Impossible Decisions

Why is it, the second you make a decision and feel good about that decision, that decision get shot to hell?

Let me back up.

After arguing, crying (me, not Chad), talking, thinking, praying, and hoping, we officially decided we were not going to pursue Gabriel having the pharyngeal flap procedure.  We would continue speech therapy and supplement with sign language to further his communication skills, but would otherwise, accept what fate has thrown at us and not accept the risks associated with the procedure on behalf of our little darling.

We went to see Gabriel’s ENT on Monday and told him that we were done and were not going to do the pharyngeal flap.  He said we’d change our minds.  He told us that he has only known of two cases that ended with the child having sleep apnea and that the rewards definitely outweigh the risks.  He also told us that he would likely be able to give us an opinion on whether or not the procedure would cause sleep apnea based on the nasendoscopy Gabriel was going to have.

That brings us to today.  I took Gabriel to have the nasendoscopy done.  My intention was to try and record some of it, but since I took Gabriel alone, it was my job to hold him down while they performed the scope.  They put a tiny camera down his left nostril and asked him to say a few things, like ‘mama’, ‘all done’, bye bye’, ‘puppy’, and other assorted sounds.  The point was to see how close the soft palate was to closing off the nasal cavity to make the sounds needed for intelligible speech.

Drum roll, please…

Gabriel’s soft palate didn't move.

That’s right – not at all.  It’s so short it has no movement whatsoever.  The only option he has for intelligible speech is the pharyngeal flap procedure.  If we don’t allow it to happen, he will never be able to use any more letters than A, E, I, O, U, M, and N.  That leaves 19 letters that will never pass his lips.  What was the worst case scenario in this exam?  You guessed it.  We nailed it.

So, now we are back to arguing, crying (me, not Chad), talking, thinking, praying, and hoping.

Because I am at a loss for my own words tonight, I am going to leave you with someone else’s words.  My cousin sent this to me when Ethan was first diagnosed with Asperger’s, but it is so prevalent in both my children’s lives that I find myself constantly staring at my cubicle wall at work where these words live.

‘When you’re going to have a baby, it is 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 of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag 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 am supposed to be in Italy. All my life I have dreamed of going to Italy!’

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It’s slower paced than Italy. It’s less flashy than Italy. But after you have 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, and Holland even has Rembrandts.

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

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.’

-Emily Perl Kingsley