Sunday, December 25, 2016

Aha moment

As Sonzee continues to get older we encounter new experiences in a special needs world that we honestly never gave much thought to prior.  Sure I've seen handicapped restrooms and of course the parking spaces.  I never personally considered these to be "conveniences" to those who need them, but there are times now that I definitely consider them a perk.  A consolation prize if you will.  The thing is that while there are these "prizes" there are the obstacles I never once considered.  

We boarded our flight to Florida this morning and I recently realized that we could take advantage of the pre-boarding option with Sonze.  The added benefit of her medical supplies not counting as a bag would have been spectacular except that we flew southwest, so all of our bags flew free regardless.  Nevertheless, I consider that in the future to be a definite plus.  The flight was actually amazing, all children earned gold stars and Sonzee played in her seat and occasionally took little naps, a perfect traveler in my book.  During the flight I decided to change Sonzee's diaper and so feeding bag and all, we made our way to the back of the plane.

There is one restroom that has an infant changing table..."table" is honestly being kind as its really a 16 x 20 plastic fold out tray.  While Sonzee has grown, it's one of those times I am actually thankful for her "Failure to thrive" diagnoses.  In the small confined space is when it dawns on me, "what do we do when she's bigger?"  I step out of the restroom and ask the 3 flight attendants in the rear my question, "My daughter has special needs, what do I do when she isn't able to fit on the changing table?  Are we not able to fly anymore?" (There was no sarcasm in that last part) All of them gave me puzzled expressions while admitting it was a great question, but they honestly couldn't give me a straight answer.  One suggested the floor, while the other said "maybe in a row".  My next question, "is it even allowed to change a child in the seat?".  The conversation ended with I should call southwest, but that it was a great question. Yay?!?

Sometime later one of the flight attendants came to me and gave me phone numbers for the disability department.  I am honestly preparing myself for them to tell me that at a certain point changing a diaper mid flight will no longer be an option for us so we should consider smaller flights or connections.  It's during these more "aha moments" that no perk of this life is actually a perk.  It's all just heartbreaking.  It isn't even about the fact that she won't be potty trained for a decade or if for her at all.  It is just a reminder of all of the challenges she and therefore we will face as she continues to get older.  The realization of what it truly means to always have a baby.  The fear, heartbreak, and multitude of emotions that accompany this realization are just a lot to take in.  So for now we will enjoy this trip to Florida and take the future as it comes, but for sure in baby steps.

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