What can you do for her?

Yesterday (Wednedsday) we had our first Embassy appointment and also took the girls for their medical appointments.  The nurses who weighed and measured the girls were astonished at how small they were.

The doctor was interesting.  She was shocked to learn that we had no other children, and that we were adopting two children with Down Syndrome.  Her face had this expression "Why on earth would you want to do that?"

She examined Elena and pointed out things like the short fingers and toes and mentioned that this was because of Down Syndrome.  She also said that she was underweight and this could be because of internal organ malfunction (not necessarily true, most children with DS are low weight for the first couple years).

Next she examined Juliana and she was suddenly much more grave.  "She has a very bad prognosis" she said.  "What can you (irritatedly indicating Ezra) do?  What can you do for her?  She has very bad heart problem.  Maybe she will live for a few weeks or a few months.   What can you do?"

We explained that we had appointments with the best hospital in America for these types of problems.  She wasn't interested.   "Maybe if she was two months old the surgery would help.  Now she is too old.  Very bad prognosis.  Even if she made it through surgery - what kind of life would she have?  She has Down Syndrome."   She handed Juliana back to Ezra and crossed herself.


It was quietly infuriating.  The heart surgeries in America for children with Down Syndrome are routine.  Yes, it is a serious surgery - that point can not be glossed over.  Yes, there is a possibility that she won't make it through surgery - but I do not think her prognosis is as bleak as the doctor predicted.

What can we do?  At the bare minimum we can still love her and give her a family.  Just because she has Down Syndrome does not mean that she can't be picked up.  Having Down Syndrome does not mean she isn't capable of being hugged or kissed.  Down Syndrome should not mean a life of isolation in a crib until death.  Statistically speaking, most people who are born end up dead - why should a child with Down Syndrome be treated differently?  Even if her life is short (and we hope and pray that the surgery in America will be successful and her life will be full of years) - that should not be taken as permission to warehouse her and deny her the same love and affection that any other child receives.

As far as her second accusation - "What sort of life would she have?  She has Down Syndrome."  That is selling her far short.  No one can make those sort of calls about an infant.  I know many people with disabilities.  I know people with Down Syndrome (and some with much more severe disabilities) who have jobs and live independently.  I know people who are perfectly capable (no mental or physical disabilities) who are content to live on welfare and contribute nothing of value to society.  I know people who are wealthy and unhappy.  I know people who are poor and are happy. Who can tell what an infant will become?  It is not the cards you are dealt, it is how you play the game.    

There is a saying "the best revenge is a life well-lived".  I have seen far too many people with disabilities that were written off by the doctors and the medical community.  "They'll never walk, they'll never talk, they'll never feed themselves, they'll never amount to anything, just let them die."  Yet these same children later are doing all of those things and more.  We sincerely hope that Juliana will get such a revenge.


Both girls have improved dramatically over the last week (yes, a whole week).  Both girls love being hugged and kissed.  Both girls now anticipate kisses and try to give the kisses back.  Elena is walking with assistance very well.  Elena is still babbling but she is making many many more distinct sounds than she was a week ago.  Juliana makes great eye contact and tracks people in the room and turns her head when Kelly or I talk.  Juliana is eating considerably more than she was a week ago.  Both girls are getting cuter by the day (who knew such a thing would be possible?).

...

p.s. the doctor at the end of our meeting, also said that she wasn't sure if Juliana had Down Syndrome or not (stubby toes, stubby fingers, almond eyes, heart condition..... how much more proof does she need?)  We include this because it gives us more hope - it shakes her credibility a bit.