How Far Should Special Needs Families Travel To Follow Their Gut?

How Far Should Special Needs Families Travel To Follow Their Gut?

As long as the road is in front of you, I would say to keep marching, seeking, querying and always believing you may uncover that one diamond in the millions of scattered pebbles. That sounds nice, doesn’t it.

The real answer is it depends. We don’t reside on the yellow brick road but the real world and very few have the ability, the finances, the time, and family support to follow their gut. Reality tends to squelch guts and so, families are encouraged to follow their guts in moderation. One feel the pressure to listen to their trusted pediatricians, follow the suggestions of specialists, and unquestionably believe the pronouncements of experts from your home state’s best hospital. In the real world, that is not enough. I hate that it is not and I wish that it weren’t so, but your instincts must trump geography.

Amos’ story has nothing new or spectacular to share these days and it was several months ago I noticed the change. The sympathetic glances began, the overt kindness of some and the apparent withdrawal of others, my doctors stopped comparing Amos to their own children and started broaching genome testing. In essence, this meant Amos’ issues were no longer likened to a silly thunderhead moving quickly overhead so we could all head to the pool. This was the beginning of our own perfect storm and we all know how that ends.

Over the last year especially, I have struggled with hope vs. acceptance, worry vs. joy, anxiety vs. peace. Round and round these emotions circle in various combinations and thus, have made me quite dizzy with the thoughts born from their prevalence in my mind and on my heart. To go to Connecticut or not go to Connecticut, that was the latest decision that we are forced to make. It felt right, but then there was that nagging part of me that whispered it was too indulgent, unnecessary, very expensive, and we had been to Duke, wasn’t that enough? My mind agreed but my heart and soul did not and so we traveled, two airplanes and a hotel room compliments of loving grandparents. My mother and I hauled Amos far North and his other grandmother stayed home to tend to my other children after school until my husband returned home from work each evening.

I expected to come home defeated and had prepared myself for this very notion. I had even written about the beauty of acceptance and the peace that comes with the decision when enough is enough. I was inadvertently preparing my tender heart for the expert to tell me we had done all we could do. Why would I do that? For several reasons, mainly being that we had been doing intensive therapy sessions for nearly two years and though there was progress overall, Amos’ speech had perhaps moved a millimeter. I had forgotten about my oldest elephant though in all this too, the surprising source behind the nagging. The roots of a journey and truth were revealed in my most lovely paperclip.

Twenty six years ago, my parents had flown my dying brother to Boston for one last chance at a diagnosis, perhaps even a miracle. They did secure the rare diagnosis, but the miracle did not follow. Instead, they came home with his gentle death sentence and his last weeks were spent in a small eastern NC hospital surrounded by family and friends, a gaggle of teenagers that had left parties behind for hanging out in the small room that housed the dying boy. Yes, my only experience with following your gut had ended badly and though I had not consciously realized this, the rebellion of my heart illustrated a life made weary by those precipitous paperclips.

This time was different though. We departed with hope, not the familiar and anticipated impending bereavement. Don’t get me wrong, these experts were truth seekers as well as truth speakers, and said it was likely Amos could have a genetic anomaly which will require further testing. He has major sensory motor issues which are linked to a pediatric vestibular disorder that again, will require much more examination and testing. We will digest the reports once they arrive, explore ways to get the specifics regarding these previously unknown areas of diagnosis surrounding developmental delay and scribe appropriate treatment plans, considering the findings from these latest evaluations. I anticipate they will look far different from the ones we have had thus far, so that too, will take time and patience.

In late July, we will head North once again for a week of vestibular therapy by speech, occupational and physical therapists who are well-trained in an arena that I had never heard mentioned in my forty one years. I will learn as much as I can and we will video the therapy sessions and share that knowledge with our eager hometown therapists. Those therapists, particularly Amos’ two speech therapists, have worked tirelessly with him a few days per week over the last year and a half. When I broached the travel seeking with them, I was given encouragement and honesty that they too, hoped we would learn something to explain the lack of speech. We certainly did. The specialists there ascertained that Amos also suffers from a severe posterior tongue tie which will need to surgically corrected while he is placed under general anesthesia for the hour long process. It is not unusual but rarely diagnosed due to lack of knowledge among most physicians, according to our Yale ENT. I close my eyes and I allow myself to imagine Amos’ talking and I wonder what the sound of his voice will do to my heart.

How far should families go to follow their gut? You decide.

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