Hard days

So I know this probably isn't the way to open after being too quiet for too long but I haven't posted because things have been hard and every time I have started to write something I found it turning real negative, I have always been honest but life is hard and I wanted to be positive and not post a bunch of negative stuff! I have realized recently that it is all life and it's our life good and bad!

So today I am having a hard day, not that you would ever be able to tell but every once in a while  things hit me harder than I want to accept. Today is a hard day, Micah is doing great and I slept well, sounds crazy right? Well for me it IS hard when Micah is having a difficult time with his illness, but I know what to do when he needs help. I hate to say I am used to all that is SMA because as a parent you never get used to this but I am accustomed to our routine .  So waking up to machines, alarms, tubes and wires is my normal.  

Today is a different kind of hard because I want nothing more than the one thing I will never have, I want to hold my son and feel him hold me back.  Sometimes when he looks at me I feel the love he has for me and I want to snatch him up and just love on him but it's never that easy.  I have to unhook what I can and be careful that I know where the rest of the tubes and wires are if I want to hold him and I will never actually feel him hugging me back. I can absolutely see the love he has for me when I look into his little face and most days it is so much more than a hug but some days I just want to actually feel his love.  A little selfish I know but honest none the less.