The beginning? The end? Middle of the road?

A few days ago my kids genetic tests were sent out to the lab. I should know in 4 weeks who has Brugada and who doesnt. All 5 kids were checked out by electrophysiologists. All 5 so far are asymptomatic and have normal EKGs. That doesnt mean much because Brugada is a problem later in life. Its great that,as children, they dont have to be burdened but it doesnt mean things wont change with age.And problems in childhood are possible but not probable

So as I shipped out the genetic kits to the lab I had mixed feelings.I felt like I was at the end of this long road.But I felt like I was at the very beginning. And at the same time felt both ha ha!

I felt like it was the end of the journey because I was diagnosed, my ICD is in place, Im healthy and moving on with my life. I will find out if any of my kids have it but in the mean time they only need to be evaluated every 6 months with an EKG. No ICD or intervention needed at this time.So in essence, all of us with Brugada in my house, will just spend time here and there at the doctor with, God willing, no emergencies. I will very soon know what Im up against, who has it, who doesn’t and can move on once again.That is why Im feeling like Im wrapping up the end of a night mare. But not really…

Technically its the beginning for myself and my kids.Yes, I have an ICD but symptoms and events can be on their way. Yes, Ill be safe but it doesnt change that something could be coming. My kids, I could only hope none have Brugada. But if some do,although its just routine visits, what IF they turn asymptomatic? What about the trips to the ER to get an EKG every time they have a fever (as ordered by the doctor) Will they need an ICD in childhood at some point? What if they are adults and need it but dont want it? From now on I have to tote around an AED (automated external defib) IN CASE they have symptoms. What will that be like? So this is why it feels like the beginning of a life long journey…

So is it the end or the beginning or middle of the road? Or a chapter done in a book and Im starting the next chapter? Day by day the answer changes and my feelings about it…

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2 Comments (+add yours?)

  1. Carla Di Giorgio
    Jun 07, 2013 @ 13:05:05

    si tesoro, i sentimenti cambiano e nel mio povero cuore sento l’incubo che non ha fine….. mai nella vita ho provato dolore piu’ immenso….solo lacrime e dolore per il mio bambino….. auguri per i tuoi figli, dai loro un bacio per me. a te Alicia, un abbraccio. Carla.

    Reply

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