More than a year ago we ‘aged out’ of my pediatrician’s practice as my youngest child passed age 18. We had moved to town just when my first child was born so at that time he had been the only person I spoke to on a regular basis – my only friend!  I wrote to thank him for all he had done for and meant to us over those 25 years, not the least of which was getting us medically through the life of our Down syndrome son.  He had referred us to eye, ear, thoracic, and urology specialists, labs and x-rays and hospitals . . . he’d spoken to us from long distance and on short notice.  In both routine or life-shaping test results or diagnosis, in every crisis he was there.  At every crossroad, he was constant. How can you show enough gratitude for all of that?

twoAfter my second baby was born I had left a message for him and when he returned my call he said “So, a baby that sleeps too much, huh?  I guess your first one wasn’t like that.”  He reassured me since I didn’t want to be celebrating that mine was such a great baby if he was actually comatose or something.  In all of my daughter’s seemingly sleepless years I hadn’t known what I was missing.  And when I asked if I was supposed to have shown her how to play with toys because she would have nothing to do with inanimate objects, the doctor said “She’s just gregarious”.  And I was so relieved that I hadn’t missed doing something already that would stunt her for life.

All those years we went to his office and the children would run squealing and shrieking and probably making people crazy . . . I know I was – usually so exhausted with someone sick before we got there that I just let them have their way.  It’s a wonder we didn’t break an arm or split open a head right there in the office.  My son says his favorite memory is a whale puppet the doctor used to distract them.  Mine is never having felt that he had other places to go.  He never once made me feel that we were taking up more of his time than we should.  We’ve been to plenty of doctors who practically have a bell go off, open the door and holler “Next!” into the hallway when it’s your time to leave.  I always felt like this one cared about us and actually paid attention to whatever thoughts or observations we’d had about the condition that brought us there.

threeI have often said that I have three different species of humanoid for children:  petite, academic girl, big hands-on, all-boy . . . and then there’s Joe. There were so many unknowns with him.  I hadn’t seen a Down syndrome child in the doctors’ office before so I couldn’t tell if he would know how to help us with him.  But he did.  I remember being in the almost empty cafeteria of the hospital during one of Joey’s surgeries and he happened through. He could have just passed by but he stopped and talked.  I don’t know that we even talked about the surgery, thankfully all of my son’s surgeries have been fairly straightforward, but it meant a lot that he would even break stride and take time.

I have written his name on countless insurance and school registration forms.  For 25 years I had his phone number in my head and 24 hours a day I had been confident in what I would find there.  If we were ever unsure about something then: “let’s see what the doctor says”.  I know that for the rest of my life I will be able to hear his voice on the office greeting explaining why they got a new automated phone system, how to use it, and the final: “We hope you will be pleased.”  I heard it a thousand times.

We recently needed confirmation of a Down syndrome-specific x-ray to be eligible for Special Olympics – it was there in the doctor’s records.  So many of the events that mark the evolution of what we have known as ‘parenthood’ happened in connection with that office, with his guidance, or with his permission.  Fortunately my Down syndrome son didn’t have the catastrophic heart defects that pre-natal exams predicted he would but I know that if he had this good doctor would have walked us through those events too.  I recognize that we were just routine part of his work day, but for us his expertise and advice was in and though almost every part of our lives.

allTo all the doctors who have performed exams, evaluations, and surgeries on my children, for all those who encouraged and educated us along those journeys – we can’t thank you enough. We can’t pay enough tribute for the peace of mind you gave us. To various emergency room personnel – I can’t be grateful enough for calmly steadying my panic threshold and getting me through some very long nights.  What a blessing it is to live at a time when all these things are available!

To look back, I wonder how many hundreds of people we encountered in this arena, with all of my children, but particularly with Joe.  How many receptionists did he sneeze on?  How many nurses did he “resist”?  (to profoundly understate!)  Where have all those questions gone that I asked of every technician, anesthesiologist, or specialist?  They’ve all gone to the collective resource pool that is my mind and very little of which I can precisely recall, but which all began with one doctor I could trust.

Down Syndrome Days might be different but still sweet

To read more of Jane’s articles, click the picture.

One person who decided one day that pediatrics would be his specialty.  One referral by a man I’d just met (who would deliver my first baby in a few weeks) who happened to be the neighbor of a cousin I’d chanced upon when moving to a new town.

The tapestry of our lives is woven one strand at a time – – this one worked out beautifully.  Through all the unknowns and in spite of the unexpected, we have survived and been well cared for medically.  What a gift!

About Jane Thurston

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