The Truth Hurts Sometimes

Echo at Dr Wright's Office in Sacramento

It has been a while since I've posted on my blog and there is much to update. I have "written" many posts in my mind but putting my thoughts on paper make them permanent and there's no denying I've had them once they are out. 

The last time I posted, Nicholas was home - recovering from his last PA banding surgery - and I was home with him, tutoring him from the school he was missing and trying to keep his spirits up. Truth be told, I found myself kind of sinking into a black hole and really suffering watching him suffer and knowing that there's nothing I can do except love him and advocate for him as we try to 'fix' what's broken with his heart. It was during this time while I was away from work, and it was mostly just him and me, that I had one of those ding,ding,ding! moments. I realized that unlike other diseases, such as some cancers or type 2 diabetes, there is no "we're going to beat this!" or "I'm changing my diet and exercising more so I can beat this!". I had a very defining moment where I realized that congenital heart disease could win this battle and I could lose my son. 

It is something that I acknowledge now...but I cannot wrap my head around it. Knowing that Nicholas having an eventual Double Switch will not actually FIX his heart. Knowing that everything we have tried to do to prepare him could backfire and he could struggle even more than he already does. Knowing that there are random complications in the operating room. Knowing that his heart could give up and he could need a heart transplant. Knowing that he might not have a match if he needs a heart transplant. Knowing that he could enter the gates of heaven before me and that's not how things are supposed to be.

I am going to start from where I left off and attempt to explain everything that has transpired since April of 2017. Here goes: