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.