Everyday Chaos

Happy Mothers Day!!!

Today was one of the best Mothers Day ever (as Victoria would say). It was a beautiful day spent with my husband and children tinkering in my gardens. For me there is nothing better. I hope today was special for all the Moms out there.

 

I found the story below on Pinterest and for me it sums up not just being a woman, a wife but a mother as well.

 

A little boy asked his mother, “Why are you crying?” “Because I’m a woman,” she told him. “I don’t understand,” he said. His Mom just hugged him and said, “And you never will.” Later the little boy asked his father, “Why does mother seem to cry for no reason?” “All women cry for no reason,” was all his dad could say. The little boy grew up and became a man, still wondering why women cry. Finally he put in a call to God. When God got on the phone, he asked, “God, why do women cry so easily?” God said, “When I made the woman she had to be special. I made her shoulders strong enough to carry the weight of the world, yet gentle enough to give comfort. I gave her an inner strength to endure childbirth and the rejection that many times comes from her children. I gave her a hardness that allows her to keep going when everyone else gives up, and take care of her family through sickness and fatigue without complaining. I gave her the sensitivity to love her children under any and all circumstances, even when her child has hurt her very badly. I gave her strength to carry her husband through his faults and fashioned her from his rib to protect his heart. I gave her wisdom to know that a good husband never hurts his wife, but sometimes tests her strengths and her resolve to stand beside him unfalteringly. And finally, I gave her a tear to shed. This is hers exclusively to use whenever it is needed.” “You see my son,” said God, “the beauty of a woman is not in the clothes she wears, the figure that she carries, or the way she combs her hair. The beauty of a woman must be seen in her eyes, because that is the doorway to her heart - the place where love resides.” Author: Unknown

Happy Mothers Day!

 

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Lost and Found

(image from Botgirl's Digital Playground)

For starters I am not usually one to sit back and analyze what I have done, what I should have done, what I could have done, etc.  My motto is step up to the plate and take a swing - but don't stand there and try to account for every possible action and it's opposite and equal reaction. 

My year of change and quiet reflection has taught me that sometimes stepping back and taking a time out and thinking things over isn't a bad thing.  Reflecting on how you arrived at this point can be insightful.  Who knew? 

2012 wasn't a horrible year by any stretch of the imagination but it was a challenging year.  It was a year that brought together a culmination of events that in all honesty knocked me on my butt.  I lost my nerve, my daring and my attitude all in one year.  I wasn't just tired, I was exhausted.  At the end of the day, I turned things over to others and checked out for a short little bit.  I took the time to think about what I wanted, what I needed and why I was at this point.  

I realized that somewhere along the way I lost me.  I lost my identity as a just me.  I was Alex's mom, Nick's mom, Victoria's mom and Steven's wife and that is how I thought of myself.  Don't get me wrong, those roles are my favorite roles in life.  I have always loved being a wife and a mother.  I came at both with way too much baggage from my own childhood and in order not to repeat my past I threw myself into being a wife and mother, but espicially into being a mom.  I willing shed my identity of me for an identity of Mom.  I loved my days at home with the kids, the art projects, the cuddle time, the birthday parties, the good and the bad - I had wanted this for so long and I was hell bent on being the best mom ever.  I never wanted my kids to look back and say I wasn't there for them or I was too busy for them or any other accusation that I have thrown out to my own mom over the years.  My relationship with my kids was going to have a rock solid foundation. 

Even when our life unravelled with EDS and Chiari, the kids always came first.  Throw kids with special needs into the mom identity and the identity becomes even more deeply ingrained.  I was going to make sure they had everything they needed not just to be OK despite EDS and Chiari but to be everything they wanted to be despite EDS and Chiari. 

No matter what you are doing you can only go full tilt for so long before you hit a wall.  The faster you are going when you hit that wall, the harder you will fall and the further you will bounce.  I wasn't going that fast when I hit the proverbial wall, but it was still a substantial hit.  I am grateful that I hit the wall as hard as I did because it forced the wind out of my sails and made me to sit on the sidelines and think for a bit. 

I needed to get physically strong again and so I started working out more.  More time to think despite trying not to think.  The workout time was mine and mine alone and I realized I liked having something that belonged just to me.  From there I started thinking about where I had been for the last few years.  Who I was and what I wanted.  I realized I had no answers to those questions.  I couldn't articulate who I was or what I wanted without involving some aspect of motherhood.  Even being a wife had fallen to second place.  (Sorry for that sweetie.)  I was floored. 

From Kindergarten on I wanted to be an attorney or a writer.  I knew at that age where I wanted to go and what I needed to get there.  At 42 I was sitting and trying to figure out how to get back to the place I was in Kindergarten when I was able to firmly announce to a guidance counselor that I would be one or the other, no ifs, no ands, not buts. 

Taking time for me was something that I thought was selfish.  I work and should be spending free time with my kids and husband.  But Steven insisted that I needed to start doing things that didn't involve him or the kids even if it was just going to a Zumba class or out for a run.  The more I did for myself the more I wanted to do.  When I looked at my family I realized that I was doing something good for them too.  I had more energy, I was happier, we were finding a better place all around. 

I told Steven I had lost myself somewhere along the way.  He said he knew that because he had been missing me for some time. 

I still love being a Mom and a wife.  For me those parts of me will always be the most important parts of my life.  I am still learning how to take time for myself and nourish me.  I still have pangs of guilt but then I look at my family and I see how well we do when we all do things that inspire us individually and I walk out the door to my Zumba class or I walk into our gym and take time to workout. 

I have found most of me.  I am still working on finding the rest.  For the first time in a long time I can articulate who I am without involving the word mom.  I have accepted that is not a bad thing.  I am who I am and I have many different hats to wear and roles to play and each one is important.  At the end of the day it is how I balance all of my hats and roles and how I blend everything together.  I don't plan on losing myself again. 

Christmas 2012

Yes, I am late in posting so many things, but I am working on a year in review post so that should cover my delinquency.  However, here are the Christmas photos for this year.

This was the scene that greeted us through our kitchen bay window after Mass on Christmas morning.  It looks like Santa's reindeer touched down on the neighbor's rooftop.  Of course this led to a discussion of whether or not we should check our rooftop - parents veteoed that idea.


The teenager does smile - just not first thing in the morning when he has to put on a suit and tie - Sigh.

Even Murphy was on Santa's good list.

Hope everyone had as wonderful a Christmas as we did.

Ceilings

Tis the holiday season which of course means we need to go and pick out a Christmas tree.  From our very first Christmas together under the same roof, this tradition has inevitably resulted in Steven and I agreeing to disagree. 

The process goes like this:  I find a tree, fall in love and want to take said tree home.  Along comes my husband who evaluates the tree for all levels of worthiness and then deems it unacceptable.  Of course I have to question this harsh judgement because after all I am now in love with this tree and just like every teen-age girl will tell you I cannot live without the things that I love.  My ever patient husband (or at least he was for the first few years) walks me through his list which normally is one point - it is too BIG.  Then he proceeds to point out that the height of the tree exceeds the height between our floor and our ceiling in any given dwelling in which we reside.  Of course I have to counter with how could he possibly know how tall the tree is ... I mean it's not like he brings a measuring tape with him (well not until this year).  He points out that I have always had problems with estimating height, width, length etc.  Well of course now he is impinging my spacial relations capabilities so the arguement has to escalate and I have to have the tree that I am in LOVE with. 

Over the years I have won some and I have lost some of these battles.  I even talked him into a 10 foot tree one year for the playroom - it fell over with ornaments and lights on it and kids in the room.  We have not repeated that little episode - although the kids and I did try this year. 

So, this year (19 years together folks - the man should know by now) we headed out to our favorite Christmas tree place.  Steven starts to brace for the arguements as soon as we pull out of the driveway.  he made a few random comments on the drive.  I ignored them.  Then we pulled into the Christmas tree place and every tree there was beautiful and HUGE.  The kids and I wanted at least one 12-15 foot tree but we were told NO before we even got out of the car.  That didn't stop us from looking or begging - but Steven stood firm.  He asked me again what the height was between our living room floor and the ceiling.  I replied 9 feet because well that is what the builder told me nearly 15 years ago - or that is what I remember as the builder telling me.  Steven agreed so he must have heard the same thing.  He then steered all of us to the more reasonable trees - i.e. the ones that will fit between our floor and ceiling.

We looked and we liked several.  We wandered back to the really big trees.  Victoria picked out the tree for the front porch.  We looked some more.... And then .... there it was ... the tree we were destined to have.  I FELL IN LOVE.  It was perfect.  It was perfectly round and full and green and beautiful.  It was everything we could ever want in a tree.  Of course Mr. Practicality insisted that it was too big.  I think he now throws that line out there just as a force of habit.  We all told him it would fit.  The owner even told him it was a 9 foot tree - 9 foot tree and 9 foot ceiling it all works.  O.K. so you have to take a few inches off that's why God gave man the foresight to invent chain saws - and guess what?  The tree people had a few chain saws on hand.

But no we couldn't just decide that this beautiful perfect tree needed to come home with us because I LOVED it - no we had to negotiate further.  We negotiated to the point where the owner brought a tape measure over to prove that this truly was a 9 foot tree.  Finally, after a few close calls that someone else might claim my LOVE, Steven agreed to get the tree.  We had it tied onto the car and off we went.  Oh happy day!

Now, once we got home a few things came to light.  First, we have an awesome 13 year old who is 5 foot 6 inches tall and into weight lifting.  This child cheerfully helped his Dad cut the tree, bring it in and try to get it up in the stand the first time.  The tree barely made it to a standing position before Steven asked me to come into the living room for a sneak peek.  My LOVE was bent over and squished.  Well, the tree people must not have cut off as much as they said.  Narrowed eyes and Mr. Perfect's response:  I watched them measure and cut it.  My response:  So?  I was trying not to provoke further since things weren't looking good for me.  After the next removal of another 6 inches and further failure to get the tree to fit in the space between the ceiling and the floor, Steven went and got his trusty measuring tape. 

Apparently, the builder lied - we have 7 1/2 foot ceilings.  Somehow this is my fault.  According to Steven and Alex I am never to pick out the tree again.  Nick and Victoria are still with me and though we lack the sheer muscle strength of Steven and Alex we do have the majority of the vote.  Majority rule and all that - until I am in the minority which will most likely occur when Nick hits 13 - I have 4 more years in power.  After that Victoria and I will have to rely on our persuasive skills (i.e. temper tantrums here we come).

A few morals in this story.  First, it is awesome to have such great kids.  It is really awesome to have a really strong 13 year old.  Thank you Alex. 

Second, maybe every now and again Steven is right about that whole spatial relations thing.  I said maybe.

Third, perhaps I should try to fall in LOVE with trees that will fit in our home.  I said perhaps - I still think Nick's suggestion of expanding the house to accommodate our dream tree is within the realm of reasonableness.

In the end though everyone agrees that it is the perfect tree and it was worth all the hard work and negotiations.

The Newest Member of Our Family

We recently added a new member to our family - Murphy.  We brought our little munchkin home almost two weeks ago.  He is such a little sweetheart with lots and lots and lots of personality.  Here are some photos of our Murphy.

 

Nick watching Murphy eat his shoes.

Victoria enjoying Murphy.

 

I love all of the smiles that Murphy has brought to our home.

  

 

 

 

Murphy has brought so much happiness to our home.   

 

 

 

 

 

Looking Back and Moving Forward

A year ago yesterday, we sat in Dr. Keating's office and listened as our world came to a screeching halt.  A year later, that weekend, that day, that moment, is still fresh and reading the words that I wrote a year ago still makes me teary eyed.  I doubt there will ever come a day when I can read that entry or any of the entries leading up to and after surgery without tears.  But that's O.K.  Remembering is necessary - not easy but necessary.

So much has changed in a year and yet so much has remained the same.  As we prepare for our next visit with Dr. Keating and start the MRI process again, reading my entry from May 1, 2011, reminds me that we can handle the really hard things in life as a family.  We can walk through the bad together and get to the good. 

Victoria and I marked the one year anniversay of being told that she needed brain surgery by participating in the Walk for Babies.  When I signed up for the walk months and months and months ago, I didn't make the connection to the dates. 

Not once during or after the walk did Victoria complain about leg pain.  I was so shocked that she walked three miles without mentioning leg pain that I asked her if her legs were bothering her last night or had bothered her during the day.  The answer was a resounding no.  A year ago leg pain was a constant for her.  There were no activities that she could do without mentioning the pain in her legs.  She was even skipping dance recitals due to leg pain.  To see her do the Walk for Babies this year without pain is amazing. 

Below is blog post that I wrote on May 1, 2011, telling the world that our beautiful little girl was going to need brain surgery. 

I don't know how to start this post - but then again I don't know to handle the situation we are in.  With Chiari I Malformation and cranial cervical instability and herniated disks - brain and or back surgery has been a possibility looming on our event horizon for three or four years now.  We found out on Friday that living with a possibility is completely different than living with a definite reality.

What started out as a yearly trip to Annapolis to see Dr. Keating turned into one of those moments in time when you face a life defining moment.  Dr. Keating told us that Victoria was going to be last because we had a great deal to discuss.  I didn't think too much about the statement.  Victoria always goes last because she has a Chiari I malformation and we always have a bit more to discuss with her.  So we got through the boys check-ups without any major issues (I will update on Alex and Nick later).  Throughout the boys exams, Dr. Keating was asking us about various issues caused by Chiari and Victoria.  I have been seeing a bit more swallowing issues with her, but we have been dealing with swallowing issues with Nick for so many years, that Victoria having difficulty swallowing just didn't send up red flags.  All I can say is hindsight is 50/50.

After  the boys were done, we went into Dr. Keating's office to view Victoria's scans.  He pointed out two major issues and I could feel my heart stopping with each word.  We have been doing this for years and even though the kids haven't been candidates for surgery I have kept up with the problems and issues caused by Chiari, syringomyelia, tethered cord etc., etc., etc.  So when Dr. Keating pointed out the syrinx on Victoria's MRI my world stopped spinning.  

A syrinx is a fluid filled sac inside the spinal cord.  Victoria only agreed to participate in a cervical spine MRI and a brain MRI prior to our appointment (and that cost me 6 new Barbie dolls!).  We know that she has a syrink that begins at C-6 (the 6th cervical vertebrae) and continues to T-2 (the second thoracic vertebrae).  There are 7 cervical vertebra so this isn't a huge syrinx.  However, we did see portions of either a second syrinx or a continuation of this one in the thoracic area.  We will know more once we get her thoracic and lumbar MRIs done.  The syrinx she has is taking up 50% of her spinal column.  This means there is pressure being placed on her spine and the longer the pressure continues to be placed on the spine the more neurological damage is done.

But her syrinx isn't even the worst news - it gets better.  Victoria has a 20 mm herniation of her cerebellar tonsils.  This means her cerebellar tonsils have descended out of her skull and now reside in her spinal column.  We knew this last year.  What we found out this year was that her brain stem has also descended out of the skull into her spinal column and appears to be a bit stressed from the pressure and location.  This is why Dr. Keating was asking if we had noticed any changes in her breathing when she sleeps (i.e. any periods of apnea) and if she was having increased swallowing issues (major red flag is an inability to swallow fluids - while she has had an increase in swallowing issues, including swallowing fluids it isn't an extremely frequent occurrence and she can still swallow liquids).

The tears started for me with the syrinx and continued almost through the remainder of the appointment.  These weren't the racking sobs that came later these were just the tears that I couldn't stop no matter how hard I tried.  Thankfully, Steven was able to ask questions.  I once had a friend tell me that no matter how upset you are when you are in a situation like that and your child is involved, you remember every little thing.  It took about 2 hours, but I did recall the majority of the appointment in ridiculous detail.  Like I said the world literally stopped spinning for me and I'm sure for Steven as well.  We have more questions that we will be sending to him via email and we will be having follow ups sooner rather than later.

So, Dr. Keating wants to do surgery this summer.  We will be scheduling a date for surgery once I work through everything that I need to with my office.  Right now July is looking like the most promising month to schedule surgery.  Part of me is terrified to wait that long with the brain stem issues, so we are also looking at a possible June date.  As silly as it sounds, I want her to be able to participate in her Kindergarten graduation. 

Dr. Keating wants to go with the most conservative and least invasive approach first.  This means he won't be cutting the dura (which is the covering of the brain).  He will go in remove a portion of her skull and C-1 vertebrae to give her brain more room.  What he is hoping will happen is that her cerebellar tonsils and her brain stem will return to where they belong.  If they don't, he will then shave the dura to provide even more room.  One major complication is that she has Ehlers Danlos Syndrome and she is more prone to a Cerebral Spinal Fluid leak if the dura is cut or possibly even shaved.  The Ehlers Danlos Syndrome throws in quite a few unknowns.

The other hard pill to swallow is that there is no cure for Chiari Malformation and Syringomyelia.  Believe it or not brain surgery is a management tool for Chiari Malformation.  We are hoping that she only needs to be decompressed once, that her syrinx will shrink and never return and that she will become asymptomatic for the rest of her life.  As a friend said when I told her about Victoria's surgery - pray for a miracle.  I will pray for a miracle and for safe passage for Victoria through this chapter of her young life.

Right now we are working through what needs to be done prior to surgery.  Some of the routine doctors visits that we had scheduled will now become a bit more complicated.  We are working through schedules and planning how we are going to be handling things including how to tell Victoria.  No, we have not told her yet.  If anyone has any advice on how to do this please feel free to share.  I don't know where or how to begin.  Victoria was indignant when we told her that she needed an MRI because her brain was in the wrong place.  Her response was "Mommy, my brain is perfect!"  Yes, Victoria it is perfect now, it is up to us to get it back to it's perfect location.

I don't have the luxury of forgetting how things were before surgery.  Chiari has no cure.  Brain surgery is merely is treatment option to alleviate symptoms.  We know this - it is a fact of life that will be with us forever or at least until a cure is found for Chiari.  Looking back helps me to stay focused.  It helps me to see even on the bad days that Victoria has come a long way from just a year ago.  Looking back helps me to move forward.  Life has no guarantees but I life does provide victories and moments to celebrate. 

As I look back on where we were a year ago and where we are now, I am amazed and humbled.  I know that my daughter has an inner strength that will get her through her life.  I know that life is not going to be easy for any of our kids but together we will get through the hard parts and we will celebrate the victories and the moments of joy.  I know that Chiari and EDS will not define who our children are ... Alex, Nick and Victoria will define who they are and what they do with their lives ... Chiari and EDS will present issues and obstacles but they won't define our children they will simply make them better at being who they are.

Congratulations Victoria!  I know we will do the Walk for Babies again next year and have even more to celebrate.

Learning Curve - Part 1

We have known since before surgery for her Chiari that Victoria has been dealing with deficits in reading.  We know that there are several reasons why she has been having problems.  We have been making head way overcoming the deficits - but she is still struggling.

This isn't the first time that we have dealt with learning disabilities.  Alex has struggled with learning issues since First grade.  It is one of the reasons we decided to home school - so that we could address his issues. 

We have three children and we know that each one learns in a different manner.  We know that each one has strengths and weaknesses in the academic arena.  But knowing things doesn't always translate into simple and easy solutions. 

A few weeks ago, answers didn't arrive until after Victoria and I both had our respective melt downs.  It was if we both needed to have our one last temper tantrum so that we could clear the air and find our motivation to move forward.  It sounds silly, but when you deal with so many different issues each day, sometimes when there is a respite, you get a bit off of your game.  Rather I get complacent and after last year I so want a break and I know that it is not an option, but part of me becomes mired down in why can't things just be easy for once?  I am learning that chronic conditions don't allow for much that is easy. 

After shedding some tears, both Victoria and I got up and brushed ourselves off and started over.  What we learned (or remembered) is that Victoria learns differently from Nick and Alex.  She needs audio and visual stimulation.  She likes to sing and she likes having songs that help her remember things (i.e. Days of the Week sung to the tune of the Munsters theme song:  "There's Sunday and there's Monday. There's Tuesday and there's Wednesday.  There's Thursday and there's Friday and Saturday.  Days of the week (snap, snap) days of the week (snap, snap).")  Once I remembered her learning style things seemed to snap into place.

I wish things could be different for all three of the kids.  I wish some days I could be off of my game without it being such a big deal overall.  I wish for normalcy everyday - but in the end normalcy is what you make it.  And in the end wishing will not make it so, but tackling the problem, devising a solution and then implementing that solution will. 

We have found a few solutions and we are implementing them.  But the way I want to write them up is in review form so I decided not to put everything in one long, never ending post.  So stay tuned for part 2 and if you have any advice on how you handle issues with your children and the stress of chronic conditions drop me a comment below.

Saying Good-Bye

 

We have always had dogs. Well at least since we bought the house years and years and years ago. Our animal circus started with three cats. When my cat died, Steven bought me a beautiful yellow lab. We named her Kira. Kira is a very strong willed alpha female and needless to say she and I clashed. She bonded with Steven and became his dog. We got Kira in July and then Brandon and Bailey in the fall of the same year. Brandon and Bailey were Goldens.

We lost Brandon first to a heart arythmia. We rushed him to the vet when the symptoms started but short of being at the vets when his heart went crazy there would have been nothing that we could have done to save him.

Bailey left us a few years later when cancer attacked his heart.

Today we say goodbye to Kira. She was diagnosed with cancer a few years ago. The vet operated and told us then that it would most likely come back and that by that point she would be too old to operate on. In the past few months it hasn't just been the cancer that has plagued Kira. Her back legs have stopped working. Hip issues are very common in Labs and up until recently we have been very fortunate that her hips have been fairly stable. Kira can no longer walk on her own and she has more or less stopped eating. Even on pain medication she whimpers at the slightest movement that she needs to make.

From the day we brought her home Kira has been a major force in our lives. She has never been a calm animal. In order to take her for a walk without having her walk us we had to let her carry a tennis ball. However there were times that even the tennis ball didn't keep her from bouncing all over the place. She has always been stubborn and bent on doing everything her own way. She loves to ignore me but respond to Steven's voice. She doens't respond to much of anything anymore since her hearing is all but gone. Kira loves playing ball. She would chase the tennis ball with the kids until we made her stop, fearing she was hitting a dangerous point of exhaustion. Kira can't play ball anymore. She can't run in the yard with the kids. She can't eat and she really loves to eat. She can't move on her own.

Kira would be 15 years old in a few months. She has had a well lived, long life. She has been a dear friend to all of us. A loyal protecter and an integral part of this family.

It breaks all of our hearts today as we say good-bye. She is the last chapter in the Three Dog chapter of our lives. Tonight when we come home the house will be empty and quiet. There won't be another dog for the kids to hold onto as they cry. There won't be that last vestige of comfort that was there the last two times. It will be very hard for all of us. But holding onto Kira and watching her suffer is even worse.

Rest now dear friend. Rest and find peace without pain. We will always carry you in our hearts.

And First Prize Goes to

Both boys have been in Cub scout packs that hold cake bake contests.  Alex's former Pack was definitely hard core - everything had to be edible, the cake had to arrive by a specified time, etc.  Stressful but fun.  We won some and we lost some.  By the end though, Alex was able to design his cake and implement the design.  That was the goal I was going for.

Nick has been participating in his Cub scout pack's cake bake contest for three years now.  The first year he made a dragon.  Last year he made Burnside's Bridge.  And this year the theme was Native Americans.  Nick learned all about Indians in history class at the beginning of the year.  Of course he pulled out his history book and decided to make the three main types of dwellings. 

And the winner this year ... Nicholas.  Congratulations Nick!

On a side note - Nick is a stickler for detail and will not settle for cutting corners to save time.  Just letting you know if you ever  have to work on a project with my dear, sweet, accurate to a fault little boy.

Steven made the Indian heads for Nick's den.  This is where we used the awesome clay that I mentioned in my prior post. 

Overall a fantastic day!

Contemplating

(Picture from Charles Schultz at AllPosters.com)
 

Last year when we were told that Victoria needed brain surgery I promised myself that after she was in the clear so to speak I would become more involved in advocacy for both Chiari and EDS.  I decided that I could no longer sit quietly. 

When you are diagnosed with a "rare" chronic condition there are a number of issues that you need to get through.  If the condition is flaring and you or the person who has it is very symptomatic and sick at the time, then your energy is spent just getting through each day.  You have a learning curve that you have to overcome in order to understand the health issues and the problems you are facing.  You also need to have as much information at your fingertips to be able to advocate for yourself and/or your loved one.  In addition to all of that you are stressed and most likely incredibly emotional - your life has been turned upside down.  (For a great discussion on the grieving process that occurs with a chronic condition head on over to Slings And Arrows of Outrageous Fortune.)

In the early months I think I left every doctors appointment in tears, and I have a huge issue with crying.  I eventually learned coping mechanisms that could hold the tears at bay until I was alone hours or even days later.  I learned how to have my mini breakdowns in my head.  I remember sitting in doctors offices listening to each new diagnosis while telling myself over and over in my head "Don't cry.  Don't cry.  Don't cry."  Of course it was in this ridiculous sing song voice but it worked for the most part.  I didn't cry at least not right then and there.  At that point in the journey I was struggling just to get my head around everything that needed to be done for my family - forget the rest of the world - my family had to come first.

We eventually hit a point where we were being more proactive than reactive.  Huge sigh of relief.  Finally, a return to something that looks normal.  A time to rest and recharge.  Honestly, I toyed with the idea of doing more advocacy, but wasn't I entitled to a little down time?  Yes, yes I was.  And even in the relative even keel periods there were issues and problems that needed to be addressed. 

Finally, last year I thought we are at a good point.  I am not as strong as I would like to be but I am getting there and things are going smoothly.  I wasn't anticipating the news we got in April of last year.  So many issues that we had missed with Victoria because we had seen them before in Nick or Alex and they had resolved themselves or continued but did not prove to be the red flag we thought they would be.  Maybe I was experiencing my own denial at that point - I just don't know.  I cried in the neurosurgeons office that day.  The tears just started and they wouldn't stop.  All of my coping mechanisms failed me.  The sobs came later when the kids were outside playing and Steven and I were alone.  They came again when I called my dear friend in South Carolina.  I could hear the tears in her voice and I knew I didn't have to hold back.  She just listened and cared as my heart broke over the phone - then she helped pick up the pieces. 

For some reason, facing brain surgery and our world crumbling around us served as a catalyst for me.  I needed to do something to make more people aware of Chiari and EDS.  My daughter was facing brain surgery and neither side of our family understood either condition.  In all of this time I hadn't even been able to adequately convey these conditions to family members.  Some family members thought the surgery was unnecessary, others told us we were doing this for attention and still others just chose to ignore the situation. 

If I failed so miserably with family how was I going to succeed with others?  How was I going to be more active and help others facing these conditions?  Talk about a great deal of self doubt.  I took a look around and I saw friends offering to help.  Friends offering shoulders to cry on.  Friends asking if the kids could do certain things when they were visiting.  So, people had heard me and I had made sense to them. 

I realized I was already advocating for my kids with teachers, scout leaders, friends and doctors.  I know how to do things that I didn't know how to do 5 years ago.  Most of them I would have been happy never learning but learn I did.  My little girl was facing brain surgery and I knew in that moment I needed to do more.  I needed to show our kids that you can do things with EDS and Chiari.  You can define your life and not the disease.  They needed to know that there will be times when the disease takes over, but you will find your way. 

I started blogging again.  Once I did started blogging again I started receiving emails saying I just referred someone to your blog because I heard that their child had Chiari or they were looking for information on EDS.  But I wanted to do more.  I have friends who are far more affected by EDS and Chiari than I am, who are raising awareness and money for research.  I still need to be doing more.

I have been signing up for charity walks and runs, but I have never participated in a single Chiari walk or fundraiser.  So, I started writing this post to say that I am contemplating submitting my application to serve as a site organizer for a local Chiair walk this September.  I realize that it will be a great deal of work.  I realize that it will be quite an adventure as well.  And as I finish this post, I realize I am no longer contemplating submitting my application, I am going to fax it off today.  I will keep you posted on whether my application is accepted or not.