Category Archives: Costa Rica

Our trips with Emma to Costa Rica for stem-cell therapy.

Traveling with Emma

We are going to Northern California tomorrow for my brother’s wedding.  Emma is very excited to see her Uncle Andy and because we rarely travel anywhere new, this is a particularly appealing trip.  Other than visiting her Granma in Colorado, we have only traveled to places that required us to travel because of medical treatments for Emma.  Panama and Costa Rica for Emma’s three stem cell treatments and Boston to meet with Dr. Timothy Buie, a specialist in autism and GI tract issues.  When we flew to Boston a year later for one of my cousin’s wedding, Emma was convinced we were returning to the hospital where they’d performed a colonoscopy and endoscopy on her.  It wasn’t until we actually got to the wedding and she saw the guests did she relax.  We use to go to Cape Cod every August for a couple of weeks, but haven’t been, since we got Emma’s diagnosis.  In fact it was on that last trip almost seven years ago that we came to the conclusion we needed to get her evaluated.  Even if it were easier to travel with Em, Cape Cod sadly, holds painful memories for me and so I’ve not been eager to return.

However this trip is one Emma is anticipating with great excitement.

“Sleep, wake up, get on airplane, go see Uncle Andy!” Emma said this morning, while bouncing up and down.

“Yeah, Em.  We’re going to have fun!”

“No.  Not going to go on the school bus.  Going to see Uncle Victor, Grandma, Uncle Nic, Gaby, Lili, Liesl …”  she went through the list of all the people we would undoubtedly see at my brother’s wedding.

“Are you excited?” I asked.

“Yes!  So excited!”  Emma shouted and then ran out of the room.

There’s a certain degree of anxiety that comes with traveling with Emma.  Though she rarely has melt downs any more on the airplane, in fact she’s become a wonderful traveler, we always brace ourselves for the unexpected.  Because we aren’t allowed to pack any liquids or her yogurt (she’ll only drink Mott’s apple juice or Apple & Eve Apple juice and only if it comes from a plastic bottle, not a can) we have limited options when it comes to what she’ll drink and eat.  Usually she doesn’t eat anything other than her Pirate’s Booty, though last time we flew back from Colorado I did manage to get her to drink a small amount of the apple juice they served on the airplane.  It felt like a victory.  She use to eat fruit leathers and as they also helped her ears during landing and take off, we used to pack about ten of them.  She has recently been refusing to eat them, but I’ll bring some anyway on the off chance she’ll eat one.

We will be staying in an inn and thankfully the entire place has been taken over by my extended family.  Even if Emma does lose it, at least the people effected by her screams know of her situation and will hopefully be patient and kind.  Even so, it’s tough not to worry.  Richard scoped out the different day trips we can take while there this weekend and there seem to be a great many of them.  He found a pool she can swim in and an amusement park.

“Well we’ve got Saturday and most of Sunday until the wedding covered,” Richard announced earlier.

We’re sitting in the back of the plane, which is a good news/bad news situation.  The good news is, we’re next to the bathrooms, the bad news is we’ll be the last to get off and Emma has a difficult time sitting still after the plane is at the gate.  She wants to get off the plane NOW and can’t understand why we have to wait to let everyone in front of us off first. But who knows, maybe she’ll be able to tolerate the wait this time.

So while Emma is ecstatic and without any anxiety about traveling to see her Uncle Andy, Richard and I are anxiously making sure we’re well prepared and haven’t forgotten anything.  I use to be a very casual traveler, often late to the gate, the last one on board before they shut the doors and pulled away from the gate, winging it when it came to where I might stay the night.  In my twenties and thirties I often traveled alone, to all sorts of places all over the world.  But since I had children, I am a nervous wreck when traveling.

I’ll try to take a page from Emma’s book.  Relax, look out the window, chew on a fruit leather and enjoy the journey.

For more on Emma’s travel adventures through a childhood of autism, go to:


When Richard, Joe and I took Emma to Costa Rica for her first round of stem cell treatments this past March, we arranged to have Alycea stay with Nic.  Alycea is one of those people who is multi-talented; a musician-singer- songwriter, terrific with both children, with an unbelievable upbeat-can-do attitude.  So when we explained to Nic he could either come with us to Costa Rica or stay in New York with Alycea, he didn’t hesitate in saying, “I’d rather stay with Alycea.”

And he had a blast, though there were logistical hoops we had to go through to get him to Denver where we met up with him and Alycea before we continued on to my mother’s.

Upon our return from Costa Rica, my mother said, “Next time you must leave Nic with me.” She said it more as an announcement than anything else.

“But Mom, are you sure?” I asked.  After all she is 81 years old with degenerative disk disease and though she and Nic have a special relationship, I wondered just how she would manage.

“Yes.  I’m sure,” she said, with the authoritative tone used by someone of a certain age – in other words – there would be no further discussion.  “He might like to go visit your sister Toni,” she added brightly.  “I thought we’d drive down with the dogs after you leave,” she said.

My sister operates a working ranch with free-range pigs, sheep, lamb, chickens, a number of ornery roosters and that’s just naming the non-domesticated animals.  In addition she has four dogs, horses and I’m sure, upon this post she will have acquired new animals I have failed to mention.  I can just hear her as I write, “Ariane!  I can’t believe you forgot the __________________!”  (Fill in the blank of some rarely heard of species belonging on a ranch.)  In summary her ranch is a ten-year old boy’s version of heaven.

About a month after it was decided Nic would stay with his Grandma, I heard from one of my three brothers, Victor.  He and his wife, Susan had decided they would also come out, “to help with Nic”.  As it turned out another brother, Andy and his fiancé were planning a trip to Colorado during the same period.  Andy is on Nic’s top ten list of favorite people.

So it was with a certain amount of mental freedom that I boarded the first airplane on my way to Panama to meet up with Richard, Emma and Joe three weeks ago.  I knew Nic would be well taken care and the removal of that particular concern was deeply appreciated.

When we returned from Panama, Nic greeted us with countless tales of Wilbur the several hundred pound boar, the pigs, the lamb, the dogs and all the various adventures he had had while we were gone.  Not once did he mention missing us.  Why would he?  He had been surrounded by my siblings, their significant others and my mother – who should be sainted – for the entire week.  If anything, Nic had a difficult time adjusting to our return as his carefree week of animals and family came to a screeching close.

Victor and Susan extended their stay so they could be here for my birthday festivities, which meant Emma was able to spend a week with them upon our return from Panama.  Emma has always loved Victor and Susan and they return her love. During the winter we over lap for the Christmas Holidays and Victor and Susan make sure they spend a few days skiing with Emma.  When we return to New York Emma asks after them for several months.  We know she misses them.  To also spend time with them during the summer was an added bonus.  Emma was overjoyed, as was I.

“Victor and Susan tomorrow!” Emma said after they left a few days ago to return to their lives in Illinois.

“No, Em.  But we’ll see them over Christmas,” I said.

“See Victor and Susan later,” Emma said. Her way of conveying how much she wants to see them and wishes they were still in Colorado with us.

“Yes, over Christmas.”

“Ski with Victor and Susan,” Emma said, showing she understood.

“That’s right, Em.  You can ski with them.”

“Victor and Susan tomorrow?”  Emma said sadly.

“Do you miss them?” I asked.

“Yeah,” Emma said.

Later that day as my mother, Emma and I were out walking the dogs, Emma said, “Say hi to Victor?”

“Sure Em, good idea.  I’ll send him a text and you can say hi to the camera, I’ll text the photo to them.”

Below is the photo I took as Emma said, “Hi, Victor!”

Richard and I realized early on we needed help if we were going to give Emma the support she needed to make ‘meaningful progress’ as Stanley Greenspan use to say.  We realized her needs were greater than our ability to provide them on our own.  When we made the decision to start doing stem cell treatments, the help we required multiplied.  My family jumped in unasked, voluntarily and cheerfully.  My siblings and mother joining forces so Richard and I could take Emma for her second round of stem cell treatments without worrying about our son was an act of kindness above and beyond the call of familial duty.  It is my family and our close friends who have helped us help Emma.  We could not have done or continue to do as much were it not for them.  Because of my good fortune in having such an amazing family and friends who have given of themselves so selflessly time and again, I feel all the more determined Emma should be given the opportunity to have a life, which includes deep friendships.  That she may one day know the indescribable joy of connecting with family and friends is my hope for her.