Tuesday, May 29, 2018

How Did We Get So Lucky?


 A few days ago, I got some unexpected news.  Sometime last fall, I tried to get online to the Russian database where our little boy, Mac’s, pictures were updated twice a year.  Instead, I got a message that “this child is no longer available for adoption.”  I was hoping that some foster paperwork had finally been processed, and a supporter of our long-time friends at ROOF had found a way to get him into temporary care in a family.  Often in Eastern Europe when children are in foster care, they are no longer adoptable.

This week, I found out the news was far better.

Our little Mac, Summer 2017, age 5.

Mac is now living in Siberia with his forever family.  They thought he looked like one of their sons.  I know the feeling.
Mac, 2012, following a secret photo shoot when the director of his old orphanage heard we were coming for him.

Mac has been adopted.

While we still haven’t processed our feelings on this news, we know our prayers, and those of our children have been answered.  “If it can’t be us, let him find a family who will love him.”  The children cheered without hesitation the second they heard the news.

Andy and I both said it out loud, “Mac got adopted and he has a family now,” with a head nod and that’s about where we’re at.  This is what we want, someone, anyone to love him.  No more orphanage.


The little boy whose paperwork brought a child from Ukraine into our family…

The little girl who only seemed to be gifted with the unlimited potential of being born in the right time in the wrong place with the now-hope-filled diagnosis of Down syndrome…

The powerful rest of finally being held to sleep.  July, 2013, Daisy's orphanage grounds.

But our Daisy never brought the gift of Down syndrome into our home.  She brought the gift of herself into our lives. 

Daisy’s primary diagnosis is autism.  But an autism so incredibly profound that she seems to learn almost nothing passively.  Even now, nearly five years since the day we met her, she will still rock endlessly all day if you let her.  She will chew her fingers if she is hungry.  She is happy to spin in a johnny jumper or stim with a baton for 8 hours and call it a good day.  She doesn’t show any indication if her diaper needs to be changed.  She is 6, and still wears size 2T clothes.


Seabee (age 3.5) and Daisy (age 6).  She's smaller in person.

Daisy’s life took a radical turn for the better from every day of endless stillness without the muscle tone to even stim in that orphanage in Odessa, Ukraine.
A few minutes of hairbrush stimmies while waiting to visit the ENT.  Dear Lord, she is so beautiful.  
Because today, though Daisy will rock endlessly, we don’t let her.  She is held and tossed, and tickled, and “baby bulldozered” by her daddy.  She has spent endless sessions in feeding therapy, and while she can’t chew, she knows she can walk to her high chair and tap and someone will feed her.  She is given time to feed that sensory input beast that encompasses her entirely of independent rational thought.  Her teacher at school has turned her love of stimmy batons into a daily hide and seek game, teaching Daisy the concept of object permanence.  Daisy doesn’t have to tell us that her diaper needs to be changed, because it’s just what we do. 

Daisy’s least delayed ability, despite being unable to sit up independently at 18 months, is her ability to walk and even run.  She goes upstairs holding only one hand…while giggling at the sensory thrill of it all.

These are not huge news-worthy milestones, but they are all skills that required 5 years to teach.  Think about that. In the country with the most abundant resources for kids with special needs, it has taken a whole team of people 5 years to teach her how to walk upstairs, objects don't disappear when they are covered up, and she is part of the group.

But here’s the thing.  Beautiful little Mac, rotting away needlessly all those years in a Russian orphanage…he could talk.  He could count.  He could eat.  He could walk.  He made eye contact.  He laughed at jokes and engaged in reciprocal play during simple games.  Or so we heard.  We never met him.
Summer, 2015

And isn’t that just the case?

We went seeking that kid with Down syndrome of our hearts.  The little league overcomer, the special Olympian, the kid who makes his first communion with adaptive catechism, who shows his pig at the fair while strangers get teary eyed and ask themselves “how did that family get so lucky?”  There are hashtags and now group tattoos.  But those aren’t for me.

Instead, we got autism.  The least-understood, most alienating diagnosis a parent can get these days, I guess.  Daisy acts so differently, that very often people don’t recognize her special need as Down syndrome.  And in all honesty, it isn’t. 

Autism is Daisy’s primary diagnosis.  i repeat this again and again because it needs to be said.  They did an assessment for private ABA therapy and Daisy’s barriers to learning are at the highest level in all 20+ categories, except one—she is not sensory defensive.  Her 16 or so current skills are at a zero level in every area but two (both got a 2:4)—both because she watched bubbles being blown for 4 minutes and followed them all the way to the ground.  They also changed and ran the assessment for kids at age 2….because there was nothing to test in the age 6 test.  Even in the Down syndrome and autism dual diagnosis support groups, there are never kids like Daisy being discussed.  
Daisy *must* swing!  Early spring 2018

I hope one day she will get a new diagnosis--one that more clearly reflects the group of symptoms that characterize her life's challenges--I'm going to just make it myself and start calling it Austistic Down syndrome.  It isn't a dual diagnosis for her.  It's all in a blender.  All her autism is steeped in a heavy broth of blocked understanding related to her extra chromosome.  She isn't "more alike than different."   

But Mac was.  And there is the tiniest bit of grief there.  

So, what do you do when you unexpectedly find out you have kid with a completely different diagnosis than what you imagined?  When the little boy you still somehow thought might be yours would eventually come home? 

You do like everybody does.  You figure out how to move forward somehow.  First with desperation, but eventually with joy. 

Look! I will bring them back from the land of the north; I will gather them from the ends of the earth, the blind and the lame in their midst...Hear the word of the Lord, you nations, proclaim it on distant coasts, and say: The One who scattered Israel, now gathers them; he guards them as a shepherd his flock. The Lord shall ransom Jacob, he shall redeem him from a hand too strong for him...They themselves shall be like watered gardens, never again neglected. Then young women shall make merry and dance, young men and old as well.  I will turn their mourning into joy, I will show them compassion and have them rejoice after their sorrows.   
-Jeremiah 31: 8, 10, 12b-13

Please read the next blog to hear how we are supporting autism, at-risk kids, and Daisy's hometown in Odessa, Ukraine. MOVING FORWARD WITH JOY! GIVEAWAY

How did we get so lucky?
Their Mac
Our Daisy



1 comment:

  1. Jaime,
    I am honored to know you and your awesome family. ALL your children are very lucky to have you and your husband as parents...never give up the fight, please. Many are blessed by you my friend!
    Renee Thomas :-)

    ReplyDelete

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