So this post isn't about my voice, it's about Jennifer Lawler's. Via Facebook I stumbled upon this blog entry For Jessica
. It's long and gut wrenching and if you have a sick child it will pull at your heart strings and solidify every decision you have ever made in your child's life.
I've spent the last month not blogging (obviously) and really engulfing myself in other parts of my life. I conveniently 'forgot' about Henry's disease and was enjoying not worrying about it. For those of you in the ARPKD world you know exactly what I mean. Where you go through fazes of accepting the disease, wanting to conquer it, hide from it, destroy it or just plain forget about it for the day. However this blog post made by Jennifer reminded me of everything Henry has been through and how despite how normal I try to be our normal just isn't normal.
So I am recommitting to sharing more of my life, reconquering ARPKD and re-finding my voice. What I took away from the post For Jessica was that tomorrow isn't promised. That it's okay to do things your way, with your child and not care what anyone else says (as lawler says screw them). Unless you have almost lost a child, and have traveled a road where your child's health isn't guaranteed than your comments or advice unfortunately don't hold their weight in gold.
Regardless of what anyone says I will always squeeze my son tighter, I will always let him live a little more freer. I'll let him do whatever makes him happy, I'll let him sleep in bed with me as long as he likes. I'll always look at him and smile at how he's grown and I'll always shed a tear when I think of how far he's come and how much further he still has to go. No matter what happens in my day to day life there is always that part of me that remembers almost losing my son and a part of me that fears the day when his kidneys will stop working.
So with teary eyes and a heavy heart I will end this post and start my nightly routine where I give Henry his blood pressure medicine, gently stroke his hair, fix the blanket he has kicked off his legs, spend a moment staring at him sleeping so sweetly, take a deep breath and smile.