Conquer Chiari Walk Across America 2014

Why do we walk?

Charities walks are such an amazing way to get people together to raise awareness and funds for research for whatever your cause may be. You get people who may not have any interest in what the cause is at the time but si...gn up because they like to participate in organized walking/running events. A lot of times those people who knew nothing of the cause walk away with new information that they may share with others. They donate and have family or friends sponsor them which goes right back to the cause. Charity events are eye openers for everyone involved. 

 Why do I walk? 

 On April 6, 2010 Connor Patrick was born at Lejeune Naval Hospital in NC. I did not get to hold him until he was 45 minutes old and stable. Connor had lost some oxygen during birth; we never got an explanation why. Once I held him all my fears melted away, for a few days at least. You see Connor was a very, very unhappy baby. We tried everything, gas drops, white noise machines, every colic remedy under the sun. His doctors told me it wasn’t him, it was me, I had post-partum depression. Who was I to argue with a doctor? What do I know? So we just tried our best to make him as happy as possible. Time passed and Connor was not hitting milestones. We had him evaluated and again, were told there was nothing wrong. Connor was still very unhappy and would cry for hours sometimes like he was in pain. I knew something was wrong, but as always, got dismissed. Time passed and things got seemingly better.

 Fast forward to May 4 2012: Connor was outside playing with his daddy and big brother while I was cooking dinner. It was warm, very warm and Connor did not want to come in. My husband, Chris carried him in doing his silent cry that we were told was just Connor being difficult, and placed him on the floor as he would any other meltdown…normally Connor would just continue to cry or walk into the living room. That day was different. I heard a plop as Connor’s body hit the ground and he started to convulse. I can’t tell you how long it was that he was down but it felt like forever. When he stopped shaking he was blue and not breathing…. I screamed for Chris to call 911 and started CPR to no avail. My husband was able to get my neighbors, one of which was a former police officer who took over CPR. I will never forget the EMTs getting there, they looked at my neighbor and looked at Connor and the one just shook his head. I remember screaming and running after them to the ambulance. The ride felt like it was taking forever. But before we were off base they said Connor was breathing. My baby was alive. He was just very out of it. We spent half the night in the hospital. CT scan, blood work and everything else was perfect. They told us it was a fluke. This would probably never happen again. Not even 24 hours later we were in the same spot. Connor had another seizure.
I had to fight with the Naval Clinic here at Cherry Point to get Connor a referral to a neurologist. They did not feel it was necessary, because you know, a 2 year old having two grand mal seizures within 24 hours is completely normal. I realized then that I have been fighting for an answer since this amazing child has been born and I will be fighting until the day that I die, so again, I fought and fought hard, but Connor was sent to an amazing neurologist who took the time to listen to me. She was the first person to ever listen to me. We had an EEG done first, it was perfect, but this doctor also agreed something was off with Connor. She ordered an MRI and weeks later we received Connor’s diagnosis. Chiari I Malformation. Well what the heck is that? I had no idea. I wasn’t even pronouncing it right for a week. From that moment on I spent every day learning about it. Finding ways to talk to others who have experience and could give me insight. During this time I came across the Conquer Chiari Foundation and through them organized a location for their walk to help raise awareness and funds for research. My first year organizing was last year, 2013, and will be going at it for the second time this year. This year’s walk will be held again in Emerald Isle, NC on Saturday September 20th.

 What we need.

 As of now I am looking for people willing to volunteer their time with setting up the walk. I am in the process of getting corporate sponsors, so if you have a business and would like to sponsor us, that would be amazing (and a tax write off for you.) We are also in need of door prizes, bottled water donations and things of that nature.   

 If interested, please email
Jodi Thomas 252-665-2770 or email JAThomas813@yahoo.com
For more on Connor:
http://www.facebook.com/ConnorVsChiari
http://youandmekid4619.blogspot.com/2013/01/to-sum-it-up.html
For more about Conquer Chiari:
http://www.conquerchiari.org/index.htmlSee More

"A mother's love is forever; time, distance, hardship...all fall before the strength of her love."

"Not everything is a joke."

"Not everything is a joke."  No, it's not.  Trust me I know that.  But I don't see what's wrong with having a little humor about situations.  You can't control everything but you can control your reaction to it.  Of course I have whoa is me days, we all do.  But I generally prefer to make jokes about most crap that goes on.  What the hell else are you supposed to do? Shrivel up and die?  That seems to be one thing that really offends people about me. My humor about life.


September 13, 2012 I went for a 3 mile walk as usual. By the time I made it back to my block I could barely get in the house. I crawled upstairs and laid in the shower thinking I had kidney stones for the 10th time.  I tried to ignore it as much as possible but the pain was unbearable.  I never go to the hospital.  I have to be forced.  Thank god my husband forced me.  It turned out my intestines were tied in a knot.  Had Chris not made me go to the hospital, I would have died.   September 14th I had emergency surgery to repair it.  As I was laying there waiting to go back there was so many things going on in my mind.  What if I never saw my kids again? What would their life be without me?  What about my parents? Would the recover from burying their child?  I had my dad and my husband there with me and they both had the worst looks on their faces.  I will never ever forget their faces.  Chris was a mess and didn't really know what to do.  He couldn't even speak.   My dad, despite that look on his face, stayed strong like usual. He talked to the doctors and made sure I knew what was going on.  I obviously came out of this mess and a week later was able to go home.  I went home different.  I no longer cared about opinions of people.  The only opinions that mattered were those of family. Making sure that they were as happy as possible at all times and never letting them forget how much I love them. 


2 weeks later, we were  handed Connor's Chiari I diagnosis.  Poetry, yes?


Here's the thing about me.  I will probably offend people.  It will never be intentional.  My humor can come out at the wrong times.  I can say the worst things at the worst moments.  But my intentions are always good.  It is not your job to understand me just as it is not my job to change who I am to please  anyone besides my loved ones.  My world consists of those under this roof and the rest of my family.  Anyone else is a bonus.  (Who doesn't love a bonus?)


Things happen in life, you can be bitter forever or you can be bitter in chunks and choose to be happy the rest of the time.  What is your choice?





September 2012












“My great hope is to laugh as much as I cry; to get my work done and try to love somebody and have the courage to accept the love in return.”  

Greetings from a shut in.

Lately we haven't been going out much. We do what is necessary, doctors appointments, grocery shopping, and Connor's speech and OT appointments.  The weather was a good excuse.  But now it's warming up again and I won't be able to use it for much longer.  As any special needs parent knows, making it through the day without huge incident is a big deal. If I can get through grocery shopping without a meltdown it is a miracle. I always wonder what people must think.   "Look at this woman with the screaming child bribing him with that box of mini muffins, she is such a piece of shit!"  I really do try to get groceries and things like that when my husband is home so we can either divide and conquer the store or one of us can stay home with the kids and the other goes shopping.  But that is not always practical for a military family. Sometimes he is just not here.  Sometimes he has to work 18 hour days and I really need some damn milk in this house.  So what do I do?  I get my shit together and go shopping.  People are going to judge.  It happens.  I get it. Connor looks "normal."  They probably just think he is a brat.   Trust me, I'm already embarrassed that you are staring.  I'm embarrassed if you aren't staring.   I'm not embarrassed of Connor though.  I'm embarrassed of myself.  I'm embarrassed that I worry so much that people are thinking of us in Wal-Mart.   It's effing Wal-Mart... why so serious?   But after you have to listen to a parent who has no fucking clue what it is like to raise a child with special needs tell you how you should discipline them, and what a disservice you are doing by not doing a b or c.... you start to build up a wall.   I will not beat my child, I'm sorry.   I can't do it.  I won't even beat my "normal" children.    But for Connor? Never.  1.  If I slap him for hitting, doesn't that make me a hypocrite? 2.  He just won't get it.   All he knows is that I'm hurting him and not the reason why... 3.   He is three years old.  That is still a baby in the grand scheme of things.   So please, keep your stupid opinions to yourself.   


People always have so many opinions on what you should be doing and how they would do things but they honestly have no idea. Just because you fancy yourself a medical professional, or you read an article, or you saw something on Dateline does not make you and expert on special needs children.  I have one and I am no damn expert.  I am a Connor, Luke and Everley expert and that's about it.   You never know what YOU will do until you are in that position.   I was so guilty of judging.  Connor is here for so many reasons and one would be to let me know that I needed to slow my roll.  There is no such thing as a perfect child.  I don't even think there is such a thing as a "normal" child, which is why I always put it in quotations.  (for those who aren't quick enough to pick up on that.) 


Don't get me wrong, some kids are just wild.  They act up in stores, scream in restaurants and in general just like to raise hell.  Then there are kids like Connor who truly can not help it.  It's hard for a stranger to decide which one is which and certainly not their problem to worry about it. Perhaps we don't have to be so obvious with our staring?  Feel free to judge, we all do it, but maybe every once in awhile you can keep it in the back of your head that some kids are slightly different and that mom you are giving the hairy eyeball to may just want to get through the store without crying today.  Just food for thought.









"Kindness is the language which the deaf can hear and the blind can see."

The paths we take....

What lead you to your path?  Have you found it yet? Are you where you pictured yourself to be?
Honestly, I am not where I thought I would be at all, but I wouldn't change it. 


Growing up they always ask you, what do you want to be? I figured I'd be living in Manhattan with some fantastic job. But life happened and I put off college. Instead, I went into healthcare.  I had my CMA back home in NJ and worked in the field.  I loved it.  But after I had my oldest, Luke, I let my certifications expire.  After Connor was born I went back and got my CNA, but my heart really was not in it.  I took some time off and was going to go back, and then the other shoe dropped.  If you have read my other entries you know a lot has gone on with Connor.   I can not leave him to go work in a 9-5 job so I went back in May of 2012 to get my bachelor's in business, which to date I still completed.  Student loans are stacking up, but I know I'm doing what I want to do.  I am going to finish and I will open my store front.  I will never have to leave Connor with anyone.  I will never have to worry that he will have an apnea episode that a sitter or daycare provider will miss and I will lose him.  Being 30, with three kids and one on the way and sitting at school for a four hour class that starts at 6pm is rough, but that is my path.  That is what I have to do to get to my end goal.
It's exhausting to say the least, but very much worth it.  We all have our paths.  Connor is moving along on his quite nicely.  He is doing amazing in Occupational Therapy, I can see so many improvements.   He started speech therapy today as well.  I am very confident that by the time kindergarten comes, Connor will be ready, just like everyone else. 


All I know is when it is time for me to graduate, my main focus when walking across that stage will be my four babies in the audience with my husband.  They are what it's all about.  They are what molds my path and what makes my dreams come true.












“Not I, nor anyone else can travel that road for you. You must travel it by yourself. It is not far; it is within reach. Perhaps you have been on it since you were born, and did not know.  "

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."