life expectancy

i sat on the hospital bed holding a tiny new baby.  one by one social workers came in.  the first one asked how my marriage was and gave grim statistics about how disability in children was a leading cause of divorce.  i held the baby a little tighter and looked for the light coming in through the blinds.

the next one came with a packet of facts letting me know what i should and shouldn’t expect from my child.  but it was what she said at the end of it all that cut deep, maybe hit the hardest of all of the news of the past four days.

she said it as an afterthought, as if she almost forgot to mention it -

“her life expectancy is about 50 years.”

words can hit like a sucker punch and a mother fresh from a c-section isn’t in much shape to recover from such a blow.  so when she left the room, packet left on the hospital table, i held on to the limited life in my arms and wept.

50 years.

just given to me and the gift of her was being taken.  no parent wants to know the timeline for their child’s life.  and that they’d said it meant something to me that i didn’t know then, but i know now.

she wasn’t valid.  her life wasn’t like other lives.  and so her personhood wasn’t.  and that meant my motherhood wasn’t.  and so when i held my baby in a roomful of friends with their babies, i was always the imposter.  i thought we didn’t count.

yesterday she turned ten.

ten years of changing the woman who wept alone into a real mom.

real moms don’t know what a day will bring.
real moms hold throw up bowls and nurse sick children back to health.
real moms decorate for birthday parties that bring smiles when their children walk in the front door.
real moms see like god, can see in the ten year old the newborn babe there too, somehow all of their child’s life is always before them.
real moms help their children learn to read.

real moms have children with down syndrome.

thank you, mazzy.  happy birthday.

gratitude list ~ one thousand gifts ~ 1223 – 1247

john watching the dark crystal
mazzy’s bracelet
sharing space
birthday crowns
adamski hospitality
watching for the holy spirit
week flying by
hot showers
sharing stories
advil cold & sinus
at the pub with laurel
brunch with erika and vince
praying at traffic jam
kleenex
sharing food
coffee
bag of sleep
vacation next week
ella sharing her feelings
rebecca, again
shannon, so true
jesse
sharing vision
dinner with tyrone and karen
mazzy turns ten

This entry was posted in childhood, disability, mazzy, thankful. Bookmark the permalink.

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8 Responses to life expectancy

  1. Erica says:

    I know that ten is still just a little girl in many ways, but, her pretty-ness is getting so elegent with the lengthening of her limbs.
    I just couldn’t help thinking that from your photos.
    Happy Gave-Birth-Day to you!
    What? We did all the work that day, good glory, you did extra taking all that from all those yay-hoos! ch. I hope you were celebrated too! :D

  2. What a sweet, sweet birthday for a darling little girl!

    Love your list! So many things to in which to be thankful.

  3. Danielle says:

    It shakes me to the core that such woman were allowed to even share the same space as you and Mazzy! You were chosen to shine for her, guide her and love her. She was chosen to shine her light upon you, guide you and love you. She is a gift from the source of love that makes everything around her dim. Happy birthday, shine on!

  4. alyson says:

    walked by your “ole house” today—-miss all of you.

    jeepers, mazzie is growing; i love the one picture of the girls and mazzie’s smile of contentment.

    no matter what child is born; all moms never know a child’s time of departure from us: they are just loved moment by moment, a journey xo

  5. alyson says:

    happy birthday MAZZIE—–love all the bright colors and friends at your party
    uuuumm!!!! the cake looks YUMMY……..smiles xo alyson

  6. Katie says:

    your words touch my heart… and she’s beautiful. :)

  7. Carol says:

    Mazzy is beautiful, inside and out. What a beautiful testimony. Thank you!

  8. Mandy says:

    were did the time go? 10?! Happy 10 Mazzy- two digits is a big deal! Love the list… somehow being thankful for all the little things changes the big things- thank you for sharing that gift with me. it slowly changes me day by day. I am finding contentment in just being.

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