Wednesday, September 05, 2007

what life brings

"I am the parent of a child with special needs."
I've able to say that for over 16 years. Although it's just part of the fabric of my life, every once in a great while, the pain is so fresh and tender that it's like it's brand new.

Jonathan was diagnosed with fragile x when he was almost 3.
He is now 19.
He has taught me more than I can tell you.
I'd like to say that I've taught him as much, but it wouldn't be true.

It has not been an easy road. I was a single mom for many years, it was scary, lonely, frustrating and daunting, knowing that he'd be my responsibility way past the age when most kids fly away from the parental nest.

Things like birthdays, major celebrations and milestones are a fierce reminder of what life brings. Even though Jonathan's body has grown, his mind is still young. He's got a child's ability (complete with curiosity, impulsivity and tact) and a man's body (complete with hormones and urges). My life is never dull. I wish it were sometimes.

The first day of school was bittersweet for me. I was so happy to see Adam and Micaela off on their adventure. And for Jonathan, it was a brick wall of a reminder that his much younger siblings have already passed him. I am not taking away from the things that Jonathan has accomplished in his life, but seeing kids his chronological age is tough. Our neighbor is 2 months younger than Jonathan and he drives, has a girlfriend and is well-spoken. Jonathan cannot shave himself, likes to watch "The Backyardigans" and has few friends.

Why am I writing this?
Because the grieving process never ends.
It just changes shape.


Anonymous said...

Be strong girl! You've done a fabulous job raising your challenged son, and you are a fantastic mother. Just remember, things could be much worse. You could be blind and never see your children or their accomplishments--no matter how small. You could be deaf, and never be able to hear their sweet voices, laughter, or cries of pain. You could be paralyzed and never have the chance to run, chase, or play physical games with your children. I know I'm preaching to the choir, and I know you already know all of this, but sometimes it's easy to forget. Everyone has their challenges and difficulties in life. One might be stuck in a worthless marriage, people may not have money enough to feed their children, drugs might be tearing a family apart, and a whole other slew of things that I haven't mentioned. Keep your chin up. God does not give you any challenges he thinks you can't handle. I'm sure that you are deeply loved by many people. take comfort in that thought.

Anonymous said...

i totally understand :)
And someday I'll be emailing you asking for tips on how you get him so well shaven.

Linda said...

Always profound and deep...always emotional. Hugs to you are STRONGER than I could ever be.

Peggy said...

You speak it all so well...