Lee's Heart Monitor and My Monster Within

At one of Lee's doctor appointments, his doctor heard something in his heart that no other doctor had mentioned before in his 6 years.  She heard a murmur.  So she referred him to a pediatric cardiologist for a specialist's opinion.

He did an EKG and his own routine office examination.  He said he did hear a murmur, but that it was very mild.  But because Lee's heart goes nuts during a seizure (which is understandably common), he wanted to study it further, to see whether there was anything going on in there at other times as well.  And should Lee have a seizure during the test, they would be able to see exactly what is happening.  So he ordered a 30-day EKG.  30-days.  In a row.

To be perfectly honest, I really didn't expect insurance approval.  So when I got the approval letter in the mail, some 2 months later, I was completely shocked.  And a little...what?  Irritated?

Seriously, I was surprised at my initial response.  What was up with it?  I analyzed myself thoroughly and came up with an interesting conclusion about myself.  I'm sick and tired of having to research, and study, and probe, and experience issues with my children with disabilities.  It's not the research, or studying, or probing part, really.  It's the children with disabilities part.

When Tessa was first diagnosed with Pervasive Developmental Disorder: Not Otherwise Specified at the age of 3 1/2, I began my career in research.  I went from, "What the heck is THAT, and why does it have such a stupid name," to then transforming myself into the leading expert on her diagnosis, and all of her needs and nuances that gave her the label in the first place.  I ended up, when it was all said and done, conducting an in-service meeting with her teacher, teacher's aid, principal, school nurse, school psychologist, librarian, physical therapist, occupational therapist, and maybe even the lunch lady--I can't remember who all else.  Since the Internet hadn't reached most of American homes yet, I went to a center in Omaha that had everything you needed to know about every disability diagnosed to people of all ages, and I gathered information like nobody's business.  I accepted that my child had an issue, I learned about it, and I taught about it.  I owned it.

We soon discovered that she had an intolerance to petroleum-based additives (artificial colors, flavors, and preservatives), so I not only joined the Feingold Association, but I eventually landed the volunteer position as Regional Director, taking phone calls from parents from all over the Midwest, teaching them about the ill-effects of these chemicals in our foods, how these chemicals frequently affect people who have a disorder within the autistic spectrum and/or ADHD.   I shared with them about how I cook and serve foods for my family that are free of these additives.  Again, I owned it.

When Tessa's diagnosis was tweaked and fine-tuned and re-named Asperger's Syndrome as she got older and into her teens, I learned all about that name.  This time it was easier--the Internet had happened by then, and the more I learned about the disorder, the more I saw my daughter.  But still, I seemed to have some steam left in me, and I learned about it with zeal, accepting her disability with a sense of hope for her future.

When I first started feeling Lee's seizures within my body toward the end of my pregnancy with him, I prepared myself that we might be in for a challenging future.  When he had his seizure while still at the hospital at 2 days old, though terrified, I was relieved that it had been caught by a professional, and that he would be transported to a bigger hospital with the capacity to find out what was going on.  When they came away with no answers, and assurances that infant seizures are common and can lead to no problems in the future, I enjoyed the idea that sometimes things happen, but that the world doesn't always stop.  Sometimes things return to normal.  If only.

I don't know if it's my age, or if it's having come out of family crisis so recently, but sometimes I just don't think I'm into taking on new challenges.  It makes no sense that I'd be so defiant, given my makeup, and when I'm presented with a challenge I do meet it.  But with a lot less enthusiasm, fewer pep talks in the mirror, and with a more reluctant spirit, I'm afraid.

So the whole heart monitor thing seemed to irk me to my core.  Why put a 6 year-old through something as annoying as having 4 electrodes affixed to his torso, with wires hanging out and connecting to a lanyard dangling around his neck for something that may not even be there?  For a month.  Really?  And what about Raging Waters, and the beach, and vacation, and pool parties?

Is anyone on the other side of his equipment really collecting the data and getting a good read on the rhythm of his heart?  Will a 6 year-old keep all four electrodes connected to his chest for long enough periods of time that they are really able to get a consistent read?

We were told that when we are engaged in water play, or if it's bath time, all we have to do is detach Lee from his wires.  So when we were at Raging Waters and I got a phone call that Life Watch had lost it's transmission 3 times last week, I was pleasantly surprised.  They really were watching him.  I explained that on those three days when they had lost the signal, Lee had been playing in the water, and they were happy that that was all it was, rather than a problem with the equipment.

That's normal, right?  To just be tired of having to contend with things as difficult as children with special needs?  Few things are as painful.

Isn't he a cutie?  He thinks it's cool that he gets a cell phone of his own for a month.  No, he can't call with it, no, he can't play with it.  But he knows it well.  When it vibrates, he checks it to see why.  Usually it's because an electrode has come detached.  So he reattaches it, and then resets the phone.  He's such a champion.  He's so strong-hearted.

Me?  I suppose I'm learning about myself along the way.  Clearly, my annoyance is directed at the fact that there is yet something with my child that is needing to be tested, rather than the devise itself.  My lack of acceptance is a reflection of a form of denial on my part.

The working-on-my-attitude part is ever my challenge lately--stepping out of denial and into a place of acceptance.  But I work at it.  Hard.  I believe that since there is an issue with the little man, we need to pick at it until we find it.  I won't tire, and I won't lose heart.  But I will be aware that I really am tired of it.  The situation--not the quest for answers.  It's OK, I believe, to be tired of it, and even better that I know that I'm tired of it.

I own it.