The Deep Dark Post

I am so frightened.  Sometimes I can’t believe this is my life.  Sometimes, the overwhelmingness of it all makes it hard to breathe.  I feel like someone is sitting on my chest.  I wonder how we will ever get through this.  I wonder if we ever will.  I try so very hard to put on a brave face, and smile and enjoy this life and each and every day because I know its what I am supposed to do or expected to do.  When really all I want to do is cry, yell, scream.  I am angry, I am angry that this happening to me, to Mike , to Patrick and  most  of all I am angry that this is happening to my sweet sweet baby girl.

I don’t know how to express these next feelings, other than  Mike I feel very alone.  I feel like no one else understands or wants to understand what our life is.  Not to say we haven’t been shown some amazing support .  Because we have, and were are forever thankful for that.  I mean more like there is a disconnect.  As I said I don’t know how to explain it.  It’s just lonely.  Which isn’t anyone’s fault if anything its my fault, I have pulled a way a bit recently and hope to face the world again soon!

Mike and I have had to make sacrifices because of the hand we have been dealt.  Those sacrifices come in various forms.  We have sacrificed friends, and sadly some family because they just didn’t get it and just couldn’t understand where we are and what we are facing each and everyday.  The old saying holds true, when tragedy hits, ( I hate to say tragedy, but I guess when you are faced with the unimaginable) you really do learn who your friends are.  It has been a huge awakening to us.  People who we thought would be there for us, surprisingly weren’t.  I was enlighten to learn  just how truly selfish some people are, and you know what we are better for it.  A LOT of our time is filled up with doctors appointments and such, our time is valuable and I would much rather be spending it with those that truly love us, so that is what we do.

Sometimes like tonight, or should I say this morning  since it is 3AM and even though I should be sound asleep (sadly, I don’t think Ambien is working any longer) I wonder how we will get through this, and I find myself willing the phone to ring, with Transplant on the other end, telling us they found the perfect heart for our princess, since the heart I gave her, the heart that grew inside me was not perfect and has failed my girl, has failed us all.

And even though the thought of transplant and all its associated risks scares me, the uncertainty of when this heart she has is going to stop working scares me more.   So once again, I am forced with not choosing the best most wonderful option, but the lesser of the evil. 

But, I know tomorrow will be filled with laughter, Mickey Mouse Club House,  lipstick, and potty dances!

I know that 95% of my day will be filled with normal happy mommy joys!   Until, its time for meds, or I catch a glimpse of her G tube and I am reminded that nothing about this life is normal.