I thought grief would be one of the hardest things I’d ever do…….
Seems crazy to me to say that out loud...that my husband dying in front of my face, and the aftermath that ensued would be less hard then what I am facing now. But, it is because of that, I think, that it makes this even harder....the knowing.
This week, my oldest son Kaleb, is having heart surgery 1 of 2, to help correct the same heart he inherited from his Dad. Both of my boys, now 16 & 12, have HCM (hypertrophic cardiomyopathy) which they inherited from their Dad and why their dad died. Noah was first to be diagnosed at the age of 3, just a few short months after Vince died. That was a hard blow and I don't think I slept for at least the next 2-3 years a whole night without racing to his bedside to see if he was breathing (their Dad died in his sleep while I was in the shower). Since day 1 I have been begging and pleading for the doctors to not let what happened to their dad happen to my babies...I always say, yes I lost my husband but I WILL NOT lose my kids, that I won't survive. Well long story short, Noah is still "too small, still too young, and not symptomatic enough" to get an ICD (internal cardioverter defibrillator) that if it had been in their Dad just might have saved him. So I mustered through...hoping, praying, and sometimes pretending it's not real....just to get through the day..and the night... with Noah. Fast forward to last year, July, Kaleb who has been cleared of HCM since birth, gets diagnosed too at the age of 15. He too is "too young" and "not symptomatic enough" for an ICD. Now 2 boys to worry about dying. Not sure at that point how much more I can take. By February 2020 he is in the ICU, his heart does not respond well to his teenage lifestyle of caffeine and exertion on bikes and skateboards. Come July, he has an arrythmia, and his doctors decide he needs an ablation to get rid of the arrythmia, and in fact they recommend putting in an ICD.
That brings us to today. Kaleb has been my buddy since day 1, the kid that is sassy, yet happy like me. We have been through so much together in his young life....why I am relieving the moments of his last 16 years recently I don't really understand. Tomorrow they will put probes and lasers into my baby's heart...cause arrythmias....and then try to get rid of them as they occur. I am SO SCARED. I have not been prepared for this one like all the others. I am well versed in all things ICD's, their implants, their meds...this one scares me. He might not ever wake up and I am the only one responsible for this..the only one left to make all the decisions. I have to sit alone at the hospital because we are in the middle of the pandemic, just like I sat alone at the hospital that early morning of 12/11/10 with my dead husband. I'm currently trapped in feelings of what if's, but this is what parenting is, this is what parenting chronically ill children is. You worry, you stay strong, you breathe, you go forward....because there is nothing else to do.
You better believe I have been using all the oils and doing all the things, performing reiki on myself and Kaleb, meditating, yoga, eating comfort food...anything to get us through these last few weeks as tomorrow presents itself. Whatever happens I know I do everything I can to protect my boys and make all the best decisions I can with the best advice and choices available to me. I have a big network of loving friends and family and I know Vince will be with him and I.
Challenges make us better people.....I hope one day when I'm really old and my boys take care of me they know how much of my heart is dedicated to them.
