Right On The Mark





It would be hard to get through National Down Syndrome Awareness Month without talking about how grateful we are for the medical team in our lives.  You see, Hayden just had major surgery last Friday and is still recovering, so I’m especially grateful for the doctor, nurses, the anesthesiologist, and the dentists, who got us through last Friday.  Oh, and the super strong guys who came into the recovery room to help the recovery room nurses and me hold Hayden down when he was coming out of anesthesia.  Good times, huh?  Who needs Nautilus when you have a 14 year old boy who’s dazed, confused and armed with SuperMan strength?!

The surgery that Hayden underwent was his ninth such one, and for those of you who know Hayden very well you’re guessing correctly that it was a major ear surgery.  This time the surgery was on his left ear, where the ear canal had almost completely closed in on itself and then became dangerously infected right around his birthday in late August.  We are new to “Our Town” and I thought meeting the new ear, nose and throat doctor (or otolaryngologist for all you “medical mommies & daddies” out there!) was just a perfunctory measure because  Hayden had been doing relatively well, with only a few occasions necessitating ear drops in the past year or so.  But when we met this new ENT, he took one look at his “surgical ear”, the one that barely had a pin-prick hole in it for an ear canal, and said we absolutely needed to get in there for an exam under anesthesia as soon as possible, just to see what was going on behind that pin prick of a ear canal.  I’ll do just about anything to prevent my child from going under anesthesia for any reason, but I saw his point.  But by the time of our next scheduled follow up appointment, about three weeks later, Hayden had contracted one of the nastiest and scariest infections in that ear that I had ever seen.  Now we were in “stat” mode.  Get ‘er done ASAP!

ASAP turned out to be last Friday, with many of you praying over Hayden and our whole family the entire day (it was a six hour surgery, including a dental exam, CT scans and a brain-based hearing test called an “ABR”).  We can’t thank you enough.  While for the most part we were alone throughout Hayden’s surgery and his stay in the hospital, except for one wonderful woman from our church who spent a lot of time waiting with us on Friday and then checked in on us on Saturday, we felt your presence and have appreciated all your kind words and thoughts for Hayden throughout the entire process.

I want to give a shout out to our ENT, Dr. Mark Griffin, who not only brings a very high level of expertise to our case, but since the first MINUTE Hayden and I met him, he has treated Hayden with the utmost kindness and respect.  His concern for him is that for his whole well being and for his future.  Of course he sees that Hayden has special needs and that he’s “different” from other kids, but he has treated him like a whole person since day one.  I’m pleased as punch that our doctor is brilliant and that he was smart enough to earn an Ivy League medical school degree, but this is stuff you DON’T get in medical school.  This is a heart condition; to see people as whole complete beings with their own special gifts and qualities that make them fully human, not somehow damaged or lacking in any way.  I’m 14 years into this life in disability and I’ve experienced first-hand doctors who aren’t interested in even seeing my child because he has Down syndrome:  our first ENT, when Hayden was just weeks old and had failed his first two infant hearing screenings told us, “We don’t really worry too much about a child’s hearing until they’re around two/two and a half”.  Really?  Bye Bye!!  Or doctors who don’t provide full care and treatment because he has Down syndrome:  when Hayden was five and had to have a central line installed in his chest to deliver some of the most potent antibiotics known to man due to catastrophic ear infections, our pediatrician refused to authorize an “epi-pen” should Hayden suddenly have an allergic reaction to one of the drugs (something is known and documented to happen on occasion).  So yes, we have personally experienced doctors who see the Down syndrome first and, maybe that’s all they see.  Sadly we are not alone.  Hayden is only 14 but I have heard so many stories from other families whose doctors have told them their children will not ever walk, talk or recognize family members.  I’m NOT making this up!  Welcome to 1933!!  Truly, parents, who are now my friends, have gone home from their first visit with their pediatrician completely devastated, not by medical reality, but because of what their doctors have told them will, or will NOT happen in the life of their child.  Like they know.

So thank you Mark Griffin for not only being a member of our family’s medical “team”, but for enriching the lives of many other kids with special needs in Our Town.  I have no doubt that you treat all your special kids with the same respect, kindness and hope in which you treat our Hayden.  I know there are some issues we must face in the near future, but I’m confident that with your heart and spirit for Hayden’s well being, we will get through them together.

Hayden sleeps after surgery


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