Holding on

Time is a funny thing.  There are days that I am running all day long doing errands, making sure every last item on my "to-do list" is done, and being sure my children are getting all the attention they need and want.  Then there are days when there is absolutely nothing on my "to-do list" except little odds and ends items that I know can wait, so I get to spend more time playing with my kids and less time "being an adult."

In the beginning of this summer I thought of thousands of fun things the kids and I could do over their nice long break from school.  Like most other people I know, I went onto Pinterest and found some fun arts and crafts, new games to play, etc. and had all these magnificent ideas on how to incorporate all the new activities with the old ones.

Well here it is, the last few days of summer vacation and we didn't make it through half of our list.  I am really fine with not having a "check mark" next to items on the list, but what bothers me is how quickly the time went this summer.  I know it always does, but this year seemed to go especially quick.

I was sitting in Kindergarten orientation for my son, who happens to be my youngest and I thought about how just 4 years ago I was sitting in the same room listening to the same speech for my daughter, my oldest.  As I looked around the room at so many new faces it was easy to spot the new parents because most of their children were clinging on to them.  My son, although he is extremely attached to me seemed to be very calm at orientation which I was so happy and relieved about, but at the same time I realized I was clinging onto him.  

I am not ready to let go of both of my children and have them be so independent yet.  Some of the parents who were there couldn't have been any more excited about having their child(ren) return to school.  Some parents with children who were going into Kindergarten and were only children or the youngest child in their families had parents that were happy about it being time to send the children to school.  

I don't understand this concept.  In a way I suppose I can see it, if parents are paying for day care, or if they are wanting to return to work without needing to work less hours because of needing to stay home due to a younger child.  Most of the parents I know usually have some sort of financial aspect as to why they are happy that all their children are off to school in September.  

It is absolutely the opposite way for me.  I have been with my babies everyday since birth.  I stayed home in intervals so each one had the same amount of time with me.  I have been a stay at home mom full time since January 2013, and although it is by far the most difficult job I've ever had, it has also been the most rewarding.  

I get to be with my children every single day.  I know every single thing about them.  I have been so very fortunate to have been able to be home with them over the years.  Although my husband and I did take a financial loss when we went from  2 incomes to 1, it was never an issue when we thought of the benefits we were getting in return.  There is nothing better than being able to know where your children are and that they are safe, healthy and happy.  

We definitely had our bad days, I'm sure my neighbors have heard my children fighting and me yelling at them to knock it off, but kids are kids.  Even a tough day at home is better than a good day at work.  

In just over a week and a half I am losing my days full of snuggles, hugs, kisses, giggles and everything in between.  I know it's only a few hours at school and the day goes by quickly, but I'm still not ready to let any of my time with my children go.  I'll even miss the fighting. I need my children as much as they need me.  I feel so lost without them around me.

I know a lot of parents, mostly moms (that I've talked to) who are going through the same thing.  The separation anxiety is already setting in for us.  Of course, being a mom, we have to hide it so the children won't feel it.  We need to be strong for them.  When we tell them what a wonderful time they will have this year, they need to believe it so they can have the confidence to get on the bus or in the car and walk into that school on their first day and every day thereafter.

When that first day comes and all the children are on that bus and waving out the window, I'll be putting on my sunglasses so they won't see the tears and when it pulls away, I will be a hot mess, that's for sure.  Some parents high-five, some smile and laugh that the kids are back to school, I don't. I turn into a blubbering fool. I hate this time of year.

Whether you're a high-fiver or a balling, sniffling, mess like me on that first day, it's always good to take the time we have left of the summer and really engage with your children.  Disconnect from your phone, computer, tablet, T.V., anything and everything else.  Go outside, go play with your children. Give them this last little glimmer of summer, they'll hold onto it longer than you think.  I know mine do, and so do I.  

Best of luck to all the children and the parents this year.  I hope it is a safe and successful year for all! 

:)

Anti-Bullying

With the cooler weather beginning to settle in, the leaves changing, and the stores stocked from floor to ceiling with school supplies, the inevitable is upon us.....Summer is coming to an end.  With Summer ending and Fall beginning, the children, teachers and parents are preparing for back to school time.  Some love it, some hate it.  Personally I hate it, as do my children.  But before all the kids show up at the school bus with their shinny new digs, new backpacks, and anxious grins on their faces, I am going to ask parents for one request; talk to your children about bullying.

My daughter has been bullied for the last 2 years and I have done everything from marching my butt down to the school every single day to talk to the teachers, students, and principal, talking to the mom, taking my daughter to the schools' social worker, taking her to a therapist to talking with school board members, writing a formal complaint, and asking to have an entire assembly on bullying throughout the school system.  Sadly, the school system failed my daughter.  

Although the school has an anti-bullying policy, the rights of the bully were better protected because he has "mental issues."  I of course, did everything I could to protect the rights of everyone involved, after all these are children, and sometimes they just can't comprehend their actions.  I did not in any way shape or form attack or want anyone to feel worse about the situation that what was already going on.  I know the bully probably didn't intend on hurting my daughter so much, but even though sticks and stones can break bones, name calling and bullying can and do hurt so much more sometimes.

Now we're heading into a new year and my daughter has an entirely new personality.  She has become so unsure of herself, has so little self-esteem, and will basically cling onto any "friend" that is nice to her, even if he/she is no friend at all.  We've tried every avenue we could possibly think of. We've gone through the school, therapists, friends, family, doctor recommendations, you name it, we've done it.  We praise her up and down for her good deeds and correct her when she needs it, but nothing too harsh.  We are trying to reinstate her self-esteem as best as we can.  However, the terrible bullying she has already encountered has beaten her down so much that I am so afraid she is going to stay like this forever, or at least until she finds her inner-strength, which she has to find on her own.  We told her it's there, but only she can truly feel it.

Why am I telling you this very personal information?  Simple.  When you are talking to your children about school this year, please remind them about bullying.  Think of your child being ridiculed and picked on relentlessly throughout the day.  Think of his/her little face and the hurt he/she would be feeling, the tears streaming down his/her face.  Think of the anger you would feel when you found out.  Now channel that into a positive conversation you can have about why your child should NEVER bully anyone else and if he/she sees someone being bullied he/she should tell a teacher or an adult he/she trusts.  It is so important to stop this horrible epidemic going on.

I pray that none of your children will ever be bullied, or become a bully, but if any of it every happens, please nip it in the bud right away.  The hurt, heartache and pain that your child will endure can last a lifetime.  

So many children who get bullied will not speak up if they are being bullied.  They are too ashamed, too afraid that they will provoke the bully even more or they will get in trouble for being a  "tattle-tale." So they endure the abuse, silently.  They will change over time.  You will notice they will have a whole new attitude, they will become angry, sad, they won't want to go to school, won't engage in activities at home or in school.  Essentially they will become a hollow shell of themselves, and that is so sad to watch a child go through.  You want your child to be strong, happy, playful, and above all to be a child...live his/her childhood, these other emotions will come in the adult years anyway...let them be kids.

We considered taking our daughter out of school when the bullying began, but what would that teach anyone?  It would teach the bully that he/she could control the population by being mean and picking on everyone.  It would also teach my children that running away would solve any problem.  I want my children to learn to stand up for themselves, face adversity and rise above it.  Hopefully this year they will be able to do so.

These days she has become very angry and impatient with a lot of things that ordinarily she wouldn't be.  I have the bully to thank for that.  However, if she gets mad enough, she'll stand up and argue, so it's a start I suppose.  However she is too young to deal with such nonsense.  

Please, please, please talk to your child about the affects bullying can have on someone and why it is so important NOT to become a bully and to SPEAK UP if he/she sees it or hears about it happening. I cannot thank you enough for helping me to end this and give a voice to the children who will not speak up for themselves. 

Check your schools or communities to see if there are any clubs that have any anti-bullying groups, and if not, start one.  Read your schools' policy on bullying and be sure to know if your child is having an issue, and if so, fight the policy until you get the action you want.  Please don't let any child have one more sleepless night.  No child should lay his/her head down on a tear-stained pillow because they are being bullied so horribly.

Thank you for taking the time to read this and talking with your children.  Thank you for making a difference.  

New Year, New Outlook

I'm not one to make resolutions per say, but this year I decided to get that "fresh perspective" on myself, so I really started to look at things in my life.  I realized that a core problem I have is following through with things.  It's always been a problem area for me and I know it's not something that's going to change overnight, but I'm really going to make it a goal for myself to be better at following through on things.

So, that being said, I've told my story of having Chiari Malformation and frankly I'm sick of it.  The whole damn thing.  I've met some awesome people who also have it, and unfortunately there just isn't a whole lot of light shed on it in this area.  It seems that the only people who know about it are the people who have it, and when they're diagnosed they have no idea what it is.  They're only taught what their particular doctor tells them which is usually very little because not many physician's specialize in this particular disease.

There is a Chiari Institute which is where the experts are, but it's in Great Neck, NY so if you're not living close to it, or have an insurance that will cover your cost of going there, your pretty much out of luck.

Fortunately, there is a whole other world out there of "Chiarian's" which is what people who suffer from Chiari Malformation affectionately call themselves.  There are a ton of support groups out there both online and some in person, but it varies by area.

Last year, I was lucky enough to be able to set one up in my area and I'm so excited to say that we have 26 members which is a lot in my eyes considering I was diagnosed 8 years ago and I met my first fellow Chiarian last year.  Now I have met literally hundreds online and a handful of wonderful people face to face, and it has made a world of difference.

I see Chiari in a whole new way, and 2015 is going to be a banner year, I am making sure of that.  I am hoping to get Chiari awareness spread all over my area so that when people ask "what is Chiari?" a fellow Chiarian may not have to answer, but a supporter may be able to.  Chiari is a debilitating disease, and there is no cure, except surgery, and that in itself really isn't a cure, it may help with the symptoms, but brain surgery is a pretty drastic measure to alleviate symptoms if you ask me.  Not all Chiari's are operable, and some Chiari's can be fatal.  Certain types are fatal, no question about it.

Chiari has a no outside look to it.  No one looks different on the outside unless the surgery was done in which case all anyone can see is a scar.  Often times it will resemble a zipper from the base of the neck up to the middle of the skull and then the "Chiarian" is now called a "Zipperhead" nice aren't we?! Brain surgery is rough.  It hurts, it's so scary, and the possibilities of errors and infections are endless.

However, Chiari is not recognized in NY state nor is it considered "disabling" so sometimes it's damn near impossible to get disability unless you have every doctor, lawyer, judge, witness, etc. on board and even then you may get denied. I am hoping that with a lot of support and marketing Chiari awareness all over the place, we can finally get Chiari recognized, but we'll need the numbers.

This is where we need support.  Support from fellow Chiarian's, support from our families, friends, co-workers, and communities.  Sometimes we just can't function.  Sometimes the pain is just too much to bear.  But with the support of our loved ones, we can make it through.  For 2015 I am challenging people to get educated about this disease, learn how you can help those who have it. While there is no exact number of how many people are diagnosed with Chiari per year, due to more advanced testing, the number of people becoming diagnosed with Chiari has been rising every year. Numbers are estimating between 300,000 to 500,000 per year. Empower yourself with knowledge about Chiari.  Help yourself, help others.  Get a new outlook for 2015, get a new perspective.  Thank you for reading. <3

Have a Healthy 2015!

Nostalgia

Being nostalgic is defined as being characterized by or exhibiting feelings of nostalgia.  Nostalgia is of course defined as a sentimental longing or wistful affection for the past, typically for a period or place with happy personal associations.  Translation: something good happened once upon a time in your life so when you reminisce about it you get all happy and joyful until you realize you're merely daydreaming and then reality slaps you right across the face and says "wake up friend, that was then and this is now."

So why bring this up?  Well every now and again everyone gets sucked into that "remember when?...." phase with a friend or family member and you start going on about "the good old days" and before you know it you're back over a decade ago laughing and joking around.  Then without warning your shoved into reality by a screaming child or a nagging boss.  

Or maybe you hear an old familiar song on the radio from "your generation" (and it pains me to write that phrase) and suddenly you're flashing back to a romantic encounter with that special someone that you swore you'd always be close with.  The song playing in the background, his arms around you, all the right words flowing from his mouth and right into your ear.  It was meant to be, he was your soul mate.  Flash forward a few years, you are no more than a line in a song that he couldn't care less about and you would love nothing more than to take the ball of your heel and jam it into his "manly" parts with more force than a rocket launching into space. Halfway through the song you realize this and have a sudden urge to not only change the station but to throw the radio through the nearest window, watch it fall to the ground and smash into a million pieces.

I spent a great deal of time going through some old photo's and wondering "what the hell was I thinking?!" on numerous topics.  Everything from clothing, to the lack of hairstyles, to who the hell are those people?! However, I have the same core group of the most amazing friends, and we had some incredible times that I will be forever grateful for.  Those are the memories I will always be happy to look back on.  

Everything that I have done, gone through, been a part of, has made me the person I am today. Whether it's good bad or indifferent, I am who I am, and I am grateful for all my experiences. Some people have definitely come and gone and that's to be expected with life.  But as I sat with my dearest friend on my birthday this year sipping some apple moonshine that she had bought for me after a (very) brief taste test I realized that even though there will be times when that ridiculous nostalgic feeling may creep up and I may wonder why this or that happened the way it did, it doesn't really matter.  I have the best people in my life and I am so lucky to have them share my life experiences with.

The power of chiari....

It's been a while since I've written about my chiari, but I get compliments all the time from people when I do or when I listen to other's stories.  So I am writing this for those who have struggled, who are struggling, those who are helping someone overcome their chiari, and everyone in between.

First off, you'll notice that I am not capitalizing the word chiari, being that it is a proper name, it should be according to the "rules" of the Enlgish language.  I however no longer am giving this horrible disease that much distinction or power.  A small and somewhat meaningless action to those who have not suffered from this disease, but if you have, just taking away a smidgen of it's power is worth a celebration.

After I was diagnosed with chiari malformation in 2006 I didn't really think about the toll it would take on my life as I grew older.  Now that I have two small children and have put my body through so much over the last 8 years it has definitely taken quite a chunk out of what was supposed to be the "best" years of my life.

I am supposed to be able to run around (and keep up with) my children.  I am supposed to be able to hike up mountains with my family, to go on adventure walks with other young couples and their kids.  I am supposed to be able to keep up with other people my age and not be drained after trying to clean up my house after my kids.

I am not lazy, I am not having a pity party, but I am also a realist.  I know I am not able to do the things I want to do and it, to be blunt, sucks.  It sucks a lot.  And some days I have myself a little breakdown and a cry fest on my couch apologizing to my kids for being in pain and unable to do the things with them I know they want to do.  Some days are better and I am up moving around a lot better and I can manage the pain a little better and we have a lot more fun on those days obviously.

So, yes I have bad days, yes I have good days.  I take care of my children with all the love and support I can give them and I will always push myself to be the very best for them.  I will never be the person I used to be and that just is what it is.  I have to learn how to forgive myself for that.  The question is how?  Here's a start:

This year I started a CNY chapter for Chiari and EDS sufferers because I feel the best thing we can do is support each other.  I have watched so many purple candles light up Facebook recently and it just breaks my heart each time.  The lit purple candles represent a Chiarian who has lost his/her battle with chiari.   Wether you know the person who passed on personally or not, the common bond of knowing how bad he or she suffered and knowing the amount of fight he or she had to do..... it's wrenching to know that he or she lost the battle, the only comfort is knowing that the pain is over.

The power of chiari is immeasureable.  It takes away so much from those it affects.  Once you are diagnosed, the life you once knew is completely flipped upside down and it will never be the same.  All of the sudden everyone is looking at you different, everyone needs to be tested, people want to start poking you with all sorts of needles, doctors want to touch your brain for Pete's sake!

However, with the power of chiari comes a whole new wave of support from people just like you.  They know exactly what you're going through and they will help you through everything you are going through every step of the way.  You are not alone.  The best thing we can do for one another is support each other. We need to get the awareness out to our communities and let those who are silently suffering know that we are here for one another.  We need to show our physician's that we need the support from them as well.  We aren't just a name/number on a chart.  We are real people with a real disease and just because we may not LOOK sick on the outside, our pain and suffering is very much real.

The pain, sadness, hurt and anger will always come and go.  It is something that will never go away.  I will not say that I don't face those demons every single day.  However, I will not give my chiari any more power over me than it already has.  I am taking back my life and using the negative from it and turning it into something positive.  If you are suffering from it or know someone who is, please know, you are NOT alone.

Losing Battle

"Chose your battles wisely" or so the saying goes, but lately it seems as though the battles are not my choice and I'm not on the winning side.  Everyone has their things they go through on a daily basis, some more severe than others.  Who is anyone to judge anyone else on what they are going through or how they should feel about it.  I know people mean well when they try to make others feel better but if I hear one more preaching sermon from Joe Blow I may just slap someone.  Sometimes I just want to be able to go through the emotions of what I'm going through and let that be ok. 

It's been a few years coming and I knew that I would have to face it eventually but I guess I felt that if I didn't face it right then or really at all, I wouldn't have to do it.  And part of me feels selfish because I have 2 amazing children and there are families out there who can't have their own children and they would do anything to be able to do so and I've already been able to do so.  Although having them didn't come without almost losing my own life, but don't think for a second I wouldn't do it all over again because I would. I would do anything for my children, anything at all.

I always thought I would have one more.  But that is just one battle I am not going to win.  All my doctors have agreed I wouldn't survive another pregnancy or delivery and I can't risk leaving my kids behind.  So I went to the doctor yesterday and I got the call today that the surgery has been scheduled for 2 weeks from tomorrow.  It's official that one chapter of my life is closing and I need to move on to the next one.

In one way I suppose it's something very positive.  It's one more way I can cement trying to be here for my kids as long as possible.  And now that they are getting older we can take those fun family vacations now that they are more independent.  With the two of them I only need to divide my attention between them which is easier than with more children.

In another way, as a woman being able to create a life and have it live inside you for almost a year and have that bond with you is something I just am not ready to give up.  For someone else to make that decision for you just sucks.  For other people to tell you that this is what you have to do instead of you decided your family is complete sort of leaves a void.  I have a wonderful family but it's hard to explain to my children when they ask me why we don't have a baby or why they can't have a baby brother or sister.  To tell them mommy can't and have them ask why not is something they don't understand and I don't go into so I avoid it as much as possible.  Luckily they are easily distracted by something more fun to do or to talk about.  

Please don't misunderstand I am more than happy with my family.  I wouldn't want to change a thing.  I am more depressed that someone else gets to decide when my family is complete, when my body has had enough.  I've fought this battle for so long and so it seems I've lost.  I suppose it's on to the next one....

The Inevitable

I try really hard not to be pessimistic about my health conditions and although I know that humor won't make any of them go away it's definitely something I use to lighten the mood that surrounds the never-ending wake of bad news that follows with each and every doctor appointment, phone call, "episode", etc.

My family and friends ask me all the time (bless their hearts) how I am doing, how I am feeling and if they can do anything to help.  My answer is always the same and always surrounded by some sort of smart-ass comment.  We laugh it off and I always try to revert the conversation to a different topic.  What many of them have figured out by now is that right beneath the surface of my not-so-detailed answer to their question is my massive meltdown filled with anger, pain and resentment that is rapidly rising to the surface.

With each new day comes new trials and tribulations and while each and every one of us has to face them we all take a very different approach in doing so.  But at some point when things get just too much to bear we lose it.  I can honestly say I've hit that point only a few times given my diagnosis's.  The hardest part is that with each new symptom, each new issue, the "I don't know" result from each physician and the inevitable outcome is the hardest pill to swallow.  We all have to face facts that at some point in life our bodies will fail and we have to except our fate.  It's the ride we must take to get there that I'm having the issue with.

Over the last few years I have been through some pretty craptastical health issues as have most people, but the whole purpose of going through all of them was so that I could be around for my children.  I want to raise them, watch them grow into wonderful, healthy, happy adults, be there for them throughout all of their lives. Cheer them on as they play sports, hold them when their first love hurts their feelings, tell them how proud of them they are on the day they graduate, dance with them at their wedding's, help them along as they have children of their own...do all the things a parent gets to do.

Last night after yet another awful "in-explainable" yet "troublesome" issue occurred I laid with my son to hold him as he drifted off to sleep.  Right before he drifted off he turned to me and pulled my arms around him and whispered "hold me mommy, I don't like it when I can't feel you". I buried my head into his back and told him "I will always be here."  But as he drifted off to sleep I sat there and cried because I can't keep that promise.  What if I'm not there for him?  I have no control over what's going on inside my body and at this point my physician's can't figure it out so really it's just a guessing game.  I know what I have already diagnosed but there are so many other underlying possibilities it's unreal.

And what about my kids?  Did I pass these awful things onto them?  It's just so unfair.  I would take everything a million times over as long as they don't have to have one ounce of this.  I wouldn't wish any of these things on my worst enemy, let alone my very reasons for being.

I realize this is a pity party, but today is just that kind of day.  I know that there are people out there who are far worse off than I am, and to those people I can't imagine how you do it.  I don't need, want nor am I looking for sympathy with this blog, this is just a way for me to get out some of my feelings.  I always get so many compliments on how strong I am, but really it just depends on the day. Some are better than others as you can tell.

I hope for the best for all but I'm realistic as well.  I supposed I could end this is on a lighter note since this is definitely NOT one of my more favorable blogs....the snow has stopped here in good old NY and I'm guessing every school that has closed is probably really pissed right about now.  Happy snow day to all the kids out there if you have one today :)