Tuesday, May 21, 2019

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean's story and hopefully inspiring some awareness about organ donation, but I stopped writing here when things calmed down a bit in Bean's life (and consequently my own).  Obviously, this was a bit of a coping mechanism with me early on and I felt like I didn't have much to say if I wasn't writing about medical procedures or milestones or such.  But, I've recently realized in being in some online groups for pediatric heart transplants that it is equally (maybe more so) important to mark those "normal" times.  Times when we go years without hospital stays (knock on wood).  Times when she runs 5Ks with Girls on the Run for multiple years.  Times when although she is taking medication twice a day still, it is easily transportable and doesn't change much over time.  These are the good times.  And they should be marked and remembered.  And they should be here for those who are just starting this long and scary process that often left me in a state of doubt. 

I don't have any doubts anymore.  We absolutely did the right thing.  Despite the fact that she has a leaky valve due to a catheter running into her tricuspid valve during one of the biopsies.  Despite the fact she has a pacemaker because her heart started some irregular beats a few years ago (perhaps because of that leaky valve).  Despite the days, weeks, really months we've spent in a hospital room, she is healthy and happy and absolutely amazing.  Like I said, she does 5Ks with Girls on the Run.  She does gymnastics and loves it.  She is an active Girl Scout and is in 4H.  She has tons of friends and no real restrictions.  She doesn't even get sick when we get sick nowadays!  She is the healthiest immune-compromised person I know (I don't know a ton of them, but she is healthier than a lot of the non-immune-compromised people I know).

I, on the other hand, am a bit of a basketcase.  I have realized only recently that I have been in a sort of PTSD fog for the last 10 years.  I was in survival mode and although I've made it through and even thrived for some of it, I can't remember much of it and often lack a total awareness of what I'm feeling and experiencing in life.  It is a strange feeling, moving through life without really experiencing it fully.  I just feel a little lost.  Sometimes it isn't as strong as other times, but it is always there.  That feeling of not really knowing what is happening or what will happen next.  And we've been on a relatively straight road for the past few years, but it is still there.  Every time she looks a little pale.  Every time we go to the heart clinic for an appointment.  Every time something happens that brings a bit of the unknown with it, I am in that slightly panicked but can't bear to feel the panic state.  Which makes no sense, but its the only way I can describe it.

So, for those parents out there who are looking at the beginning of this road and wondering where it leads, it leads to amazing things.  It is not an easy road.  There are constant worries and concerns (recently it has been measles scares since she can't be vaccinated for that), but there are also constant joys and celebrations. 

So, I'm back.  I'm back to record the good, the mundane (which is good for us in transplant land), and the struggles (because they are still there, just smaller and much more manageable).  Hope some of you rejoin me! 

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...