Swimming Against The Current

Often times we take for granted the amazing things in life.  The feeling of being in love, the confidence when you get your license, graduating from high school or college and the magical feeling of Christmas morning.  More times than not, we rush through life just to take up time while always "waiting" for the next big thing. It's been a long time since I have just enjoyed a typical day.  I was always stressed out and couldn't wait until bed time just to get to the next day to do the same thing all over again.  It was a habit, it was a routine, it was life...but it wasn't fun.  I was recently introduced to happiness again.  I have learned to enjoy the sunrise every morning, take my time and enjoy every day with my children.  I love watching the snow fall and how beautiful the trees look the morning after a storm. The last few months have been excruciating but filled with happiness at the same time.  I decided a while ago that I was going to go to school to be

I don't know what is going on with my DBS, my body is twisting in every direction and the pain is unbearable.  I trip several times a day because of the weird position my feet are in and my hips and knees are starting to ache because of the way I'm walking.  I have a twitch in my neck that makes it look like I am nodding my head or dancing to music and going out in public has become embarrassing and terrifying.  I have seen my neurologist several times, who has done adjustments to my DBS and has taken x-rays and CT scans to make sure the leads have not moved.  Tomorrow they will have a meeting with the surgeon to discuss what is happening and what the next steps might be.  I have watched Cody fight through obstacles every day, smile through all the pain he's suffered, and stand strong and brave through so many tests, operations, therapies etc.  I am trying so hard to be like him, to fight through these hard times with a positive attitude and really hope that things will g

I've never met anyone with the kind of bravery and strength that my son has. Cody has gone through more in 4 short years than most people go through in their entire life. On Monday, Cody went into the OR, yet again, to have a pretty complex surgery.  We had to be there at 9:30 and he was not brought back until 2:30.  They made an incision in his neck to carefully move the carotid artery out of the way in order to do the flap.  They were very successful and able to do everything as planned with no complications or injury to the artery.  We didn't get to see Cody in the recovery room until about 6:30 and at that time, he was having a pretty hard time with his breathing.  He required constant monitoring and jaw lifts to open up his airway.  It was horrifying to see as a parent.  After a little while, Cody was moved to the PICU, where he was monitored and sedated over night.  On Tuesday morning, he slowly woke up and was pretty miserable.  His oxygen dipped a few times but he wa

I have never been like everyone else. I am girly, I guess, but I love four wheelers and fast cars.  I enjoying dressing up but I'd rather be in jeans and a tshirt.  I hate high heels.  I love spicy foods.  I don't like to relax, I like to always be on the go.  When it comes to my medical history, nothing has ever been typical or normal.  Everything I have is something no one has seen before.  When I dislocated my shoulders, the ER doctor had to read a book on how to put it back in because it was dislocated in the back not the front.  When I was little I had headaches all the time and no one could figure out why, it felt like there were marbles in my head.  No shoulder surgery was easy, and everything I ever had done, there was a complication.  When I had my tonsils out I got really sick, lost 15 lbs., my throat started bleeding about a week later and I ended up in the ER.  When it comes to my dystonia, once again its not typical or normal... not that dystonia is normal to begi

Seven years ago, I was preparing myself to become a mother for the first time.  After going into labor twice, having it stopped and being put on bed rest for a couple weeks, Hailey decided by her due date she didn't actually want to come out yet.  I knew at that moment she would do all things on her own time.  On September 29, 2010 I was induced at 6am.  After 12 1/2 hours of labor, she made her appearance.  I fell in love immediately with her gorgeous, round pink face.  She had a head full of dark hair and beautiful blue sparling eyes.  Within Hailey's first year of life, she learned her first words ("hungry" being one of them), she learned to giggle, sit, crawl, stand, and walk.  We tried to take her pacifier away many times with no success.  We even cut it and by the end there nothing there but she still chewed on it.  At 2 1/2, Hailey decided to just throw it away and she didn't ask for it again.  This was one of the first things she did that made us realiz

September is Dystonia Awareness Month so I wanted to share a little about how my dystonia has recently been affecting me.  It's like a flash back to when I was pregnant with Cody.  My left foot got stuck and I was trapped the whole 9 months because I couldn't have my DBS settings changed.  My foot is exactly the same now.  I am having a very hard time walking and my whole left leg/foot is throbbing.  My left hand is also stuck and I am unable to open it and use it at all.  This hasn't happened in a long time.  Sometimes, I'll have a "spasm" here and there that usually gets better with time and rest.  This has been on going.  Last week it was my neck.  I checked my batteries for my DBS and they seem to be fine so I feel like it must be stress related.  I'm working on trying to relax and rest and get in to see my neurologist as soon as possible.  Thank goodness I have my beautiful children to give me strength to get through times like these.  Friday wi

This morning, I got a phone call from Cody's surgeon.  It took me by surprise because not many doctors will call you directly.  His first words were, "I've been thinking about Cody and talking with his team as we all looked through his images." He spoke with our genetics doctor and they both feel like Cody would not tolerate the palatal lift.  This was my biggest concern because he is so young and his mouth is so little.  They wanted us to desensitize his mouth to get him used to it and I just didn't think he would do well with it. He has a new plan.  He has a colleague that he works closely with who would help him do a different procedure.  He wants to work with a vascular surgeon to cut a small incision in his neck and move his carotid arteries over and pin them in place where they should be.  After this is done, he would go in through his mouth and do the pharyngeal flap.  This scares me more than anything we've ever done.  It's a huge decision.  Al

When Cody was a baby, he often times had food come out his nose.  He was stuffed up all the time, had ear infection after ear infection and things just didn't seem right.  As he got a little older, he never really cooed or made many noises and his speech was very delayed.  When he started to talk, we noticed his voice was very nasal sounding and he couldn't figure out how to get the air to come out his mouth but instead it would come out his nose.  We saw a doctor at Boston Children's Hospital when Cody was 2 to evaluate his palate and try to figure this out and help us make Cody healthier.  He wouldn't touch him, examine him or do anything to help us.  Our next step was to get a second opinion at Mass Eye and Ear.  Immediately, the ENT doctor there told us Cody had velopharyngeal insufficiency (VPI) and would need surgery pretty quickly to help improve his health and quality of life.  "VPI is a failure of the body's ability to temporarily close the commu

It's amazing how good life can be when you surround yourself with positive people.  No matter how low you are in life, it could be worse.  A friend recently helped me realize how to appreciate the things you have and no matter what situation you are in, there's always a solution and there's always a way to make it better.  I find myself looking for the kindness in people, the positive in every situation, and the good things in life.  This Wednesday Cody is having probably one of the biggest surgeries he will ever have.  I have been a nervous wreck since I scheduled it.  As a parent, we tend to over analyze every situation, google every symptom and surgery and hope for the best but prepare for the worst.  I have learned over the last few days that with a positive attitude, positive people by my side, and a prayer to god, everything will be just fine.  Cody is by far the strongest kid I have ever met and he WILL get through this.  He WILL be okay.  His speech will improve s

It has been almost six years since my DBS was placed.  The most horrifying experience but so life changing.  My days got better over the years as my hands began working again.  With the exception of a couple bumps in the road, my life has drastically improved.  My happiness escalated and I felt so free and able to move and live my life to the fullest.  Without DBS, I can't imagine how difficult it would be to raise my children, to change them, drive them, play with them and hold their little hands as they learn new things. Over the last several months, my eyes have really been giving me a lot of trouble. The pain shoots through my eyeballs like a knife.  The room spins and fills with stars. My neck aches and my head feels like it weighs nearly 100 lbs. I have been to several eye doctors, neurologists, neuro eye doctors, and my primary care doctor and no one really knows what this is from or what is causing it.  Some days I want to rip my DBS out of my head and see if these symptom

Have you ever sat in a waiting room while your child is in surgery?  Staring at the clock, looking at your phone, trying to read a magazine but your not comprehending anything your reading. By 10:00 you've had 3 coffees and barely any food because your child couldn't eat, so why would you.  Hours pass and you pace the hallways, stare at the other families as the doctors come get them and tell them their child is ok.  The longest days of my life are the days my child goes in for surgery.  The minutes pass like hours and the anxiety within me is unbearable.  Just thinking about another one of these days scares me.  It's not about me.  It's about my poor little Cody.  He doesn't know what's going on, but yet he does.  He's starting to realize what surgery means and he is starting to ask every family member if they will visit him. The minutes after the surgery is over is the scariest.  It's always the same.  They come get me and tell me he's fine and s

I believe in kindness and helping people.  I believe that no matter what, you should smile at the person walking by you on the street even if they don't smile back.  I believe in sunsets and dancing in the rain.  I believe in finding the good in every situation even if it feels like your life is about to end. The last year has been rough.  I've been through a lot and I'm still here, standing tall and proud.  I have fought through obstacles, stood strong for my children and changed my life in the matter of days.  There are a lot of things about life that are hard.  It's hard to smile when you find out your dad is in the hospital with pneumonia and the flu and will be intubated for 9 days.  It's hard to laugh when your son is going in for his 12th surgery in just a couple weeks, It's hard to stand tall when nothing around you feels right.  But, I have learned that sitting on the couch and crying and feeling sorry for myself will get me NOWHERE.  How will that hel