Friday, March 21, 2014

Dear Parent of World Down Syndrome Day

And let us take thought of how to spur one another on to love and good works...
~Hebrews 10:24, NET ~ 

Dear Parent of World Down Syndrome Day,

I remember you from my childhood -- strong, quiet, persevering, isolated.  You once seemed sentenced to the life of an eternal caregiver, grim, but dutiful.  Oh, how you have changed in this generation!  

I got to know you much better through my own special needs parenting journey.  I can remember taking our 7 week old son to the Memorial Day parade and seeing you across the street, happily venturing out with your newborn.  I was impressed that the grimness had vanished, giving way to genuine parental joy, just like every other parent has.  It spurred me on to have a positive outlook with my baby's serious diagnosis.  Your attitude dared me to quickly leave the uncertainty and darkness I seemed to find myself in.

I was surprised in the months ahead when I saw a startling number of you in the infusion clinic at the hospital where we would take our baby to be treated.  Little did I know that so many of you faced the devastating heartache of seeing your child battle leukemia.  Even so, your perseverance as you saw your child through such a battle was, again, motivating and inspiring.

Since those early days of my own parental walk 13 years ago, I have pondered whether people know that you face so much more than just a child with a classic appearance and cognitive delays.  Do they know that you have paved the way for so many of us in so many other areas of illness or disease?  How many of those in the larger public ever take note of how you advocate and stretch medical expertise in additional areas like cardiac care, gastroenterology, vision, endocrinology, mental health, orthopedics, neurology, autoimmune disorders, dental care, dermatology, and urology?  You are on top of your game in so many different ways, ever learning, ever adjusting.

You are bold.  In a world that tries to pressure us into believing that a child with Down Syndrome should be offered an "out" through the option of terminating their gestation, you demonstrate the value of every life by lovingly welcoming that child into your family.  While there is no doubt there are still many difficulties, you are wise enough to realize that no life is without challenges.  You press on with your sight trained on the good.

You are walking hope for the future of so many individuals with so many different diagnoses, largely because you so passionately focus, not on what your child cannot do, but what they can do.  Because of you, new education and job opportunities continue to blossom.  The future is so much brighter than it ever has been before because you, dear parent, fought relentlessly to get us here.  

Stigma continues to be smashed under your feet, because you are tired of putting up with it.  You've boldly stood up to let people know that it's NOT okay to use "The R-word" as a means of insulting others or making them feel less.  You have shown the world that people deserve love and respect, no matter who they are or what their circumstances.

At the same time, you are humorously pragmatic.  While you fight, you remind us that your child with Down Syndrome can be a pain in the fanny just like everyone else.  You shrink the power that the hard parts of this journey have over you by having an amazing ability to love and laugh in spite of them.

You continue to widen the promise of a good future for all of us because you are never content to have your child relegated to a place of less-than.  You show the rest of us how to know our children well, even with all of their quirks, and still be their greatest fans.  You build acceptance because you are accepting.

Congratulations, Parent of World Down Syndrome Day!  While you may sometimes feel overwhelmed by how far we still have to go in making this world a better place for your child, please know that parents like YOU have brought us so far from where we once were.  You spur us all on to greatness.  I am so proud and grateful to know you.

With Love,

PRAY:  Father, please bless parents raising a child with Down Syndrome in a special way today.  Grant them a deep sense of satisfaction in knowing how each of them, even in their ugliest hours, inspire and motivate the rest of us who are on a similar journey alongside them. 

LEARN MORE AT http://worlddownsyndromeday.org/  and explore the many medical challenges that can accompany Trisomy 21 at http://www.medicalhomeportal.org/diagnoses-and-conditions/down-syndrome#ClinicalAssessmenttagless

6 comments:

  1. Thank you I so needed this. I have an 11yrold daughter with Down syndrome and sometimes I feel like in a war by myself. A war that I didn't sign up for and I want to go AWOL on sometimes. Thanks for the encouragement.

    ReplyDelete
    Replies
    1. Oh, KC, bless your heart! Please know that even on the days when you feel like you're "hanging out all over the place", you inspire parents like me. It's not the perfection, it's the love and persistence that makes us the parents God intends us to be.

      Delete
  2. Well written Barb (as always). Thank you and God Bless!

    ReplyDelete
    Replies
    1. Thank YOU, Terri! You are an amazing mom!!!

      Delete
  3. So glad you wrote this! And grateful for those who have been and are fighting the good fight:)

    ReplyDelete