Monday, July 7, 2014


Im tired. Exhausted. Burnt out and done in.

Special needs his hard. Its hard hard stuff. Its exhausting and relentless. and sometimes ive had enough. I know there are moms out there that feel the same way Im feeling today.

I'm worn out of special needs....but not because of my child.... Because of you.

You. Insurance company that denies whatever they want whenever they want without seeing the whole picture.  Who seems to think they should decipher what can help my son and what is not medially necessary.

You. Medical Supplier that can NEVER EVER seem to get our order right. Always something missing or wrong. You, who doesnt look at my child as a child who depends on you to get it right. You, who seems him as a name on a paper....if even that, maybe just a number.

You. Doctor who just tells me to ignore things. They arent a big deal, but never bother to explain what is going on.  Who only wants to make decisions based on what will keep law suits at bay.

You. Hospital, who refuses to admit any wrong. Who refuses to see what ill trained and ill staffed hospitals can do to a child's life.  Who thinks a simple letter is enough to brush us off and pacify us. You, who asks us to blindly trust you and yet never does anything to deserve our trust.

I'm tired. Exhausted. Burnt out and done in.

Its not the wheelchair. Its not the needs every 4 hours. Its not the late nights and the hard talks.  Its not even the stares from others. 

Its you.  You are what makes our hard too hard to bear. Too much to handle and takes that last little bit of strength we have right out of us. 

How many hours must we spend on the phone fighitng. arguing, double checking and convincing. And when that battle is done we know there is just another one around the corner. just another time to do it all over again. Do you have any idea what that feels like?

I'm tired, exhausted, burnt out and done in.

But you haven't heard the last of me. 

because no matter what THIS is always worth fighting for!


Anonymous said...

Consider hiring a certified nurse care manager to do this fighting part of it for you so you can focus on caregiving, the needs of the rest of your family, & your own needs so you can continue on. Consider hiring someone to develop a life care plan for this precious child too. Then medical needs are documented by a professional trained to do just that - projecting out the current and future needs of your child. Your child might be eligible for other services; between the (right) nurse and the life planner, they'll be able to point you in the right direction and walk along side you. With so many 'you's' running in your life, these action steps might just put you on equal footing. Expensive? Not necessarily if you hire only what you need. Perhaps your family & friends could hold some fund raisers to help pay for these services. God bless you.

Kimberly Rae said...

This made me cry. A parent shouldn't have to fight for the needs of their child. I wish there was a way to fix it and don't even pretend to have any ideas. For now, I hope it helps to know that, knowing how vital it is to have an advocate in the medical world and how isolated and forgotten it feels when there isn't one, your child has that advocate in you, and every time you intercede for his needs, you are showing him Jesus. And us too.

Anonymous said...

Please know you are not alone. There are many of us. I wish I could hug you like I need to be hugged when I'm in that same space.