Wednesday, July 4, 2012

Thirteen Things I Never Knew

"There are no extra pieces in the universe.  Everyone is here because he or she has a place to fill and every piece must fit itself into the big jigsaw puzzle." --Deepak Chopra

July is the time when I invariably reflect on my little bundle with an extra chromosome, Patrick.  He is my third child so I thought I had it down...at least a little when he was born.  Turns out I didn't know squat.  I call Patrick my "Freedom Train".  Without his presence in my life, I cringe at the kind of mother I could have been to both Jack and Mary Kate.  I'm pretty sure I would have made that Tiger Mom look like a kitten.  Then along came Patrick -- the universe gave me one big old chill pill and helped me to unlearn and relearn some of the very most important lessons on living.  

In honor of his 13th birthday on July 1st, I give you the 13 things I never knew I never knew until Patrick.

1) People with a disability are not running around wishing they didn't have their disability.  They are busy living their life.  If you can't help them, get out of their way and at the very least hook them up with someone who can.  They need no pity...trust me.

2) Moms and dads of kids with disabilities love their children ferociously and tenderly in this crazy blend found in the moment.  They know how to find their voice and ask for what they need...turns out their children gave them that voice.  They know when to fight.  They know when to lay low and lick the wounds.  Their love is in no way any less than their love for their other children.

3) CHILL -- please try it.  I beg you.  Just chill.  Honestly, it will help even in an emergency.  Patrick chills every single day.  When he does it, he is in the moment, present with whoever is with him, living the way we are all meant to live.

4) Maybe it all revolves around the ability to chill...because when you have something that is stressing you out, Patrick has shown me that the way to get through it is to take it moment by moment.  Don't try to think too far ahead.  Patrick lives the way Stephen King writes his novels: pretend you are on a dark road with your headlights on.  You can only see so far.  You drive a little farther on and you see a bit more.  You just keep driving that way and the entire road will eventually be revealed but only in installments of great light, bit by bit.  

5) When I was at my worst as a mother -- downright bratty, rude, scary, mean and all about me -- guess what Patrick did.  He looked me in the eye and opened his arms wide.  He embraced me and loved me at my very worst.  He was two.  It's pretty humbling and mind blowing to receive unconditional love from someone so little in such a genuinely deep and abiding way.  He taught me that we all deserve that wide open embrace...especially at our least deserving moment.

6) Rock out -- you know that quote about "dancing as if no one were looking".  Patrick really does it.  The groove just goes right through him and he feels the music in a very primal way.  If you dance this way (and sing this way), you can't help but feel free and full of joy.  It's the way we are meant to dance.  Heck, it's pretty much the way we are meant to live.

7)  Inhibitions,Shminihibitions...just a barrier.  Patrick doesn't hold back.  Normal cultural inhibitions are far fewer for him.  He runs up to you at the library if you've left him for five minutes to find a book and gives you a big old hug as if you had been gone for a fortnight.  He points out the obvious and keeps it real.  He cherishes his rather round belly.  He tells anybody who asks that it is just like Santa's -- there is no greater compliment for Patrick.

8)  Rushing is really not where it's at.  Be leisurely.  Take it slowly.  Stop to sing one more song or have one more dance.  I cannot tell you how this one small tweak of a mindset has so drastically improved my life.  Turns out that the slow, careful way that Patrick learns and lives is fantastically beautiful.  I'm so privileged to watch this gorgeous flower unfold in his perfect time and without his guidance I would have missed it all.

9) Slow does not mean stupid.  It's so easy to pigeon-hole people -- so effortless to assume that because Patrick processes things in a slower steady rhythm that he isn't capable of deep understanding or meaning.  He has moments of insight that flash brilliant for me.  His memory is amazing.  He has his own genius...it's just not in the typical wrapping paper you're used to.

10) Sibling relationships are the same for people with disabilities and those without.  They bug you; drive you crazy; make you laugh until you pee; freak you out; and offer up some of the very best truths about love and humanity that you will ever know.  Siblings are not cheated of some typical relationship at all.  They are given the many typical experiences but enriched by seeing the world through a different lens.  The sibs learn empathy, compassion and unconditional love through osmosis. They are blessed.

11) I like to think that before Patrick I knew how to love but in truth I have been washed over with a tsunami of love knowing Patrick.  It makes my small little pond look rather shallow.  Love is deep...real deep.  It gives us superpowers -- strength, endurance, tenacity, patience, kindness and compassion -- that we didn't even know were in there.  It reveals the essential truth: love is boundless, ever present and ready to support you through anything.  Love never fails.

12) There is no downside to celebrating and cherishing the moment for someone else.  Patrick is generous in his joy.  I really want to be like this...try to be like this...but whatever I have gleaned is from the master.  For Patrick, it is simply his way.  For me, his closeness with God is reflected right here. 

13) Perhaps the biggest thing I didn't know is just how normal it is having someone like Patrick in your life.  I am not wandering around thinking about Down Syndrome 24/7.  I am not upset each day that God played some cruel joke on Patrick.  I am not burdened or beaten down.  In fact, the load is actually quite light.  My marriage hasn't suffered.  My other children haven't been ripped off.  We're a pretty typical family with pretty typical annoyances and rarely, if ever, do they have to do with Down Syndrome. 

I sure wish I would have known that at the very beginning.

Today I'm grateful for my son Patrick and his designer genes.  Happy Birthday big guy!

28 comments:

  1. Absolutely brilliant. Beth, you spoke my words so clearly. I love that Freedom Train boy of yours.

    Celebrating the 13th year of Patrick.......what a beautiful world it is, because he is a part of it. We are all part of it and how sweet it is!

    Peace and love, Tara Marie

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    1. Awww TM, Thanks so much! I'm so grateful to share this journey with you soul sister. Hope I get to see you and Emma Sage soon! Hugs! ~Beth

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  2. Thank you, again, Beth....The ease with which you share your experience is so powerful. I want the world to know about your family, and your writing....

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    1. Diana...you are probably my biggest fan -- after John! Your support and encouragement mean the world! Thank you so much! ~Beth

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  3. Oh Beth this is so beautiful. Happy belated Birthday to Patrick :)

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    1. Kari...thank you so much! It really means a lot! ~Beth

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    2. Oh Beth! I love, love, love this so much!!!!! I still have goosebumps! I could never have said it better. Perfectly said, perfectly felt. I am so lucky to know you and Patrick and your beautiful family! Love and hugs Beth!

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    3. Awww Lisa....I'm so glad you love it! Just told our side of the story -- what we know and live every day. Lucky to know you too, Lisa! :) Thanks so much!

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  4. Beautiful, of course. Happy happy birthday Patrick!

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  5. After only 4 1/2 years into our journey, I can already say I agree wholeheartedly! You put it into words so beautifully!! Love this, Beth! Thank you for sharing your heart :-)

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    1. Monica...you said it first and I agree -- JM and Patrick have a lot in common...maybe we should start with the twinkle in their eyes. :) Anyway, thank you so much!

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  6. This was so beautifully put. I wish feeling this way about our kids was the rule, and not so much the exception right from the start. Life is great with our kiddo's! :)

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    1. "Life is great with our kiddoes." Couldn't agree more...I think we need to just keep telling the truth and maybe it will finally sink in for those on the outside looking in. Thanks! :)

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  7. Just beautiful Beth. You said exactly what I've wanted to say and said it beautifully!

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    1. Thanks Penny! I'm so glad you love it! :)

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  8. Love this, Beth! What an amazing reflection from an amazing mom!

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  9. Fantastic!!! One of the best things I've ever read about Down syndrome (my son is 10). Thank you for sharing this with us and with the world!!!

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  10. I'm so glad you liked it!!! Thanks for your kind words. :) ~Beth

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  11. You are welcome, Katie! I am so glad you liked it! :)

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  12. Loved, loved, loved this. People who don't have a child with a special need don't get that they are kids first, and our kids, and yup they may be different, but its not all bad.

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    1. Sammie...so happy you loved it! It is ironic that the world feels bad for us, isn't it? If only they knew the truth! ~Beth

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  13. Fantastic Beth! I wish all new mom's of kids w/ DS could know you and specifically read this. It's all so true. Sometimes I feel sorry for people that don't get to know my Luke and experience his constant joy. Thank you for sharing your gift of words with us.

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    1. Awww Amy, thanks! I agree...if only the world could truly know what our daily life is really like and could know that level of love the world would be a beautiful place. :) ~Beth

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  14. I am a teacher who works with students who have disabilities and I'm going to print this off and keep it on my desk...this is why I chose to teach my precious students! Such a sweet reminder, thanks for reminding me of all the reasons I love my students!

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    1. Katie...thank you so much for letting me know. What a compliment! And thank you for the important job you do day in and day out. :)

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