What defines you?

I really tried to hold off as long as I could.  I feel like half the time on this blog I am talking about sickness (in my defense more than half the time someone is sick), but I really didn’t want to keep having to bring it up.

Jesse mentioned last week that Oliver was sick.  And boy was Oliver sick.  I would say this was the first time in his life he really battled something stronger than a weak cold.  He was out of service for 8 days, out of school for 5 1/2 days, had a fever for 6 days, went to the doctor twice and the hospital once (for a chest x-ray – came out inconclusive).  We had plans to head to Nebraska last weekend for some fun Mom and Dad time while the kids stayed with grandma.  Except everyone was still too sick to go.

I waited all week and finally last Friday at noon came the dreaded call from Bella’s school, the one that said “Bella’s sick she needs to go home”.  And then Friday night I started to get a fever.  The weekend was alright, kids were still sick, we took it easy and they napped a lot.  But for the past 10 days Jesse and I have not been getting much sleep as it’s a constant rotation to help the child that can’t stop coughing, crying, or has a temperature.

Oliver’s first full day back at school was today.  Bella was out of school yesterday and ended up coming home early again today.  And again tonight, I am getting a fever and burning up.

So I’m tired, sick, feverish, emotional, and my body just aches.  I need help.  Isn’t that what we are supposed to do…ask God when we need help.  When we get to the point we throw up our arms because we can’t fight anymore…and ask for help.  This is me asking for help.

I started reading a new book today.  It’s a young adult fiction book, and I am finding it a great read.  They are turning it into a movie soon.   It’s called "The Fault in Our Stars".

I’m not sure if it’s because I am emotional and tired right now, but I am finding that this book is bringing me to tears at points, and I am finding similarities between the main character and myself.

The main character is a 16 year old girl who is fighting/surviving cancer.  It was thyroid cancer but had moved to her lungs and now she has to carry around an oxygen machine everywhere she goes.  She is not able to go to normal school anymore because she is too sick.  She feels that she can’t have her same “normal” friends anymore because they don’t know what to say, and her cancer is always there.  She feels that everyone always stares at her because she always has the oxygen machine with her, the visible sign of cancer.

And in a weird way today I felt that having a special need’s child like Bella, is similar to having cancer.  It might be a strange and bold statement, but the parallels are there.

As soon as Bella was born, my life revolved around her.  Just like cancer would sweep in and take over, Bella takes over my world. 

I do not, nor can I ever have what I would consider a “normal” life, or even what I dreamed/aspired to do when I was young. 

We can’t do “normal” activities as a family because Bella can not participate. 

We have friends, “normal” friends, but it can be hard to keep up the friendship when either you always have to go out without your kids, you try not to bring up your kids because it’s a downer, or if you do an activity with your kids you are always the outcast.  As in we are always easily spotted as being different and dealing with a special needs child. 

We don’t want to stay home and be recluses, but you can see how the tendency might creep up when doing any activity takes twice to three times the amount of work.  Just like cancer it’s one of the labels you are always stuck with and always judged by.

I often think when I walk into a room people are thinking – “Oh there comes that mom, you know, the one with the special needs daughter that can’t walk or talk or do anything”.  The child who is over there making strange noises in public, with her head down and to the side.

Don’t get me wrong, I am not saying people are mean.  In fact most people are wonderful and nice.  But let’s be honest….it’s still a label I will live with for the rest of my life and Bella will define me for the rest of my life.

It’s up to me to not let what defines me bring me down.  And most times I can do that.  But there are times when it gets hard, when I do feel sorry for myself, when I do allow myself to wallow in pity.

I should probably take this hot bod to bed (because I have a temperature and am burning up, not because I think I am good looking), and get some precious few moments of rest before the coughing in the house begins again.