The Dance of Acceptance

I never expected the feeding GI issues that would follow with CHD. I was told about the potential feeding problems but not this... not what my treasure lives with day in and day out.  As Henry's mom this roller coaster is one with many loops and turns and places where it levels out just long enough to catch your breath. This is the roller coaster of acceptance. Today I was texting with one of Henry's nurses and another heart mom I was explaining how difficult it is to come to acceptance of where his little life is right now.  How one day feels so hopeful to the next feeling utterly defeated.

Slowly as we wade through these waters I am seeing that acceptance doesn't look like one would think.  Shock, Guilt, Why? Anger, Sadness / Loneliness and this fuzzy word Acceptance...
I think I have felt all of these things a billion times over in no order and sometimes all at the same time.
Guilt that we can't figure out the cause or the cure. Guilt that a baby has vomited daily three, four, five times a day sometimes more and still is the most happy child.
The Why? questions, I have laid in bed awake for hours asking this question. The problem with this  is it can rather quickly spiral into sadness and anger.  It's completely normal to want something or someone to blame when your child has complex needs. From being angry at yourself, God, doctors, friends pretty much everyone around you sometimes can feel your frustration. The thing about anger is your truly never upset at the person receiving it and it all boils down to feeling helpless to change the situation for your child.
Today after two great days Henry has been vomiting like he always has. My heart was heavy with sadness today.  He didn't seem to notice the change... retching, vomiting cycles. Wiping up his little chin and drying those teary brown eyes he was off playing.
Today as I sat on my sofa in a daze watching the kids play together I realized there is no one path to acceptance,  just as there is no time on it.  Acceptance of your child's medical needs will come and go. You may find you have achieved acceptance on certain aspects of your child's condition while others leave you breathless.
Some days are simple and for moments you get to forget, and some days are painful and difficult. And that is exactly the roller coaster of mothering a child with special medical needs. Heart moms like all moms that deal with big stuff need to be given permission to feel it all, that wide range of emotions that seem to be inevitable through this journey. If you know a mom that is dealing with life threatening medical needs with her child be sure to walk gently in her life.