Robot Mom 2.0

In order to fully understand this post please go back and read my blog Part Mom/Part Robot sort of.

My last surgery, I was told the new batteries they were placing in my SCS’s (spinal cord stimulators) would last me between five and six years. That was last June. This past Friday I found myself back in the surgery room undergoing the knife one more time to replace the batteries. Where did my five years go?

Dealing with back pain/neck pain has become part of my normal. I do not complain about, it’s just part of who I am. Maybe it’s because I don’t complain that people do not see me as someone who suffers with a chronic pain. Just to clear things up not all illnesses or health issues can be seen. Just because someone is not in a wheelchair, or using an oxygen tank, or someone is not using crutches does not mean they are fine. Many chronic illnesses or pain issues can not be seen with the naked eye.

It is much easier to say I’m fine when someone asks how I’m feeling than to actually go into what all hurts. It’s been my experience that when most people ask “How are you doing?” they are just making small talk they don’t actually want to know how your doing. The truth is most days I am fine. The SCS’s have really made it possible for me to keep a somewhat normal life. But there are days I hurt, days I can’t move, days I wish the accident never happened. On those days I wish people could really see what’s it’s like for someone to live in constant pain. Days like today.

A few months ago my generator started saying it was time to replace my batteries. I thought there had to be a mistake so I called the doctor and scheduled an appointment. When I went in I was met by the doctor and the programming team. They laid me down and ran the scans to see what was going on.

They adjusted the programs and reset the batteries and sent me on my way. That lasted three weeks before my unit started flashing replace batteries soon. I called the office back and scheduled yet another appointment. At this appointment it was confirmed that my SCS’s were in fact dying. Both batteries were going bad, just my luck. After father investigation it was determined that my spine is covered in scar tissue (countless surgeries will do that) making it hard for the electrical current to get from the leds to my spine. This was making the batteries work over time to get push the current through in order to keep the SCS’s working. That in turn drained the batteries, which is why my five to six year battery life only made it a year and four months.

So Friday I had yet another surgery. New larger batteries were placed in my units (one on the left side of my lower stomach area and one on my right side lower back area). They worked on my one on my back first then flipped me over and replaced the one in my stomach. In a few days I should be back to my normal but today I feel like I’ve been hit by a truck.

This will fix the problem short term but there is still scar tissue around my spine so another, more complicated, surgery will be needed down the road. Sooner than later. It seems to be never ending.

But even with all the downsides I am thankful. I do hate surgery but because of it I am still able to walk. The scars will fade and the pain will subside. I am thankful because with each passing year the medical community gets closer to finding a way to permanently fixing those in chronic pain. I am thankful because with my SCS’s I am no longer on pain medication. I am thankful that I am still able to be the mother and wife God planned for me to be. I am thankful because I still believe in miracles and one day I will be healed. And oh what a day that will be.

From our beautiful chaos to yours don’t be so quick to judge others. Just because you can see their illness or see what causes their pain does not mean it does not exist. The strongest people I know cry behind closed doors in pain so they don’t worry those they love.

A Salute to My Favorite Veterans 

In honor of Veterans Day I thought I would talk about a few of the finest men I know.  I am honored to have/had them all in in my life.

I have several uncles that have served our country proudly.  Two however I would like to tell you about, my uncle A and my uncle L.  Both of these men helped shape my life in more ways than one.

When I was younger I belonged to a clogging (an Appalachian form of dance) team.  I along with my brother, mother, and father all danced on this team.  So did my uncle A, aunt and cousin.  We practiced weekly and on most weekends we performed at different festivals.  I loved those days.   Our two families are close thanks to those times.  We also spent many of our “free” weekends at my grandmothers and if we were there you could almost bet my aunt, uncle and cousin were there as well.  In fact most of my childhood memories include them.  I would give anything to have him spin me around the dance floor one more time to one of our old routines.

Now my uncle L is on my dads side.  He has a love for motorcycles and for Jesus.  He is one of the sweetest men I know.  He always has a kind word to share and he makes sure to tells me just how much he loves me every time I see him. When I was younger and still lived at home he, my aunt and their two kids lived less than a mile from me.  Family is everything to him.  And I will never be to old for one of his bear hugs.

I am blessed to have had both of my grandfathers serve our county as well.  Both Papaw W and Papaw L served during World War II.  Papaw W was in the Navy and Papaw L was in the Army.  My Papaw W always had a story to tell and made sure we knew who the greatest hunter/or fisherman was. Later in life he would quiz me on Bible verses or share a passage that he thought was interesting.  My Papaw L was my rock when I was a little girl.  I spent most of my early childhood days at his and mamaw’s house.  Having them as our neighbors made it easy to see them daily.  We would pass the days by working in the garden or playing games of Canasta.  I would ride in the back of his old black Ford pickup truck to the store were he would buy me a soda and candy bar for under a dollar.  Those were the days.  I would love to be able to hear just one more hunting story from Papaw W or to be able to play one more game of Canasta with Papaw L.  I know they both watch over me in all that I do.

I even married into a family that has served our country with pride.  My father-in-law was in the Air Force and my husband was in the Army.  My father-in-law fought in the Vietnam War.  He is the best when it comes to being an all around great guy.  From the first day I met him he welcomed me into his family.  He showed me how to eat chicken wings and helped introduce me to NASCAR. He is the first person people go to when something needs done.  He works with his church making sure all the local kids have food to eat through the back pack program and he is always the first one to offer to help if something comes up.  He would give the shirt of his back if he thought someone needed it. He is also a pretty awesome papaw to our little ones, just ask any of them.  When he says “I love ya girl.” I know he means it.

My husband, my hero, my rock, and my partner.  He fought for our country in Operation Iraqi Freedom.  He always has my back no matter how crazy things get.  He works hard to provide a good life for the kids and me.  He opened his heart up to foster care when many others would have said no.  He makes me happier than I have ever been. He is my shoulder to cry on, my go to guy when I need good laugh, and my stealer of the sheets at night.  My favorite place in the world is in his arms.

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I also have many cousins and friends that have served the Red, White, and Blue proudly.  To all of them I say THANK YOU!!!

The point of this blog is to show that our Veterans are not nameless people or people without faces.  Our veterans are everyday people.  They are someones grandfather, father, uncle, cousin, husband, son, daughter, aunt, mother, or grandmother.  They are real people with real families yet they choose to serve to give us the freedoms we have.  They sacrifice so much to give us opportunities many Americans today take for granted.  Freedom is not free.  It comes with a cost few are willing to pay.

So today, as well as every day, if you see a veteran thank them for their service.  I am honored to be part of a family that has served our country over the years.  To all those that have served or are currently serving I salute you.  Thank you for being you.  And God bless you.

 

The X Factor: School Life for Our Autistic Son 


I attended my first IEP meeting for this school year for wild man a few weeks ago.  As a mom I want the best for my kids. I want them to have a great education and be able to succeed. As a mom of an autistic child I want these things and so much more.

 The meeting went well. His new teacher, OT, speech director, principal and his teacher from last year all love him.  Which makes me feel like we made the right decision on the School.  We went over his daily schedule and how we could make it better for him.  This year he will have his major subjects in a regular classroom while his afternoons will be spent in the classroom equipment for special needs (this is the classroom which make us choose the school in the first place). Change is hard for him but I want what’s best for him.  

The meeting was filled with comments like “he is doing so great” “he is working so hard” and “he has come a long way”. All of which made me smile because he is doing great and working hard. And he has come a long way, a very long way.  It’s in these moments that I get lost and almost forgot he is autistic.  Everyone bragging on him and telling funny stories about things he has done.  I love seeing other people’s faces when they talk about him.  They just light up he has that effect on people once they take time to get to know him. 

But then there comes the reality.  Take this work page for example.  He scored a 3 out of 10.  I know placing him in the regular classroom is supposed to help him build social skills and help him become more independent.  But he is so lost when it comes to the actual school work.  I don’t want him to be overlooked or just passed through because of his disabilities. I want him to have a chance to learn and to grow just like any mother would.  I know many of you are thinking “it’s just one paper or he is just in 1st grade” but that’s my point. This is just the beginning. What happens now and how he is treated will affect the way things go from here on out. He does not bring many graded papers home but when he does most notes are “he tried hard” At what point will he become completely lost and what nothing to do with School? Will he always be this happy go lucky boy or will the struggles become to much for him the bear?  I worry because it’s my job to make sure he receives the best possible education he can receive. I worry that the other kids will start calling him names or talking about him because he does not get the answers right.  I worry constantly about how his peers receive him.  

But then my son does the most wonderful thing.  As I look at all the X’s on his papers and the comments my son, my beautiful intelligent son points at the papers and says “look momma I got this one right” and smiles great big.  Even in a world full of negativity and large red and green X’s my son only sees the good, he only sees the beauty. As his mom I worry about him in this crazy world we live in.  People are so cruel to each other and I am scared that the things that make him unique in Gods eyes will get him teased or even hurt in this world.  But God has given my son a unique way of looking at things. He only sees the good in people and in things.  He does not notice those that stare at him or say hurtful things about him. I am truly thankful for that.  As his mom I need to try and see the world the way he sees it.  I need to find the good.

So yes we celebrate the three right answers, because a year or two ago none of this would have even been possible. We celebrate that he can now write his name and that his teacher said he is now sitting at his desk up to three minutes at a time. (This is huge for him) We celebrate that he has even sat at the dinner table with us a few times this month and we were able to have dinner as a family(and this is huge for him). We celebrate the red and green X’s because they show us progress. He is moving forward in all areas of his life.  We celebrate because God has made this prefect little guy ours and we are the ones that get to watch him grow and succeed at life.   

We celebrate because we are blessed.  

Thank you wild man for opening my eyes to more than just the negative.  Thank you for helping me see there is beauty in everything, even in X’s. 

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