Seeing is believing!

I feel like I'm coming out of my funk that I have been in for the past few months.  I have that positive feeling back, I'm starting to not hide in my house as much... things are looking up. A good friend from back home who is also stationed down here has been a tremendous help with the walk. He has gone out of his way to make sure I'm not on my own. I'm not one to ask for help with anything. Ever.  But knowing me for so long, he has just done it.  Pretty cool.  So, we move forward with the walk.  September 21st, Emerald Isle NC. 

As for everything else.  Not too bad.  Luke is in his first year of Pop Warner Football. I have some mixed feelings about that. Luke is my gentle giant. He is not aggressive at all.  He is a lover, not a fighter.  I feel some of the parents take it way to seriously and it should be more about fun than ripping eachothers heads off.  But, what do I know?  I'm more of an indoor type of girl anyway.

 

Everley, ah, Everley. She is my tiny terror.  She gives the boys a run for their money.  She is hell on wheels with the smile of an angel. I love every minute of it.

And then there is my Connor. My sweet boy with a heart of gold who won't hesitate to knock you out if he feels the need to.  Or lick you, don't forget the lick...  He is making progress in OT.  I see it.  No one else besides his therapist and I see it.  But if you know anything about me, you would know I only think my opinion is valid when it comes to my children.  (Yes, I know, my poor husband, and yes, I know, I need therapy)   Connor is speaking a bit better, he can sing a good chunk of his alphabet now.  It's quite cute.   He is also being a bit better about his hands and feet.  It's not a brawl for me to cut his nails anymore.  He doesn't flip out quite as horribly if he gets something on his hands.  But there are still the migraines.  Pardon my french, but FUCK these migraines.  It's just so unfair.  All I can do is hold him and try and ease the pain and wish that it was me instead of him.  Isn't that what we all wish though, even if your child has a cold... you just want to take whatever is bothering them away and put it all on you.  Mom can always handle it better than her baby.  At least we think so.
 

Another great thing, Connor's glasses arrived today.  He keeps telling me he is Clark Kent.  I agree.  He looks like a little ginger Clark Kent.  More amazingly, he can see properly.  He had them on and saw the etching on the car window for the first time.  "What the heck that, MOMMMM?!"   I know it will be an adjustment. He keeps touching them and getting fingerprints all over the lenses.  But he will adapt like always.   He looks pretty damn cute too!

“The relation between what we see and what we know is never settled. Each evening we see the sun set. We know that the earth is turning away from it. Yet the knowledge, the explanation, never quite fits the sight.”

You and me kid.

Connor has had a pretty rough week.  Some of it being a wicked headache, some of it being too hectic for him and some just the fact that he is three. It seems like much of life is a battle right now for me.  Even eating... Connor has completely regressed with eating. We used to have several "safe" foods that he would eat. Now I'm lucky to get him to eat a bowl of cereal. Sleep is less and less. I'm either up because he is up or I am up making sure everyone is still breathing. Lately I feel like I just won the lottery if I am allowed to shave my legs in the shower.  School? Yep, that's a joke.  I can't focus when I am there or I have to miss it due to something happening at home.  I was dropped from a class that I did 90% of the work in already because Connor had a seizure and I missed more days than I was allowed to.  This is not Connor's fault. Not the schools fault either.  It's life. Shit happens.  You deal with it.  I switched to online classes for the next term so I won't have to worry about the attendance.  This is going to be tough.  I have such a hard time focusing at home but I know I'll get through it.  If I can just get this school stuff done......  It will happen.  Just not as soon as I had hoped or planned.  When I do graduate, Connor needs to walk across that stage with me.

When you become a parent selfishness goes out the window. Everything you do is for them and about them.  My biggest goal in life is to make sure they are all happy, healthy and have every opporunity in life.  Today is one of those days that I woke up feeling sorry for myself.  How dumb is that? Connor's worst day would be a blessing to someone else.  There is always someone who has it worse. Quit your bitching! Right?  Setbacks are just that, they are setbacks. You just have to choose to keep moving and keep working towards your goals.

"It's not only children who grow. Parents do too. As much as we watch to see what our children do with their lives, they are watching us to see what we do with ours. I can't tell my children to reach for the sun. All I can do is reach for it, myself. "

Faith, fish and the meaning of life...

My sister and my nephews are here visting from California. I haven't seen them in about two years and we don't know when they will be back in NC after this.  So needless to say, we are all thrilled.  Even though Connor hasn't seen them since he was a year old, he sees pictures and hears about them all the time.  He had no problems adjusting to being with them at all.  We decided to all go the aquarium.  It's most likely a sight ot see in itself, my sister has four boys, and I have Luke, Connor and Everley. We are like a traveling circus.  (All of the kids behaved though WOOOO)  But anyway, it's tourist season here and with the possiblity of more rain, the aquarium was packed.  This tought us a brand new lesson about Connor: he does NOT like crowds one bit. 

Connor was showing the tell tale signs of unhappiness.  The twitch, the tongue sticking out and smacking himself in the head.  He wanted me to hold him a lot or he wanted to hold his Aunt Erin's hand.  As we kept walking, it got more congested with people, the more congested it got, the more I saw fear in Connor's eyes.  So what do you do?  We went into the shark exhibit, found a nice spot in the corner to sit with our backs against the wall so Connor can just look around and know no one was behind him, and we sat.  I held Connor on my lap and rubbed his head.  Luke pointed out all sorts of fish to Connor and Everley picked her nose, of course.   We just sat there and watched the fish and the people.   It amazes me how understand Luke and Everley are.  Maybe because they know no other way to be.  I'm always in amazement of my kids. All three of them.  We eventually made it out of the aquarium, unscathed and without any metldowns. All of us together.

I've mentioned it before but it weighed on my mind yesterday a bit, why is that we are given certain things it life to deal with? Why do some have it so easy and others have constant hurdles? I am not overly religous.  I do believe in God, very much so, but other than that I just don't know.  But the more time I sit and question why, the more I realize what a waste it is.  Why focus on the boohoo when I can focus on the good things?  You endure things in life.  It happens.  You don't know why, you may never know why. You just do what you need to do to get through them. 

You live life the best you can.  You constantly improve yourself. You have to be willing to be learn things, even if it's from children.  If it is in your power to help someone, you do it, no questions asked and wanting nothing in return. You love with your whole heart. You be as honest as possible, especially with yourself and you just continue to live life.  And most importantly be grateful for everything you have.   Connor's not so good day would be a miracle for someone else. 

 "I'll love you forever,I'll like you for always, As long as I'm living, my baby you'll be."

What holds you together?

I think everyone, no matter who they are or what they are dealing with in life has meltdowns occasionally.  It doesn't matter how wonderful your life is, you are bound to have one over something at some point, right? I mean, we are all human afterall.  But what pulls you from your meltdowns?  What keeps your feet on the ground? For me, its the kids.

I was having a freak out earlier this morning. One of those days where I just wanted to mope around in my stained tshirt and EXTREMELY unattractive pj pants.  I was even contemplating if brushing my hair was really that important.  In between making everyone's bed and giving the kids breakfast before Luke had to go school I stood in the kitchen for a minute and was having a mental break down.  How the hell can I keep going?  Luke has school, sports and a social life.   Everley is an insane toddler who is always into something.  Connor, is Connor.  We have good days and bad.  I have school and work... I have a family to take care of.  A Chiari Awareness walk to plan that is rapidly approaching.  I can't do it.  I need to quit everything.  I don't want to do it anymore. I want to go back to bed and hide.  It was seriously a minute of panic, and then in comes Connor....with a clown nose.  In his sweet little Swedish accent he said "Here mam, put dees on!"  I did.  Boom, snap back to the real world.   Isn't it funny how some things are just genetic.  I look at Connor and all I see is my husband.  They look so much alike.  They even have the same seriouness and stubborn personalities... but the goofiness.. that is just rooted deep in them.  You can't pick and choose what traits are passed down...  but I'm glad they have my ability to make a joke out of everything.  Kids are great for so many reasons, but I truly love their honesty and how much they truly care and the interesting way they show their feelings.  Even if it's something as simple as putting a clow nose on mommy to cheer her up. 

"The most interesting information comes from children, for they tell all they know and then stop."

 

Conquer Chiari Walk Across America

From the beginning of receiving Connor's diagnosis I was desperate to find information.  What was the most amazing source? The Conquer Chiari Foundation.   Every year for the past six years they have done an awareness walk.  This year I am organzing one for our area, Emerald Isle, NC.   To say it has been a challenge is putting it lightly. It is so hard to get sponors and donations. It's so hard to plan where you will have it.  It's hard to get people to register to participate in the walk.  But it's worth it.  I'm sure it's only hard because it's my first year and next year will be much better.  A lot of it is the fear of the unknown, but I have been lucky to get a lot of amazing advice from other organizers.  I'm pretty excited about it. Every place I speak to is another place that has now heard of Chiari.  Even if they don't want to participate, they have now heard the word.  Victory in it's own.

If you are interested in walking with us, please register below! We would love to have you!



To register to walk or donate for the Emerald Isle, NC walk:
http://www.conquerchiari.org/ccwaa/ccwaa-main.html

Walk Facebook page:
https://www.facebook.com/groups/476936415703267/

“Those who say that we’re in a time when there are no heroes, they just don’t know where to look.”

Connor has been interesting lately, to say the least.  But his quirks make him who he is.  Who he is, is just indescribable.  He's a sweetheart, a lover, a fighter, a clown, a crab.... so many things wrapped up in a little ball of pale skin and reddish blonde hair with those bright blue eyes that can make you melt.   How can I feel sorry for us when I have such an amazing boy, two amazing boys and one amazing little girl? You can't.  I kind of feel like the past few weeks that I've been punk'd.  Crap can not really be going this bad? Can it?   How can I be having health issues of my own when I need to be on my game for these kids? But, sometimes that's the hand you are dealt.  If these kids are okay all is right in the world.  If Connor can get through a day with multiple migraines, I can too. 

Despite my crap day and Connor's cranky day, we still turned it around.  We went for a nice walk and fed the ducks (which Connor can't get enough of).  He loved it.  There is always a chance to turn your day around. 

I also am amazed how I find myself looking up to my three year old son.  Heroes come in all shapes and sizes.  Mine is Connor shaped. 

“If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you.”  

Always choose your battles.

I'm a big fan of common sense parenting.  If something seems like it is a bad idea, it probably is.  If something works, stick with it.  For me, the old saying "choose your battles," is a good piece of advice.  

Connor has several great loves of his life.  As you saw last blog, bacon is one.  But he also has VERY strong feelings for donuts. This morning Connor woke up pretty intent on having donuts for breakfast.  If you knew Connor, you would know that he repeats whatever he wants over and over and over until you either A. Jump out a window to escape it or B. Give him what he wants.   Since I haven't jumped out a window (yet, I may eventually) Connor usually gets what he wants in some shape or form.   Today, it was donuts.  The easy thing to do would be drive to Dunkin Donuts and get him his favorite strawberry frosted with sprinkles. (He NEEDS two.  One is not enough, three makes him flip out).  Anyway, driving anywhere today is not really an option.  Mommy had another iron infusion yesterday afternoon and has felt pretty crappy since.  Dizziness and driving = no bueno.   I tried to reason with Connor. 
Me:  Mommy can't drive, can I make you waffles or pancakes? How about cereal?  You want to eat cereal every single meal anyway, how about that?
Connor:  Mehhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
Me: How about some fruit and oatmeal?
Connor:  :Throws his cup at me.
Me:  Okay, donuts it is.... 

What do we do?  We make donuts.  I let Connor help.  By help I mean drop an egg on the floor and turn the mixer on warp speed sending up a cloud of flour in my face.   Still, donuts were made, kitchen was clean and the whole three kid circus was happy.  

So compromising works.  Connor wanted Dunkin Donuts, I couldn't drive, we make donuts.   Everyone wins. 

Choosing battles and compromising works well with children.  But what about adults?   Ehhhhh, not so much.   There is this woman that lives down the block.  Generally unpleasant and a bit socially awkward.  I figure she just is not very wondeful with people and continue to be nice to her.  I let many comments slide that she shot my way and just kept being nice.  My mom always said kill them with kindness.  She's a pretty smart woman, so I take 99% of her advice.   Anyway, back to this woman.    I took most of her obnoxiousness with a grain of salt.  Listened to her know it all advice even though she has pretty much no experience in the things she spews out.   Still, I was polite.  But then the bomb dropped.   She would make some snide remarks directed at me about how people shouldn't baby autistic children because they need to learn how to care for themselves and make comments about Connor in general.  Give me her thoughts on Chiari (something again she has NO experience with)...   I'd still be nice... but then she did it.  She made the comment that all people with mental issues should be put in an institution.   Really? So my three year old child should be put in an istitution because YOU think that people like him commit violent crimes.   So I did what any sensible person would do.  I ignored her.  I avoided her when I saw her around base and deleted her off Facebook.  I had her blocked for a little while because I did not want to flip out and say something awful to her.   I thought I could handle unblocking her.  I was wrong.   I saw her doling out her usual idiotic and false information to someone yesterday and I went nuts on her.  What she was telling the other person wasn't harmful or anything, just wrong, but I had so much anger from what she said previously that just stewed inside me for two months that I flipped shit.  So unlike me.  I am the nicest person you will meet normally.  If it is in my power to help someone, I do it. No questions asked.  But when it comes to my children I grow a set.   Was I right to flip out on her? Probably not.  I certainly didn't listen to my moms kill them with kindness advice in that situation...  But what can you do?  Technically, I did pick my battle.   It won't change that woman's view on things.  It won't change my opinion of her.   In the end, I come off looking like a gigantic jerk.  (I was pretty mean).   I can't really say I regret it though.  I truly feel that every single situation you face teaches you something.  It can be something big, it can be something small.  I think I learned this time that some people do not matter.  Some horrible woman that lives down the block is pretty irrelevant.  There are plenty of awesome people all around.   Don't sweat the small stuff.   I still think I should have Connor go lick her though, but he has better taste ;)

Cinnamon Sugar donuts courtesy of Connor (Mommy helped some...haha)

I walk the line.

This past week has not been too pleasant.  Connor has been waking up MISERABLE. All he does is cry. I don't think it is a headache because when I ask him he shakes his head. It seems like his back hurts. I've been really careful to check his sleeping position during naps and at night. Needless to say, I'm still not sleeping very much.  By the time noon comes I have my white flag up.  But what can you do? Keep moving of course. 
My sleepless nights leave me to a lot of thinking.  I walk a line between denial and outright unrealistic paranoia. What is going to happen in the future? Will this all straighten out? Will no one ever be able to tell that anything is different? Will he just blend in and go on to lead a normal, happy life? Of course he will! He is MY child.  Nothing can go wrong when it's your baby...right?  Happy land...  Then paranoia hits.  I think to myself, "Jodi, no one can understand your kid but you, he's going to go to school? No, you need to homeschool him!"   Yea, poor kid.  But in all seriousness, how is this going to work?  Will he have to be in a seperate class from the other kids?  Will he get made fun of? Will he ever have a friend besides his brother and sister? When he is a teenager, will he be able to have a prom date? A girl that has been saying to herself for months, Gee, I hope Connor asks me...   Will he live with me until I am old and need someone to take care of me...  What the fuck is going to happen with my kid?  What else can I do to help him?  Sometimes I just don't know what to think. All I can do is keep taking him to his doctors appointments, keep taking him to his therapy and keep being patient when we get the stank eye in public when Connor has a meltdown.  This is my life.  You take it or leave it.  I take it and keep going.   I'm not going to lie though, denial days are way more fun.

 

Built in best friends, Connor's big brother Luke and baby sister Everley.

Head above water..

It's been awhile.  A lot has happened since our good news.  With the joy we felt from that good news, we had some very unsupportive people.   Sadly, as much as I loved them they had to be cut from our lives.  I have been holding my breathe since Connor's first seizure and I don't need any added headaches.  I learn daily how precious life is and I just won't tolerate anyone dragging me down.  I sometimes do a good enough job of that on my own.  So, where are we?  What is going on?

Chiari I of course, is still a concern and always will be.  Connor still has seizures and breath holding spells.  He still has his twitches and ticks.  But now we have Autism/sensory back on the table.  This is kind of something I felt all along but with the Chiari diagnosis and not knowing much about Chiari at first I thought maybe that was the only issue.   Life with Connor is challenging.  He has some good days, but a lot of bad.  He can go from calm to ferocious within seconds.    Every trip out of this house is planned to a T.  That is just life.  Sometimes I feel like I am Connor's personal punching bag, I am often covered in bruises and bite marks.  Luckily, Connor has started OT and we are learning ways to help calm and sooth him.   Luke and Everley are doing pretty good though.  Luke is getting ready for first grade (after the much anticipated summer off) and Everley is in the "into everything" stage. 

As for everyting else in life, it falls to the wayside.  School, I'm struggling...social life?  What's that?  Chris and I are doing our best to find time for ourselves but date time is rare.  We do give eachother each a day off on the weekends... Chris goes fishing one day usually and I get to sleep until 10 or so the other... (not really a day off, but it's something) .  For the most part I feel very isolated.   Having three children can be tricky as it is, but when you add in one with special needs people seem to run from you.  Or do they?  Lately I have felt like no one is there for us but today I am wondering, is it me?  I have just started completely backing away from everyone.  It's so much easier to just not go anywhere than it is to attempt an outing and make a scene.  I feel as if there is no road map for this.  You can read all the articles about Chiari or Autism or anything for that matter, but you will never know how it affects YOU or YOUR CHILD.  Everyone is different and you can't compare.  When you start compare you realize how you come up short.   It's really exhausting.  I feel like the champion of the day if we make it through without Connor hurting himself or his brother or sister.  If I end the day with a bloody nose or a black eye, it is still a victory as long as no one else was hurt.   Don't get me wrong, not every day is like this, but most are.   My love for these kids grows stronger every day as does my desire to make their lives fantastic.  I go to school, I work, I have my cupcake business (though small right now) and I just keep moving...

“We love our superheroes because they refuse to give up on us. We can analyze them out of existence, kill them, ban them, mock them, and still they return, patiently reminding us of who we are and what we wish we could be.”

#10

As you know, Connor had his MRI yesterday.   I'm going to copy and paste my Facebook status from last night, because let's face it, it's so much easier.

"When we woke up at 5 this morning I never expected the day to turn out as it did. We had a bit of a rough start, Connor doesn’t really like anyone to touch him that he doesn’t know so it is never fun to bring him to the doctor. Luckily the staff is amazing and knows how to handle children and he was able to be put under without much trouble. There was also no point in time that we had to leave his side, even during the MRI, which of course made me feel so much better. Connor started to wake up during the MRI but they got him back out quickly. While we were waiting for him to wake up, I left Chris and Connor in recovery so I could speak with his neurosurgeon. It felt like forever before he came in. He had such a blank expression when he took out Connor’s films, and then I heard it “It shrank.” That was it for me. I immediately choked up. Not only that but they did his first MRI with his head at an awkward angle which made everything look so much worse. January 16th Connor was supposed to have the decompression surgery with another surgeon. The moment she told me that date I had such a sick feeling in my stomach. I just couldn’t agree. I wanted another MRI. She would not agree with me. She made me feel like I was stupid and crazy. All I wanted was to be sure. Luckily I was able to get Connor in with another doctor. Can you imagine? Connor would have had a piece of his skull and his c1 vertebrae removed that day.  And for what? I know that I do not know everything, and I am nowhere near as intelligent as a doctor. But I know my child, and I will do what I think is best no matter who likes it. It is okay to question doctors. It is okay to get second opinions. Shit, get a third opinion. Do what you have to. You are your child’s voice. Our fight isn’t over. We still have a lot of sleepless nights and migraines ahead of us. We have a sleep study and an ENT appointment to schedule, but NO surgery for Connor anytime soon."

I am still in shock.  I was hoping and praying that we would get good news.  I just can not believe how good the news was.  But with the shock comes the "what ifs"  What if I hadn't questioned her?  What if I let her just open up my childs skull and remove a piece?  For nothing.   I wrote the original surgeron a letter this morning, though I'm sure it doesn't make a difference.

                                                                                                February 19, 2013

"Dr. X,

            If Dr. XXXX has not shared Connor’s MRI findings with you yet, I am sure he will soon.  I am writing to say that even though you would not order another MRI for Connor after I explained my concerns, that I felt in my heart we needed something to compare his original MRI to as well as to get views of his spine, despite you telling me how important it was to do surgery right away.  Even though your nurse called to ask me why I scheduled an appointment with Dr. XXXX , I still held strong and kept  my appointment with him.   We had Connor’s MRI yesterday and all I can say is thank God I did not rush to surgery as you recommended, multiple times.  This is my son.  He is a playful, stubborn and lovable boy with a laugh that is just contagious.  He is not a chart number. He is not a science project or a guinea pig.  This is my baby.   I do not doubt your education or experience at all.  You of course know more than I do, but you do not know more about Connor than I do.  I am sure I am not the first parent  to be uneasy and fearful about this surgery. It is quite a big deal.  I won’t be the last parent to question you either; this is where I make a request:   Please do not dismiss the parents that want to be sure that surgery is the right thing for their child.  If I had done as you urged me to do, Connor would have had decompression surgery on January 16^th for no reason.  My child would have been in pain and risked chances of complications for nothing.    9 times out of 10, you will be correct with your medical findings.  Connor was number 10.  " 

 

 

So where does this leave us?   Connor will be seeing an ENT and doing a sleep study, but other than that we won't be back up to Duke unless something drastic changes.  He will continue on with his amazing Neurologist and we will take things as we always do, one day at a time.  

 

 

The wait is just about over

I'm not going to lie.  I've had one of those gut feelings again...this feeling in the pit of my stomache that I am not going to like what I am going to hear tomorrow.  I keep ignoring it as much as possible.  You know, Connor can be one of the ones who's doesn't grow... or one of the lucky one's who has it shrink.  Maybe this time we will get lucky.  I'm trying so very hard to hold it together.  I've been doing a decent job of it since his first seizure.  I can keep it together for most of the day, I kind of turned myself into a machine.  You do what you need to do, you keep on a schedule, you put on a happy face so you don't scare the crap out of the kids and you just keep moving.   But every once in awhile when everyone is asleep and it's just me, I lose it.   I'm hoping I can make it through tonight without doing that.   We have a pretty long trip in the morning.  We decided to just leave in the morning.  Connor was just not feeling a trip today and it will probably just be easier to wake him up really early tomorrow morning and leave.  That way he will sleep most of the way there and not notice that he isn't allowed to eat for 6 hours before or drink 2 hours before.   When it comes to toddlers, everything has to be strategic. 

Bravery...

What makes a person brave?  What  makes them strong?  I hear that word a lot.  You are strong.  It's a nice compliment, but I feel like I'm a fake. I'm falling apart, that is not strength.  Then I look at Connor.  After last night, his morning/afternoon did not go much better.  But around the time I was getting Luke ready for his first soccer practice of the season, Connor started to come around.  He just wants to be like his brother.  So, he ran and got his sneakers, yelled at me to put them on, and we all went to practice as a family.  Connor did so well.  He was pretty much happy the whole time and very active.  He doesn't seem to give a flying shit that most doctors don't think sports are the best idea for him.  That boy wanted to play some soccer tonight, and that he did (well, kinda, he just kicked the ball around with my mom while Luke had his practice)  But still, he enjoyed himself.  Unfortunately, he is not doing so well at the moment.  He has a bit of a headache and is just really unhappy.  We are just sitting here cuddling in the dark hoping the headache will pass, waiting for his neuro appointment on Monday.  So it makes me think, what is bravery?  To me, bravery is looking your limatations in the face while kicking them in the balls.

Warning: Hot mess, proceed with caution.

I feel like I should come with a effing disclaimer.   I am incapable of giving anything my full attention anymore.  I'm always waiting for the next bad thing to happen to Connor.  I had a bad feeling that something was coming the way the past few days have been going.  Connor has been pretty unhappy.  Not to mention, the worsening of symptoms.  He twitches so much now...he constantly drools.  Everything pisses him off.  You can look at him and it will cause a major meltdown.  So why should today be any different?  Tonight I had my first World Authors class. ( I was already freaking...that syllabus was nuts...wtf !?!)  But anyway, I went as usual and it wasn't as bad as I thought it was.   Until I get the text: "Connor had a seizure."   That was it for me, I packed my shit and took off like I had eaten some bad chinese...   I went about 80 mph up until I got to base (Yes, I know, illegal, spare me).   It was not a big seizure, but it was enough to scare Chris.  But then again, who am I kidding?  They all scare him.  He has no clue how to handle it except to have me handle it.  Understandble.  Sometimes men can seem as if they are tough but are like little school girls when it comes to their child being hurt or sick.   I get it, I'm terrified too.  I push forward because I have to.  Who else will do it?  Connor is fine now, he is tucked into our bed so I can watch him breathe all night.   Honestly, I have been watching them all breathe since Connor's first seizure last May.  I'm up twice an hour going into their rooms to make sure they are still alive...  I should probably seek therapy for that, but it comforts me to know that everyone is tucked in, safe and breathing.   The most important thing in life is their health and happiness. 

Now let's talk about where I am lacking.  I am a walking disaster.  You can tell me something, I will forget 5 minutes later.  If I met you recently, I have not the slightest fucking clue what your name is, so when you see me in the store and say hello and I look at you like a deer in headlights, I'm not drunk, I'm just losing it.   I am struggling through school, my GPA sucks ass.   I getting A's, now I'm at C's.  I put my businesses on hold for awhile, well, let's be honest about that too, I just gave that shit up.   I would love to do the same with school but then what?  It has to be done.  How will I ever be able to make my dreams real.   Today is one of those days that I am angry.   I feel sometimes like I'm losing myself.  I try to keep a good sense of humor about things  and just keep moving but at the moment.  I'm fucking furious.   Seriously...ayfkm with this?  What next?   They say God only gives you what you can handle, so if God were reading this, I'd like to make it quite clear that my white flag has been up for months.   I mean geez, I walked out of the house this morning without a bra, mismatched socks and morning breath.  Who does that?  A hot mess that's who. 

But as I'm writing this I remember, I am not the one who lives every day in pain.   Connor does.  I'm not the one who is going through this.  He is.    My favorite advice to give to people (I'm dead serious, ask them)  Is "Suck it up and stop being such a little bitch."   It is a small dose of reality that will make you giggle a bit.   I'm taking my own advice tonight.  

Just keep swimming.

Last night was one of those nights, one of the nights that its just me and Connor up all night.  He had a headache for most of the night.  We came downstairs and sat in the dark.  I rocked him all night.  All you can do is hold him close and rub his head.  Tell him you and me kid.  I think we both got about 2 solid hours of sleep.   He woke up this morning without a headache which is a huge plus.   He is napping comfortably at the moment.  These are the days that make me question life.  Why Connor? Why does this have to happen to him? It just doesn't seem fair.  I get sad, I get angry, I feel hopeless.  Sometimes all you want to do is crawl up in a ball and cry.  Do I? No.  I complain on a blog.   I am doing my best not to let the kids see how tired I am.  I don't want them to know how stressed I am.  I do not want them to ever find out that I am terrified.   I will never get an answer to my woe as me questions.  I just have to ask myself every morning, is this the day that you lay roll over and die, or do you get up and fight?  Again, I am following Connor's lead.  I am up, I am fighting.

What do you do when you don't know what to do?

You follow your toddlers lead

As Connor's symptoms seem to get worse, I feel like I'm starting to lose my mind.  The idea of him in pain kills me.  It breaks my heart.  There have been days when I don't even want to get out of bed in the morning.  Days that I just want to crawl under a rock and hide from this.  But, we can't.   Connor doesn't.  Every single time something knocks this boy down, he gets right back up swinging.   How can I sit here and feel sorry for myself and cry when this little boy just keeps swimming?   Today may be a bad day, but not every day has to be.   It's not the things that life throws at you that define you, it's how you swing at them.   I'll follow Connor's lead.  

For those in NC- Easter NC Chiari Walk

Parttttty!

Yesterday was Connor's baby sister Everley's first birthday.   I was very nervous about having a party.  Every time we have a large gathering at the house, Connor doesn't do well.  between the noise and commotion he ends up getting headaches.   If he gets upset because of all the goings on he gets even worse breath holding spells than he does normally.  The whole time setting up for the party Friday night I was worried it wouldn't end well, I was considering cancelling.... But you just can't do that.   I will not let Chiari consume his life.  We will work around it.  We will adapt.  

Once everyone started coming over, I was very uneasy...Connor was fine.   All the kids came and played... I was so worried Connor would freak out about sharing.....he was fine.  His drink got spilled during lunch... I was waiting for it, but Connor was fine.   Presents...  Oh no, his sister was getting a present but he wasn't.  Connor was fine.   Cake time.... Oh geez, he's going to hate when we sing Happy Birthday, he joined in.... 

Note to self:  don't assume the worst will happen, and don't doubt Connor.  Ever.

Eating lunch with Grandma

 

 

Helping his sister open gifts

 

And of course, my little meatball trying to sneak some icing off the cake.

 

 

He and his brother and sister, are the icing on the cake.



For every few bad days...there's a good one.

Today Connor had a really good day.  He woke up happy and went to bed happy.   He ate, he played, he laughed.  It was so great.  That boy has such a contagious laugh.   When Connor laughs, everyone does.  

Today, Connor was Spiderman.  He insisted I wore a mask as well.   He wanted me to wear Optimus Prime, so I cooked breakfast, cleaned and walked to the mailbox all wearing an Optimus mask.  Connor thought that was pretty fantastic. 

1,000,000 likes?

I'm sure a lot of you have seen "1,000,000 likes and I get a :insert something here."   I was thinking last night, what if Connor got 1,000,000 likes.   All we want is in return is that someone sees or hears the word Chiari.   That's it.  So, as usual, here we gol.

Normal...

Last night was one of those nights where Connor just can't get comfortable. You can see he is hurting and the only way he can express that is to beat the crap out of me. He can't verbalize what is going on, he just knows he doesn't like it. I take him downstairs on nights like this so no one else gets woken up. It's frustrating...all I want to do is make him feel better. If I can just take on his pain myself. But I can't. All I can do is rock him and tell him it's him and me and it'll be okay. I was thinking about it a lot during this. This kid has no clue what it's like to be normal. All he has known from day one is pain. Headaches, neck pain and horrible pressure in his head. Maybe not all day everyday, but more often than he should. This SUCKS. I am getting more and more anxious for his MRI on February 18th. I want more answers. From there, we find a way to fix it. Until then, all you can do is take the nights like the last one at a time.

You and me kid...

Advice: The good, the bad and the just plain ugly

We all have been subjected to unsolicitaed advice at one time or another in our life.   People never hesitate to tell you what THEY feel is best for you and how you are doing things wrong.   Especially moms.  Good lord.  From the moment people can tell you are pregnant you get comments on your weight, get told how you better kiss sleep goodbye, someone will bring up that you may poop during delivery (Shout out to the person who said that to me my first pregnancy, that was my BIGGEST fear during my pregnancy  and I didn't poop, so suck on that lady!)...  so many things.   One you have your child, you are feeding them wrong, swaddling them wrong, you should do this you should do that.   Then it comes when you face something difficult like we are with Connor.   I've gotten some horrible comments and advice.  It is my fault he has Chiari because I vaccinated him, I am going to kill him because I wanted to wait to do the surgery until we had another MRI, I shouldn't have brought another child into the world because Connor has Chiari (which by the way we had no clue at the time I got pregnant or even after Everley was born that he had it)...   but with the bad there comes the good.  There are always silver linings, right?  Right???  Yes.... 

Here's some of the good:  

The peppermint and hand massages like I mentioned in the other post,  Coke flavored slushees... I was told they are good for headaches.  Connor woke up with an awful one a few weeks ago and I was desperate.   He wouldn't even let me massage his hands.  What did I do?  Drove over to the gas station and carried both a screaming Connor and Everley into the store.   Fumbled with the slushie machine and got a huge Coke flavored one...  struggled to get out my wallet and pay...and then I handed it right over to Connor.   It was really early in the morning so you can imagine the stank eye I got from the lady behind the counter and the rest of the consumers, but holy shit, it worked!  Plus, he loves slushees and he thought that was pretty awesome. 

My point?  Sometimes you have to listen to the bad to get to the good.   Even if something sounds a little bit strange, don't be afraid to try it. (with in reason, you don't want to hurt yourself or your child)  

I will keep accepting advice and tips.  I may not like everything I have to hear all of the time, but it's worth it for the good stuff.  The diamonds in the ruff. 

Extra sets of eyes

Never be afraid to go out of your comfort zone.  I'm not very forthcoming with personal things and rarely have anything serious or of substance to say, but when it came to this I just couldn't shut up.   Like I said in another post, I was just desperate to find anyone going through the same thing.  In the process, I grew extra sets of eyes.  Last night a friend sent me an article about Dr. Anderson at Columbia. 

“For the rest of my life I will never forget the words that Dr. Anderson first said when I sat in his office reviewing my daughter’s medical records, ‘This is a solvable problem.’” Tracee’s seven year old daughter Paige had been diagnosed with a Chiari Malformation 1 (CM1) and Syringomyelia.

This is a solvable problem

Solvable?  It can go away?  They can be cured in a less invasive manner?  Well eff yes!  Let's explor it.  I have nothing but time on my hands and I plan on find more out about it.   Does anyone out there have any expereince with Dr. Anderson? 

Here is another article about it:  http://www.columbianeurosurgery.org/specialties/pediatric-neurosurgery/


It's a wonderful feeling to know you aren't alone and there are people out there who also want to learn about this and want to help.   Don't be afraid to ask for help.  Ever.

This was made by a great woman named Karen.   I love it.  

First is the worst...

You know you love to be the first, first to introduce people to a new band, first to eat at that fantastic new restaurant, first to bring back pleather leggings... (Actually, you don't want to be first on the pleather leggings.  I thought I did until I wore them in class and every time I moved everyone thought I was farting), but you get my point.  Being a "trendsetter" is awesome.

NOT.

Connor is the first person I ever met with Chiari, so how could I go about getting advice and tips about what he was going through?  Who would hold my hand and tell me everything was okay because they know first hand?  Well, you go to the internet of course.   Through this medium I have "met" many, many people who have Chiari themself or have a loved one with it. And let me tell you, they are amazing.  So open to share and offer help and support. The more you search on the subject, the more people you find welcoming you with open arms.  Maybe this isn't so uncommon?  Ah, but it still is.   And this is where it's going to change.  Through my reaching out on the internet I was connected with The Conquer Chiari Foundation.  I want to set up an awareness walk.  I got my handbook today and I'll tell you, I am excited.   Terrifed, but excited.  I am very lucky to have a pretty good support system of people who adore Connor and are willing to help.  

Here I go! 

The waiting game

Connor is scheduled for his MRI on Februrary 18th.   This will tell us so much more.   Has his herniation grown?  How does everything look in his spine?  Does he need surgery right now, or can we wait and see how things progress?   So many questions on hold until this is done, but it's the next step.  So what do you do?  You wait.  Keep researching...keep reaching out to others... what else can you do?  If after this MRI his doctor feels Connor needs the surgery we will go ahead with it, guns blazing, balls to the wall, whatever analogy you want to use.   But this time I will not have doubt.  I will have something to compare his first MRI to.

Peppermint, my best frenemy.

I've been looking for things that help Connor with his migraines.  He gets them often.  They come on fast and their is just no consoling him.  They SUCK.  All I want to do is switch places with him.  But since I can't, I do what I can... figure out a way to help.  The best thing I have found so far is the scent of peppermint (lavendar helps too, but peppermint is the shit for Connor).   I read that peppermint was a good natural cure for migraines.   I went to Bath & Bodyworks and told the girl that worked there that I needed something peppermint asap.   She was puzzled, so I explained.  That woman spent 40 minutes pulling out everything with even a hint of peppermint.   We decided on the CO Bigelow Mentha lotion.  It is STRONG.   Sure enough Connor had a headache later that day.  A wicked one.   All he could do was scream and hit himself in the head.   I turned off the lights and got that strong, stanky lotion out and began to massage his hands.   I concentrated on the space between his thumb and pointer finger mostly.  A few minutes later, he wasn't crying anymore...soon after that he was ready for something to drink and then to be back to playing.  Not perfect, but better than the alternative.  The smell is kind of overpowering, it makes your eyes water and if you forget to wash your hands immediately and accidentally put them near your eyes or mouth you will regret it... but it works.   

Accupressure points for headaches

If you can't be like everyone else, be Batman.

So, I'm having a bit of a hard time swallowing the fact that Connor won't be able to play.   Connor was going to be my NY Giant.   He's big, fast, strong and has a wicked temper.  Perfect for football.  Except for the fact that a head injury can be fatal.  So what does this ellliimate?  Most sports.   Connor's neurologist told us that baseball, soccer, hockey, football and gymnastics are all out.   Well, what can he do?   He WANTS to be like his brother, but since he can't we need to find something else.  That something else will be golf.   This makes his grandpa quite happy.  As a matter of fact my dad, who Connor and the rest of the grandkids call Pop, called me to tell me he got his Golf Magazine in the mail and there was a feature about a Pro Golfer named JB Holmes who has Chiari and had the decompression surgery.  Well slap my ass and call me Sally..  Here is a man who suffers from the same thing, went through the surgery, had a bad go of it and is still out there trying.   What a good example. 

Connor is only two, we may find that he doesn't like golf, or any sports for that matter as he gets older.  But the point is, he has an option.  He may not be like every other kid.  He may never be like everyone else, but he doesn't have to be.   That's what I adore about this kid.  He doesn't have to be anyone but Connor.   This kid makes his own path.  

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....

My Montage 4/6/11 at OneTrueMedia.com

Connor Patrick

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