Reincarnated As A Mother

Wednesday, September 18, 2013

Going Dark

I'm, as they say, going off the grid for a while.
Byron and I are taking some much needed "us" time
while my saintly parents are holding down the fort and trying to
corral the animals  children.
For my parting post, I'd like to share with you a letter I wrote to a friend from my past.
I got an email from a guy I grew up with-- he and his wife find themselves in all too familiar shoes.  She is in her late forties and surprise, surprise is expecting.  They just found out they are having a little girl with Down syndrome.
I sat down and wrote this then hit send.
Of course, after I went to bed, I thought of a million other things I should've put into the letter.
So for now, this will be letter one:
Dear ________-
   I remember all too clearly the boiling, rumbling pot of emotions that you and your wife must have inside of you.
Part of me thinks it is a good thing to know ahead of time that you are expecting a child with Down’s.
We had no idea and when the news came 45 minutes after Kean’s birth, we were launched unwillingly into a period of shock, depression and disappointment.
I’m guessing you are going through a version of that now instead of at your baby’s birth.
I think it was necessary to mourn, to say goodbye to our expectations and what we thought our lives were “supposed” to be like.
I look back on those “wet pillow” days and shake my head.  If only the me back then could have known what was ahead and the sheer joy this child would bring to our lives.
I’m certain by now; someone has shared with you the story/analogy of planning for the trip of a lifetime to go to Italy.  You have your itinerary, you’ve researched the castles, cathedrals, the food, the sights and sounds of Italy and you can’t wait to begin your adventure.  And yet, somehow, when you disembark the plane, you find you are not in Italy but instead Holland.  It is quite a shock to your system—the language is different.  The views and vistas are not anywhere near what you expected.  But soon you realize there are amazing things to do, see and taste in this country as well. It is not what you had planned but an incredible, fulfilling experience all the same.
It is the same with this new adventure into Down’s territory.  You are still going to have a sweet, scrumptious baby.  You’ll find a new world of experiences and precious, tender moments – he will be so different from your other children and yet so alike.
In fact, one of the nurses who took care of Kean in the NICU gave me the best advice—he told us to treat him like all of our other children.  If we treat him like he has Down’s, he will act more and more like he has Down’s. 
Prepare yourself for your baby to look like your other children.  I remember when Kean was born and they told us he had Trisomy 21.  Byron’s reaction was “well you’d better check the rest of our kids for Down’s because he looks just like the rest of them”!  You will spend more minutes than there are in an hour and more hours than there are in the day staring at this child trying to decide if he looks like he has Down’s or if he doesn’t. 
   Be careful and prayerful about what you read in preparation for this baby.  In my case, since I was on bed rest in the hospital for 75 days, I think it was a blessing not to know in advance.  We had so many other issues we were worried about.  In your case, it will be a blessing and a curse.  You can prepare and should prepare - but don’t let yourself get caught up in all that “could” be wrong.  In the hospital, they gave me a book:  “The Parents Guide To Raising A Child with Down syndrome” or something along those lines.  I was already an emotional and hormonal train wreck and this book had chapter after chapter of all the health problems Down’s children are more likely to have in their lifetime.  Just imagine if the hospital gave you a book when your first child was born that detailed every possible bad thing that could ever happen to your child in the years to come.  You’d be freaked out of your mind.
   You need to know that heart problems are a distinct possibility.  Many Trisomy 21 babies are born with heart issues and face early surgery.  But I know many of those children who are thriving to this day.  And I know many children who are born with healthy hearts.  Kean had an open flap.  We had to visit the Cardiologist regularly but it closed on its own and we did not face any procedures.
   I guess what I am trying to say, is don’t get caught up in all the scary what if’s.  I had to put that book away for a while.  My sister-in-law gave me a book called “Gifts” and that is the book I think every hospital should pass out with these special births.  It is a compilation of essays written under the categories of  “the Gift of Patience”, “the Gift of Love” etc.  It is written by parents of Down syndrome babies and it is a beautiful, spiritual book.  As I read this book, I felt over and over again that my feelings and emotions had been given a voice. 
We also received a book called “We’ll Paint the Octopus Red”.  I know your other children are mostly grown but this is a wonderful book that calms the fears and explains the unknowns to siblings.  The bottom line is that your child will be able to do most everything all children do; it will just take longer for them to learn.
   While I am on the subject of siblings; someday you will realize that this child is one of the greatest gifts your other children will receive.  My three girls are much more kind, charitable and giving than they would ever have been without Kean in their lives.  I remember the first year of his life; both of my older girls were awarded special certificates at an assembly at their school for being the most compassionate girls in their grades.  What was interesting, is the two boys who won the awards for their same grades each have a brother with Down’s.  You can’t call that just a coincidence. 
   We are all much better for having Kean in our lives.  I can’t begin to find the words that will convey what a joy he is and what he has brought to our home. He inspires us on a daily basis.  He works so hard to accomplish what comes so easily to others.  He is almost always happy—he is sheer joy. Pure love.   I can honestly say, without hesitation that if given the chance, I would NOT take away his Trisomy 21.  I love and adore how he is, who he is and the giant spirit that resides inside his little body.  I would, however, take away his cancer.  That’s a given.  In fact, now that he has cancer and it has been so difficult,  I look back at what seemed like such huge challenges and hurdles associated with him having Down’s and it really was nothing.  Once again, if only I had known then what I know now.
   I recently saw a headline that touted how researchers have found a way to turn off the extra chromosome and will eventually take away Down’s altogether.  It made me terribly sad.  Did you know that Down syndrome children are called the “Eight Percenters”?  That’s because 92 percent of the women who find out in advance they are pregnant with a Down’s baby go ahead and abort.  A world without Down’s would not be a better place
   If only they knew what I know.  Oh, if only every family could be so lucky to have one of these special spirits in their homes.   
   Kean has made each of us in our family want to be better— there is something very special about this child.  He touches all those who meet him.  I am so excited for you.  For your family. For your friends and all those in your circle of influence.  I promise you, someday very soon you will understand that this new little life will change everything—everything for the better.
Much love,


Terra Lorien said...

Beautiful post! Thank you for reminding what is important.