Saturday, January 7, 2012

Down's Syndrome: the education of me (part 4, the end of the beginning)

Start with part one :)

As we left our first Down's Syndrome Guild Meeting, I recalled another time I had joined a club I wanted no membership in.  We lost Ian in 2006, then had a miscarriage a few months later.  We joined M.E.N.D. and attended Camp Sol, affirming our membership in the Bereaved Parents Club.

When we are little, we imagine our lives.  We plan the weddings (with Prince Charming), we play Mommy, we think about what we will be when we grow up.  Then along the way, life happens.  Never do we plan to lose a child.  Never do we plan to have any kinds of troubles.  We never imagine special needs.  Never create a scenario where divorce is acceptable.  Never account time off for dreaded diseases.  Why should we?  We were children.  There is a scripture that reads:
When I was a child, I used to speak like a child, think like a child, reason like a child; when I became a man, I did away with childish things.  1 Corinthians 13:11
As children, we dream big dreams of perfect lives.  We reason that it should be that way, and so it shall be.  When we encounter the challenges of life, we begin to see that childish dream slip away.  Mine was not just slipping, it was shattered.  Losing a child is one of those things you fear, but don't really think will ever happen.  Once it does, it seems the floodgate has opened and all the other potential tragedies of life, that once seemed impossible, might just reach you too.

Fear that my daughter would be kidnapped, my husband would die and leave me a widow to raise the children on my own, fear that I would have a stillborn child, fear that we would face financial ruin and end up having tenets in our own home (We would all live in the master bedroom, the baby would have the walk-in closet as a nursery, twin beds would line the other walls.  My fears have fully-grown legs!)

Still, in all those dark moments of fear and doubt, "special needs" never crossed my mind.  Yet here I was.  Strolling out of the Down's Syndrome Guild, pushing a baby carriage with the sweetest little bundle I've ever met.  Still struggling to come to terms with what it means to be a mother to a special needs child.

And then I realized - I'm just a mom.  Every one of my children has special needs.  Calvin is intelligent and clever and loves for me to spend time with him.  I have to keep him busy or he causes mischief.  Jordan is an artist, singer and loves anything creative.  She is absent-minded and would lose her head if it were not firmly attached to her body.  I have to remind her every few minutes of what she is supposed to be doing.  Ian lives at his Father's house.  I have to love him from a distance and rekindle his memory.  Gavin is a bundle of energy and love.  His hugs come kamikaze-style and often leave visible proof of his affection.  I have to teach him to channel that passion in constructive ways.

So Aaron will be a little behind "typical" kids.  I can deal with that.  I'm his MOM, that's why I'm here.

I have learned so much from this precious child.  I've learned to just RELAX and enjoy him.  I have had very little expectation of what he will do and when.  And you know what?  I've been so pleasantly surprised!  I wonder how much joy I've missed out on in celebrating my other children's accomplishments - just because I was so focused on the next big goal?  And I'm not even one of those competitive moms!  I consider myself to be pretty relaxed already, but I've learned to just lean back and trust that all will be well.
what was I worried about?
less than a year and already in the driver's seat!
 So - my education will continue.  Thank you GOD!  I have learned that I have much to learn.  I've been reminded that I'm not in control of my own destiny, but I know Who is.  I've learned that Down's Syndrome "People" are really just like you and me - sons and daughters of someone who wants desperately for the world to see them for who they are, not for a label on their sleeve.  And if someone slips and says that "something's 'retarded'" then blanches and says "OMG - I'm so sorry, I didn't mean that!"  I'll smile and say "that's OK - I had to learn not to say that too."


  1. thank you for your lovley words on downs syndrome,if only there were more moms who would have the courage to take a stand and accept thier child for who he or she is.

  2. I loved reading your post(s) and reluctantly admit the biggest obstacle I've had with having a son with cerebral palsy is turning on myself about my own ignorance and past tendency to judge. It made me wake up and sob in the beginning thinking about how people might treat my baby in the future. But now, five years later, he is beautiful, social and has to fight girls off. It was MY lesson to learn, and I'm glad that I was given the opportunity to improve - because so many people are not.

  3. love the courage with which you write this story. your raw honesty.
    i,too, believe that remembering that all of our children have special needs is key in keeping the proper perspective. otherwise, the comparison game begins and it is a hard cycle to break.
    so glad i was able to read your story!


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