What you see isnt always what you get

When you see me, you see me just as a young mom being a mom.  When you see me as a parent if you are a teacher you see me as another parent in the ocean of parents.  When you see me in my pj pants and tshirt, you see me as a mom either lazy or laid back.

What you dont see...

You don't see a mom that after just delivering her first born pain.  Pain beyond the pain of giving birth.  When Rome was 2 days old, every time someone would touch him I felt in pain.  It hurt for others to touch him.  I called the ER.  I told them he was purplish and breathing hard.  I was told to wrap him and feed him anyway.  I didn't.  I took him to the ER.  I was told he was dehydrated and it was my fault...  MY FAULT.  He was med flighted to Madison.  After a day of tests, he had a VOGM (vein of galen malformation).  NOT MY FAULT.

Most babies not diagnosed soon enough to survive.  I was then told surgery gave him 50% chance to survive, no surgery 0% chance.  I remember saying... no tears "Can you give us a moment?"  I dropped to my knees and begged for him to stay... I loved him, he was my baby, I would give my life for him.

Some kids cant be fixed with VOGM...  After many years and 11 procedures, my kiddo was fixed.  He is here.. He has seizures... he has learning issues.  Going from fighting for you kids life to being told there is a new struggle is exhausting.

When a teacher says.. well they didn't get better at this... I think... hes here thats enough.  What did he do better?  When you see me and give me a numb analysts of my kiddo I just was told this is the best it will get...  When you see me and Rome and say hes doing great.. another kid just called him the "R" word.

He didnt choose this, I didnt choose this.  He is an amazing happy polite little man.  Please dont ruin it you cruel world.  When you see me you dont see the mom staying up night after night sleep deprived worrying about their kid.  You dont see a mom who the day before was told there is hope to be shut down.  You dont see the mom that tries talking to multiple "specialist" asking what can I do?  You dont see the mom fighting who eventually cant fight and all we need is someone who gets it.  Someone that cares for their kiddo.

When you are faced with your own childs mortality.. you dont think of anything else.  For years I went through it and never realized the struggle ahead til a boy in Kindergarden called my son a "retard".  We are already fighting an uphill battle..  we just need help, we just need kind words.