Home is Where Your Whole Family is.

When I say I’m done and ready to go home, I don’t think anyone really knows what I mean.

“Go home for the night and get a good nights sleep.” “Get a nice long hot shower in.” “Just go be home for a while”

All well and good in theory when you aren’t here day in and day out. The things Jack has had to endure are the things I have to sit idly by and watch.. try to absorb some of the pain for him. The hurt, the terror, the sadness.

Just this morning, I had to walk him across the hall to “the room” for yet another blood draw. The CA opened the door to which Jack screamed and cried “no, no, no mama please don’t go in that room”. I held him in my arms on the exam table as the tears streamed down his  hot sweaty face and he screamed “please mama no, don’t let them cut me.”

A little while later, I had to sit by his bedside while he screamed that he was all done during an hour long echo. I pulled up every play doh surprise and funny cat video I could to try and distract him but it was useless.

He can’t even make it through getting his vitals checked without melting into a puddle of tears. All night long, he got a couple hour naps in then he’d be woken up for another torture session.

I went home one night for a “good nights sleep”. I cried all the way home. The further from the hospital I got, the more guilt ridden I felt. I collapsed into bed and worried about his night without me. I woke up and ended up missing a visit from his surgeon. Me going home accomplishes nothing.

So when I say we are done and just want to go home, I mean I’m done watching my son suffer. I’m done seeing the fear and pain in his eye. I’m sick of hearing him beg me to make them stop when I very well just can’t. I can eat the same cafeteria food all day every day. I can go days on end with limited sleep. I won’t be “home” until Jack is home. And that’s just the way it is.