I am not okay.  I have not been for a while.  I am so alone.   I have no one to talk to.  No one to help with Logan.  No one understands how I feel or what I go through.  These past few weeks have been crippling.  I hate that my child was born with cancer, I hate that he now has a brain injury from where the tumor was. I hate that he cannot eat by mouth and cannot talk.  I am hysterically crying as I type this.  I am exhausted, physically, emotionally, and mentally. I hate the fucking holidays…my kid can’t color eggs or go on an easter egg hunt.  I am sick of being nice and putting on a front that I am strong, and everything is okay because it’s not.  This is me; this is how I really feel and it fucking sucks!  Yes, my son is amazing, he’s a miracle and has overcome every worse case scenario but that doesn’t mean it’s easy…. it’s not!  I do not want people feeling sorry for me, I want people to have empathy and offer help.  Whether that be an ear or sending wine or offering to watch Logan or give me a hand for a couple of hours.  I’m just trying to let all my feelings out.  This isn’t directed toward anyone and of course my husband is amazing.  But I’m the one that handles everything (yes, I’m a mom and like to be in control).  I schedule all the doctors’ appointments, therapies, evaluations, babysitters, etc.  It’s on me.  Luckily, I have a flexible schedule where I am able to do all these things but I’m exhausted.  I just want my son to be normal.  I just want him to eat and play and talk and run like every other kid.  This is the worst I have felt in a very long time and I hate it.  Every four hours I have to stop what I am doing to feed my son via his G-tube, most times it’s a straight up fight to get him to sit still while feeding him.  He will bite, hit, pull my clothes or hair the whole time.  I can’t let him just go outside and play with other kids in fear of him hitting or biting or head butting or pulling their hair.  He’s super smart and definitely understands more than we think but the part of his brain that is injured regulates his impulse control which is where these issues lie.   I can’t send him to a regular daycare because of these things.  I can’t find help to come into the home because (1) I don’t trust people (2) Covid is still a risk and (3) the hiring pool is limited.

At first I wanted to write this to get it out, then to share but now I am afraid to share because for fear of being judged.  Oh, she’s just looking for attention.  Oh, she should just be grateful her kid is alive.  Or…he’s so cute, he beat cancer, he’s a miracle.  Just be happy….blah, blah, blah.

I love my son, I’m blessed and grateful to be able to be there for him as I am. But this doesn’t make it easy, it’s hard, it’s exhausting and I’m fucking burned out!

I’m allowed to have these feelings and I will get through it as I always do but I will NEVER get OVER it.  We don’t plan for tragedy in our lives whether it be an illness, loss, etc. We can only do our best and put one foot in front of another and push forward.

You are either beside me or behind me helping me move forward.  That’s all I ask.  Patience, empathy, prayers and love.  

Until next time….