Happy New Year!!  I hope everyone had a wonderful holiday season and close to the year 2012.

I am one to make resolutions.  I just like setting goals and having something to work for… maybe not every day, but just to keep myself in check in the areas where a little extra work is needed.

My personal resolution is to get my health back on track… I know, I know…pretty cliché.  But my health has taken a back seat, and I’m hoping to make this a priority again. Right.  Soo… on to the next one.  I would like to simply, blog more.  To do a better job with updating you on Claire, updating you on us.  When we first set out on this “journey”, we created this site to take you along for the ride – “rain or shine.”  I haven’t really done the most consistent job at that.  The last time I wrote was a few months ago.   And for right or wrong, there are two main reasons I haven’t blogged.

One: lack of time.  As a mother of three young children (and a new puppy, Murphy), yes, the days come and go by very quickly.  You know how it goes.  Moving along…

I thought time was the only reason, until recently, I realized it was much more than that.

Two: I really struggle with what to write.  It’s easy to write about the milestones that were made because sharing happy thoughts is exciting and well… also easy to read.  But what about the subjects that are not really exciting or happy?  I don’t want to be a “Debbie Downer” and have you turn away.  But then again, I want to remain real because with Rett, it’s not always exciting, happy and fun.  With Rett, I’ve felt emotions and feelings I never knew existed… the amazing ones, the good ones, the bad ones, and well, the especially ugly ones.  It’s a constant rollercoaster ride.  So do I share the whole story?

Here are a couple of examples:

A few months ago, it was a beautiful, sunny and rather warm Friday in late October.  Claire and I were having the best morning.  I was excited because we were heading out to go tour Claire’s future preschool. I pulled into the parking lot and it just hit me out of the blue.  Sadness.  I realized Claire wouldn’t be going to school with her brothers.  Some of the best memories I have from growing up were sharing experiences with my brother and sister, and their friends.  Our friends.  We were all within 3 years of each other (God help my parents) and we had a blast growing up…  we were very close, and still are.  We always looked out for each other.  As I looked at all of the little buses that were lined up waiting to pick up the kids, I took a deep breath, forced a smile on my face, and told Claire that it was time to go inside… how exciting!  We walk inside and I saw all of the special chairs and walkers, and equipment that I’m not used to seeing within school hallways. Will this chair be okay and safe enough for Claire?  Concrete floors…  will these be okay for her?  Will Claire’s teachers understand her needs, and also, get to know how best to encourage Claire, know her limits, and take the time to learn all of what Claire already knows?  My mind starts racing, and I’m again, feeling worried and just – sad.  We sat on the couch for a few minutes, waiting to meet the school director.  I look over, and saw a classroom door open. Little children with the most adorable faces were all lined up, getting ready to walk to the indoor gym.   I am studying each child.  I look at Claire, and her eyes are glued on them.  Then, all of a sudden, I see one little face that Claire and I are very familiar with:  Madison.  You see, Madison and Claire both go to the same physical therapy place.  They share the same room, and have through the past few months, become friends.  She looked over at us.  Her face lit up, and she says “Hi!” (to me), and then in a louder, more enthusiastic voice, says,   “Hiiii Claire!!”   Just like she does in therapy.  I look at Claire and she’s smiling, big time.  At that moment, I felt comforted… and some of the sadness and worry I had been feeling, slowly went away.  Part of me even felt a bit foolish for being sad in the first place.  It’s all about perspective.  Things could be a whole heck of a lot worse and I have a million reasons why.  In this case though, my child has a school to go to.  It has great equipment.  It has busing.  And most importantly, there’s already a friendly face that will help Claire with her transition to attending.  It may not be her brothers, but it will be okay.

The fall and winter were rough for the other Rett families, and my heart is heavy when thinking of them. “We lost another angel.”  I hate hearing, seeing or saying these words.  It happens way too often, as I’m learning this occurs every few weeks it seems. This fall, we lost Anna, who was 4 years old, and Emma who was 5.  There were several others, and actually one tonight, Breanna who was 16 years old.  Hearing this news, especially after the brightest of moments, is very difficult. Sudden death… this is the reality.  Complications of pneumonia.  Every time she gets sick, will it turn into something more?  When she’s sleeping, or maybe when she’s making a weird noise….is that a seizure?  Is it more?  Is she okay?  We don’t know what’s in store for Claire. We don’t know what’s in store for any of us.   The reality though, is that Rett creates a bit more fear and worry than I would have asked to bargain for.  My mind is always up and down, filled with enjoying the most simplest pleasures and blessings of life, and then sometimes hearing this news, at least for me, causes me to shut down and withdrawal until I can find the strength to think positively again.

I have grown to accept though, that it’s still also okay to experience sadness, anger, and other similar types of emotions, sometimes out of the blue, among the positive ones.  You can’t control emotions.  You can only control what you do with them.  When I need to withdrawal, even if just for a short period of time, I do it.  I say a prayer for God’s grace and a little extra strength, and I do my best to get back on track.  I also say a prayer of thanksgiving, especially for my husband, who is on this ride with me.  He gets it.  He experiences it too.  He gets me.  And on those days where I’m a little “off”, he is extra patient and offers a few more hugs.

We are hoping the more we share with you our experiences with Rett Syndrome, the more you can learn and begin to understand what Claire is going through.  Hopefully word spreads to your friends and families, and then on to theirs.  Taking our story “viral” only helps to create awareness.  Our biggest hope is that this then translates into more involvement with Claire’s Crusade, an organization we established so that through time, we can help make a difference on a much larger scale not only for Claire, but for every girl like her.

I am thinking in order to share with you our experiences (assuming you are also ready to ride that rollercoaster), I need to keep the blogs shorter (for one), but also, simpler. To do this, and to meet my New Years resolution of writing more, I’ll leave you with this:  We made a promise to you – to bring you along rain or shine.  So, here we go!   Some blogs will just be updates on her therapies.  Some blogs will be from others’ perspectives.  Some blogs will just be happy, and other blogs will probably, for better or worse, be the opposite.  It is what it is, and that’s okay.

Happy 2013!!

– Colleen

2 thoughts on “Rollercoaster

  1. There’s nothing I can write that you don’t already know. But, after reading this I realize God gave you Claire because SHE needed a Mom like you. She adores you. This is what I see, and I am blessed that I get to experience her view of you in the everyday. Love you!

  2. Col, what an amazing blog… As I was reading it I was picturing Claire’s big blue eyes as she was smiling at her little friend in the classroom. You guys never cease to amaze me with your faith, strength and ability to “keep on going”!!! You Are such an inspiration to our whole family:) Love you!!

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