A view from my seat

So most of what I write about is updates on Cameron’s health and what he has been doing and what our family has been up to.  Tonight I write to you from me, from how I see things on a daily basis as the mom and what it means to be a parent of a child that has different needs than most others.

Most days go just like yours, with a few extra steps added.  So you have an 11 year old, he gets himself dressed, I dress Cam.  He feeds himself, I prepare Cam’s breakfast.  He packs his school bag ensuring everything he wants is inside, I pack Cam’s and it never fails I am in trouble for not packing something he “desperately” needed that day!  So maybe we wake up a little earlier than you, maybe it’s a bit more to do, but in our world, it’s all we know.  I don’t think twice about what it takes most days……then someone who doesn’t know us all that well meets Cam and says, “I bet it’s hard getting everything done with Cam everyday!”  and I reach my arm around and give myself a little pat on the back because in that moment I realize I have adapted well and don’t about my life being any different than yours.

So that’s most days…..then there are days like today when it seems that as hard as you are trying to make things “better and easier” it seems that all the choices you have made are making it more difficult.  I have dedicated the majority of my time and energy to my job for the last 8 years of my life in hopes that I would climb the corporate ladder and end in a place that allowed me the best of both worlds….to make enough money to be content and have time with my family.  Well, when I realized that my dream chasing was causing me to miss out on so many memorable moments with my family I decided I would make a change!  I had an epiphany at dinner one night, thanks to the help of my husband, that I should be a paramedic.  You see, I’ve always wanted to work in the medical field but have never had the time to dedicate to school, so this was perfect.  I can go to school, take a step down at work affording me the ability to pay my bills and the time to go to school.  Perfect right?!  Not so much.  My decision to step down landed me a sales job with a not so great pay rate….not exactly what I was planning for.  I ended up working in a store close to home, which was a refreshing change after 8 years of commuting, but the pay was not enough to sustain Cameron’s medical bills and our regular monthly bills.  Then, an opportunity presented itself that seemed so GREAT!  I interviewed and was offered a job at a new store that I felt was a great fit for me.  I would be back to a commute, however it was not as long, pay was better and the hours….OH BABY……love them!!!  So I give my 2 weeks, Cam is super excited because my new hours mean no 80 hour weeks at Christmas, every Sunday off (which for Cam means no babysitter! )  Things were looking great………..and then (said in the voice in movie dude, where’s my car??)

Meanwhile we have been trying to work with our lawyer and the bank to get Cam a home that is accessible to him.  Right now he cannot ever go to the bathroom by himself or get around in our house.  He relies on us and our sitters 100% of the time for normal activities of daily living.  I have spent an enormous amount of hours fighting with the insurance company to get home health care approved to no avail.  We have spent the last 6 months trying to work with the bank to get out from under our house the right way, to no avail.  The saga on this continues……

As far as me having what I like to call a “mid-life change” (crisis seems to be too dramatic and since I’m only 35 I need an out when I go through this later) I feel like we have gone over every scenario numerous times , keeping in mind that I have held medical insurance for Cam that was really good, I’m feeling great.  Sunday rolls around, it’s my last day and Tuesday I start my new job! WOOO HOOO!! right?!   Not so much, Sunday night we decide to call in to the new insurance company just to be sure we choose the right plan.  While we gained some insight as to which plan we need, the most expensive of course, we find out some seriously bad news.  They will not cover any of Cameron’s feeding supplies…….. seriously, how is this even right????!!!!  It’s not like we chose to give our child a G-tube and force him to take food through it!  Then you see I realize, my life is not so ordinary…. ….and reality kicks me in the *!**!@*^#!.    Most people change jobs and take into account how much they will make and the schedules they will work, in our world, it’s all about insurance.  What will they cover, what is our maximum out of pocket, are his dr’s covered.  All this time I thought we had covered all out bases, dotted all of our I’s and crossed all out T’s……clearly not so much!!!!

So tonight as I am making dinner, stressed, nervous, anxious, worried, you name it I/m feeling it.   I look over and see Cam , happy as a clam, playing on his computer and think that no matter what, I am the luckiest person in the world!  He has no idea what we have to worry about, but he has his own struggles and yet, he is so HAPPY!  I guess maybe we all stand to learn a lot from that .  Even me, I always feel like I cope so well and yet when I look at Cameron I always feel like I can learn something about how to live my life.  I know our life will never be what some of you call “normal” or may even think of as normal, but it is what it is.  And for now, I am happy with the choices I have made because I know in the long run, when I get past the insurance issues and the money issues, that happiness is really what is important.  I could work myself to the bone in order to make ends meet, but at what cost……..

Honestly, being home more and watching Cam smile doing what he loves to do is worth more than any amount of money in the world!  And learning the biggest life lesson ever is priceless, literally

Be happy with what you do and the choices you make and you will be the best YOU, you can be!

 

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