Showing posts with label love. Show all posts
Showing posts with label love. Show all posts

Sunday, March 4, 2012

Those Moments

-He climbs in our bed between 3:30 and 5:30 am every morning.  He snuggles so close, as if he could be absorbed back into my belly.  His hand touches my cheek and his fingers flutter.  His hand moves from my cheek to my hair.  He sucks his thumb, sighs, and goes back to sleep.  His breath in my face...I don't care what it smells like.  Pure, powerful love.



-Feeding him bits of food that he cannot feed himself.  He kisses my cheek over and over.  Sticky, wet kisses.  It makes me wonder if he is more finely tuned into the collective consciousness.  As though he knows his brothers and sisters with Down syndrome across the ocean are not fed from a hand that loves them.  He savors what I give him and knows it is just one of the ways I show my love. 



-New friends visit our house.  He immediately climbs onto their lap.  He hugs them, pats their face, kisses their cheek.  I see the realization in their eyes.  They are slowly "getting" the secret.  

-At therapy, when he is tired of working, he tries to cuddle with the therapist.  Some fall for it.  One doesn't.  She says, "I will love on you after you finish this."  He finishes and she loves on him.

-At therapy, another child cries.  His sweet heart breaks with empathy.  He cries.  He wants to hug the other child, but first the other child has to stop crying.  Because he can't stop crying otherwise. 

-His brother and sister are doing whatever.  With no warning, he walks up and hugs them.  Then he walks away. 



-He is incredibly playful and social.  Anything fun.  Anything with other people. 



-He collects ball caps.  His grandmother's coworker gave him from Winn Dixie because he was always trying to remove hers.  His uncle gave him the one he was wearing last time he visited.  We have over ten ball caps hanging on a rack in the living room.



-His small hand holds mine.  He likes for our fingers to alternate instead of the usual way a child holds a parent's hand.  It is awkward because his fingers are so much smaller but that is what he likes and I obey.

-His sensory needs force him to lick things.  He licks me often...my arms, my hands, my cheeks.  It is slightly odd but he smiles after he does it.  Perhaps it is a form of affection and not just sensory. 

-Music moves him. Any beat, any genre. He keeps time remarkably well. He will begin dancing and I have to stop my busy mind just to find the music.
What else am I not hearing?
-We are in a store. He signs "dog" or "bird" or "baby". 
Where's the dog sweetie? 
It takes me forever to find it. It is a minuscule image of a dog on a package or a shirt. 
That's right! It is a dog. 
What else am I not seeing?

-In that same store, a stranger looks at him. Probably wonders. Does he or doesn't he? Did she know while she was pregnant? Is she sad to have a child with Down syndrome? Then he waves, smiles, and blows a kiss. The stranger smiles, laughs, and tells me how precious he is. 
Oh, trust me I know. 
I hope the stranger concludes that I'm not sad.
Never sad.   It is a secret that I want to share.

-The bus drops him off at 1:00. He is ecstatic to see me, but first he has to hug the bus driver.  Then he practically leaps off of the steps into my arms. How was your day sunshine? He smiles, squeezes my face. I have to go back to work sunshine. A big kiss and hug.  I'm out the door but he is waving through the glass.
 

-Four hours later, I return. You would think I had been gone for days. I can't go to the restroom, put my stuff on the counter, or simply say "Hi." I must stop, pick him up, and love on him. 
He is angry otherwise. 
Nothing else matters.
How often am I missing what is truly important?  How many sights, sounds, moments?

He is teaching me.

Monday, January 16, 2012

Paving The Way

I'm currently reading a fiction novel titled Jewel about a child born with Down syndrome in Mississippi in the mid 1900's.  In the novel, the mother is told that the child is a "Mongolian Idiot" and should be institutionalized.  She refuses.  As any mother can imagine, I wept during that part of the novel.


As the day honoring the birth of Martin Luther King Jr. comes to a close, I want to share again my favorite quote.  It is my favorite of all time, not just my favorite of Dr. King's. 

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."

I know men and women who have truly lived this quote.  Who are they?

  •   They are moms and dads. 
  •   Their children are no longer children.
  •   Their children were born at a time when medicine did not understand that nature and nurture     should not be opposite of each other in a versus situation. 
  •    Their children were diagnosed and written off as failures. 
  •    They were told things that were impossible for any doctor to know: 
    • Your child will never walk. 
    • Your child will never talk. 
    • Your child will die before the age of 2, 5, 10. 
    • Put your child in an institution because you do not have the tools to care for him. 
  •     They said "no, you will not take my child from me." 
  •    They said "no, you do not know what he can accomplish."
  •    They took their child home, loved him, taught him, and if the worst happened and the child died young, they mourned and never forgot.    
  •    They became advocates.  They knew that a brighter future was possible.
  •    They paved the way for Trent, other children, other moms, and me.   
How can I ever repay something like that?  Will promising to carry the torch be enough?  Because I do promise that. 

Although this love letter goes out to all parents that have paved the way, I especially want to thank those moms in our local support group.  While you are cooing over our small ones and remembering when your son or daughter was that small, I am standing in awe of what you have accomplished.  I am measuring you by where you stood at your moments of controversy and challenge, and I am deciding that you are one of my heroes.   Thank you.