson

Mothering is a blessing. All mothers want their child to have the best of what the world offers.  As we parent, we hope our children will reach their full potential.

I am a mother of a healthy 19-year-old-young woman. I am also a mother of a 12-year-old boy with a rare congenital muscular disease. It is a debilitating progressive disease that saddens me every day.

I have a foot in the healthy world where children grow up worrying about normal things and I have a foot in the door where a child grows up losing abilities and is ill.  Philip Ryan is blind and suffers from seizures.  He is only able to speak in one-word phrases and is slowly losing his ability to walk.  He is an amazing boy. We love him so very much. He came as a little teacher for everyone who is willing to receive what he has to offer.

He taught me to pray before every meal when he was 2½ .  When I am having a bad day, he will hum “Born Free” to me.  His feet hurt every day, feeling like pricks all the time, so we rub them and he hums “Amazing Grace.”

There have been exams, medical procedures, surgeries, more exams and losses in abilities that most of us take for granted.  It’s more than any human person should endure.  So often people will say, “You’re never given more than you can handle.”  I have learned the graces of letting go and letting my “higher power” handle what I can no longer bear.

Every mother wants her child to belong, to be accepted, to have self confidence and grow up to make their meaningful mark in the world.  Debilitating muscle diseases make all of those dreams much more difficult.

The good news is that there is hope.  Research can bring promising new drugs and treatments to restore the health and strength of these kids and work to ensure that other children avoid this horrible disease.

On this Mother’s Day, you can honor mothers caring for children with life-threatening and debilitating illnesses by sending a card.  But a better gift might be to send a check to an organization that is working on important breakthroughs in medical research to truly help these kids and their families.  Each person in our community can make a direct difference.


This entry was posted in CMD Perspectives. Bookmark the permalink. Both comments and trackbacks are currently closed.
  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

  • Register Now!