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Wednesday, April 8, 2009

Welcome to Holland

Another appt today at the OB office. Our 'BPP' (bio-physical profile) was pretty much the same as last Friday. Rebekah is practicing breathing, amniotic fluid level was 11.1, heart rate varied from 125-142, she was moving around and looking pretty good overall. She is such a fighter and is doing so much better than anyone ever expected. I do believe the prayers of so many are being heard! I do believe we will get to see a miraculous birth on April 20th.

Since my specialist set the induction date of 4/20, we had to confirm this with the regular OB office. Turns out the specialist will TRY to be there, but can't commit. In an attempt to be light-hearted, Michael tells the OB since he is the one at the hospital on 4/20, he drew the short stick. :-)

I think the OB was struggling with the whole situation. It was the first time he's seen us this pregnancy so as he reviewed the file, he realized what he was up against. He has been in practice for 30 years, so his knowledge and familiarity with trisomy 18 are very old-school. He also clearly stated that it wasn't situations like this that made him become an OB in the first place (after all, being an OB is about bringing life into the world, right?). From his viewpoint, all trisomy 18 babies are not viable. So as we're reviewing the birthplan wishes, we get into the discussion of an emergency c-section. Let me preface by saying that we plan a vaginal birth but, if I am not too far along in the labor process and she shows signs of problems during labor, we want to consider an emergency c-section to possibly maximize time spent with her.

Here we go again but with a slight twist on the conversation... To the doctor's credit, he was trying to be as nice and compassionate as possible. But lets face it, talking about uncomfortable things often makes people say stupid things. This was one of those moments.

He actually tried to dissuade us from considering a c-section because (drum roll please)... we have a beautiful family and four wonderful healthy kids at home and it would be an awful tragedy if something bad happened during a c-section and I died. WHAT?!?! I was quiet and let Michael do all the talking, which he did a great job defending our choices/decisions. I believe the Holy Spirit was leading me to keep calm, quiet, and compassionate towards the doctor at that moment. But imagine being put on the defensive and have the doctor almost threaten your husband with your possible death in a c-section!

Afterwards Michael asked why I didn't make the argument about elective c-sections (as I had done before). Honestly, I don't know other than I was meant to stay silent in the moment.

So this battle for sweet Rebekah's life goes way beyond this one child. This is a battle for trisomy babies to be treated as human beings, to be given an OPPORTUNITY to survive. Don't think they would make that kind of argument for one second for a 'normal' baby that experienced distress during labor!

Anyway, as 4/20 is only 12 days away (YIKES!), I am getting a little aprehensive about everything. A friend of mine sent me the analogy below. This is how I like to view all of those bumps and curves in life. They may not be what we plan for ourselves, but focusing on the lost expectations instead of the possibilities and beauty in what has been given to us can make for a bitter, miserable life. I choose NOT to live that way. Every day is a blessing, no matter what...

this analogy written by a mother of a child with special needs...


I am often asked to describe the experience of raising
a child with a disability--to try to help people who
have not shared that unique experience to understand
it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning
a fabulous vacation trip--to Italy. You buy a bunch
of guidebooks and make your wonderful plans. The
Coliseum, the Michelangelo David, the gondolas in
Venice. You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally
arrives. You pack your bags and off you go. Several
hours later, the plane lands, the stewardess comes in
and says "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland? I
signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've
landed in Holland and there you must stay.

The important thing is that they haven't taken you to
a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different

So you must go out and buy new guidebooks. And you
must learn a whole new language. And you will meet a
whole new group of people you would have never met.

It's just a different place. It's slower-paced than
Italy, less flashy than Italy. But after you've been
there for a while and you catch your breath, you look
around, and you begin to notice that Holland has
windmills, Holland has tulips, Holland even has

But everyone you know is busy coming and going from
Italy, and they're all bragging about what a wonderful
time they had there. And for the rest fo your life,
you will say, "Yes, that's where I was supposed to go.
That's what I had planned."

The pain of that will never, ever, ever go away,
because the loss of that dream is a very significant

But if you spend your life mourning the fact that you
didn't get to Italy, you may never be free to enjoy
the very special, the very lovely things about

written by Emily Perl Kingsley

1 comment:

  1. Jenny Barton JohnsonApril 28, 2009 at 12:04 AM

    Susan and Michael,
    I spend a few days away from FB and look what I miss! I real miracle! I have cried my way through all of your entries and pictures, identified with what I could (had to leave #2 at the NICU-also hardest day of my life) and tried to feel what you may be feeling. Susan-your instincts to do what is best for Rebekah, and Michael, to be the spiritual leader and stay strong...I admire you both so much-your strength and faith. Rebekah Faith is here! I can't wait to share this news with my friends and family. My prayers and love, Jenny Barton Johnson