To sum it up...

I appologize in advance, I am crappy with technology..this is my first blog ever so it will probably be sloppy.  I also may curse often,ramble and have a sick sense of humor.  Hell, if we don't start laughing at ourselves every once in awhile, we will never stop crying....right?  A little about me... I am quiet.   Mostly keep to myself and run away from confrontation like a scared little biotch.  I just don't like it.  It's not for me.  I have always been a doormat, that's just who I am.  I let people treat me however they want.  But when it comes to these kids, this little woman is 30 feet tall and has the strength of a beefcake on steroids.   I.don't.play.   

Let me start by saying, I have always known Connor was different.  From when  he was a few weeks old I felt something was off.   I just wasn't sure what.  As time went on, I saw it more and more.  He was just such an unhappy baby.  He cried so much.  I didn't know how to comfort him.  It seemed to get a little better with time and I let everyone convince me that it was just colic, or gas or whatever.  Then it came to sitting up, he wouldn't...crawling..nothing... standing? No way.  Walking was a hell no.   He was behind on every.single.milestone.  What the hell?  His brother, Luke, reached these milestones so much faster.  But everyone assured me that Connor was fine.   Eventually, he did reach his milestones.  But I still felt something was off.  I talked to his doctors about it, my husband, my family.  Everyone told me to let it go, he is fine and I am being ridiculous. Then at about 15 months he started throwing tantrums.  He would get so upset that he would hold his breath.  Again, everyone said he was normal.  What do I know? I was just a mom of 2 boys with a little girl on the way.  I am no doctor.  We just learned to deal with the tantrums.  In January, Luke and Connor welcomed their little sister Everley into the world. Things were hectic with Luke in preschool and Tball, Connor's tantrums and Everley being an brand new baby.  I was back in school and running a business and my husband just worked crazy hours.  But we managed as a family. Until May.... the worst day my husband, Chris, and my life... 

  I wrote this paper to sum up the worst day of my life for a class, I'll just share:

The Last Day of My Youth
The last day of my youth was the day I thought I lost my son. I will never forget May 3, 2012. It was a pretty hot day and the evening was only slightly cooler. My older son, Luke, was next door playing with his friend and my two-year old son, Connor was playing outside with my husband so I could clean up from dinner. My husband was bringing Connor back into the house and as usual, Connor was throwing a fit. His little round face was flushed from running around and he was clearly tired but he kept fighting to stay outside. My husband carried him into the house and set him down; Connor threw his usual tantrum. I walked over to him and said “Come on Connor, let’s go get your pj’s on.” He just lay there on the ground. That is not unusual for him, so I said again “Come on buddy, let’s go get cleaned up.” He didn’t move. I noticed he was convulsing. His little body was stiff and shaking. He started to turn blue. I screamed for Chris to call 911. I held my blue, rigid baby in my arms. I thought I had lost him. Chris ran outside while calling 911 and got my neighbors to help. I had started CPR but I was in no condition to do it. My neighbor pulled me off and started to administer CPR herself, monents later another took over. All I could do was scream. The ten minutes it took the ambulance to get there felt like two hours. I remember my neighbor, Cassie, holding me back while her husband continued CPR on my lifeless baby. Time felt like it had stopped. As soon as the paramedics came they grabbed him and ran right to the ambulance as I followed quickly, but nervously.
The ambulance was cold and bright on the inside. I was alone and terrified, Chris had stayed back with Luke and Everley so they could get situated at our neighbor’s house. Connor lay on the stretcher lifelessly. They were checking is vitals and hooking him up to machines. It was so comforting to see his heartbeat up on the screen, but he was still not awake. They said they were going to start an IV. I thought to myself, “No way will this child let them do that.” But he still lay there motionless, my heart sank. They couldn’t get a line on the first or second try. On the third, Connor came up swinging. All I could do was thank god. For that one moment I saw his fiery temper came back and I had some hope. But then he just went back to lying very still. The rest of the ride to the hospital was quiet and felt like it was taking forever. When we finally arrived to the Emergency Room, things moved more quickly. They were finally able to get an IV started and did all of his blood work and his CT scan. Chris was waiting for us when we came out with Connor’s favorite stuffed giraffe. All of Connor’s tests came back normal and we were told it was a fluke and would probably never happen again. When we got home that night I didn’t sleep, I watched him to make sure he was breathing. Not even 24 hours after the first seizure, he had another.
Every day I live in fear that he will have another. I watch him like he is ready to combust at any given moment. We still do not have any answers for what caused his two seizures but are still fighting to get them. We go back and forth to Greenville for different doctors’ appointments and tests. Though I would like to have an answer, I also think maybe it would be better to not have one. If they don’t find anything, maybe there is nothing wrong and it will never happen again. The only thing we can do now is wait.

I didn't mention in that particular post, but I had to FIGHT with Connor's doctor to get him to see a neurologist. They just didn't think it was necessary.  I did.  I am so glad I did.  I put in complaints on everyone I came in contact with, and their mother, and eventually I was able to make some progress and Connor was seen by a wonderful pediatric neurologst in Greenville who sent him for an MRI.   In September, we finally got a diagnosis.  Chiari I.  What in the fuck is that? I said when I got off the phone with Connor's doctor and I just started to cry.  I never heard of this.  What is this monster that sounded like someone made it up?  I wasn't even pronouncing it right for the first two weeks.   I didn't know what to think.  Will this thing kill my son? What can I do? How can I fight it?  That day I started researching Chiari and have not stopped. Connor is being seen at Duke now, which is the best place for him.  Even though his first doctor was not the best fit, this is a post explaining why:

Dec 19

Some people aren’t really into gut feelings. I am. Just as I knew from when Connor was just a few weeks old that he was different, despite people telling me I was nuts, I know what I am about to say right now is the right thing. When the doctor gave us the surgery date, I got a sick feeling in my gut that if we did it then, he would not come out of it. Connor was only diagnosed in September.... He has had only ONE MRI showing a 9mm herniation. With no comparison MRI, how do we know that Connor isn’t one of the lucky ones who have a herniation that shrinks or does not grow at all? Why was Connor not given pain medication to control his headaches like the other kids instead of just doing surgery? Why would we rush to remove a piece of his skull and his C1 vertebrae without at the very least one more MRI? Between that and seeing some of the other kids Connor’s age who recently had the surgery struggling to recover, one even losing her life due to complications, I feel even more that I am right. My child will not be anyone’s guinea pig, not now, now ever. I’m not saying no to the surgery forever. I’m just saying no right now. There are times that I do not sleep for days because Connor is restless and beats the bejesus out of me all night…or the days that he has a headache so bad that all he can do is cry and hit and punch me because he has no way to explain to me that he is hurting… This isn’t an easy choice. There probably is no right answer. I know a lot of people in my life do not agree with my choice, but I really do not care what they think. This is MY son. I am the one who has been there from day one. I brought that boy into this world and I will not stand by and let someone push me into a surgery that he may not recover from. I know I am not smarter than a doctor, that is for damn sure, but I am an expert on these kids. In my 6 years of being mom I haven’t been wrong on anything major. Nothing that my gut told me to do has been the wrong choice. The day of Connor’s first seizure was the last day of my youth. When you hold your lifeless child in your arms and think he is dead, you are changed forever. I was lucky. I didn’t lose him that day. But I wake up every day fearing it. I can’t go through with this surgery at this point in time. I had to fight to get him seen by these doctors in the first place and I will continue to fight for more testing until I know for sure what the right thing to do is. He is only 2 years old…. It’s my job to fight for him, he can’t fight for himself.

 

Luckily, we met with another doctor on Jan 14th who is willing to do another MRI and we will go from there.  The waiting game is bittersweet. 

  I am no where near knowing what I need to know.  All I know is, I can't just sit here and do nothing.  It is not enough for me to learn about it, I want everyone to know what it is.  I never want another mother to know there is something wrong with her child and be made to feel like she is insane.  I won't stop.   Connor is my son for a reason, all three of my children are.  Each of them has a different and special personality.  We just fit. 

This is all I can really muster up right now.

This is my Connor.  He may have a bad temper and be a bit of a crab sometimes, but when you hear that boy laugh, god you can't help but crack up.  He may be a bit hard to handle, but the love I feel for him is just indescribable.  This boy and his brother and sister are my life.  I will do anything I can for them.  You may wonder, what the hell is her point?  My point is to raise awareness.   This does exist.  There is no known cause and there is no cure.  We don't know how to prevent it, we don't know how to stop it.  But god damn it you will know about it.  I don't care if it is the last thing I do.  And I am not alone.  Connor is not the only one with Chiari.  There are many childrens and adults who have it.   Some are the only one in their family with a known case, like Connor, others have multiple family members that have it.  The point is, this is out there.   And it will not be ignored any longer. 

Connor, who we lovingly refer to as meatball.  He aspires to be Batman.

 

Luke, Connor and Everley tearing the house up:

 

 

 

 

You and me kid....