Our New Family Addition

Murphy & Kids

We have a new addition to our family.  That’s right… he was born on October 5th, 2012, and is growing like a weed.  He’s currently 14 pounds and doing very well.  He has about the same color hair as Brendan and Claire.  He has brown eyes and a pretty strong frame.  We named him Murphy Brown Reilly…  and he is our dog.  🙂

Murphy

Sean and I were going back and forth for a while on whether or not we should get a dog for the kids.  We knew we always wanted one… it was just a matter of when and how.  After making a long pros and cons list, we decided now was the time, and the how, well… we will figure it out.  Murphy is a lot of work.  But we are beyond happy with this decision for the mere fact that he is not only teaching the kids how to take care of a pet, he’s giving them a chance to experience an unexplainable type of love that comes with having a pet.

Murphy & BrendanMurphy & Nolan

Murphy & ClaireMurphy & Boys

And after the kids go to bed, I’d be lying if I told you I didn’t really enjoy this time with him.  We have a routine.  When it’s time to relax, I’ll grab my book, give Murphy a treat, and once he’s done with it, he’ll come over and cuddle with me.  Or if he’s feeling playful, he’ll go to Sean who will gladly rough house with him.

Murphy & Col

Murphy is our family pet, first and foremost.  He also comes with an added bonus though.  He is a mini golden doodle.  ½ golden retriever, ½ poodle.  He is the type of dog who has the potential to be a human’s guide/companion/helper dog.  While we want him to remain the family pet, we would still like to teach him to do certain things with Claire that we know he’s capable of.  In fact, it’s been recommended that we add a few goals to Claire’s therapy plan, which will require Murphy’s assistance.

One day as Claire’s speech therapy session was ending, Glenna (Claire’s speech therapist) asked how Murphy was doing.  I shot a video of he and Claire the day before and shared that with her.  As she was watching the video, I saw her face light up with happiness.  Below is the video… along with what came across her mind as she was viewing this.  (Thank you Glenna, for sharing your thoughts!)

From Glenna Greenwald:

“As a therapist sometimes I wonder if the skills worked on in therapy sessions ever generalize into other areas of children’s lives. It is something we all hope for but don’t always get to see. When Colleen said she had a great little video clip for me to see, I knew there was no doubt it would be cute. What I didn’t expect to see was that Claire was communicating with her new puppy.

I am sure that there are those who watch this clip and only see a darling little girl and a cute puppy. If that is the case for you, watch again; but this time with new eyes. Here’s why:

First of all, note that Claire starts off by using her single message button that says “Hi, watcha ‘doin?” and then bends close to him… Murphy gives her a little kiss.  They were communicating. Now just in case you happen to think that this was just a random action, she does it again. First, Claire presses the button on her toy to hear a song.  Then she goes back to the “Hi, watcha ‘doin?” button and again presses that, before giving Murphy a tap on his head (which is her way of showing affection to others).  When Claire starts to move away, she turns around and looks for Murphy while gesturing something like “come on”. Claire comes back to interact with Mom for a moment. Once Mom acknowledges Claire’s efforts, Claire waves “bye-bye” and goes in the other room with Murphy in tow.

What could be better than seeing just how much “buy-in” Claire has to the idea of communication? Because of her family and early intervention using augmentative communication methods, Claire naturally extends her efforts to the new puppy. Because of her communication experiences, Claire also assumes that her efforts will be recognized and understood.  And my guess is that Murphy will learn to listen to Claire with understanding from the heart!”

Murphy & ClaireMurphy & Claire

We’ve only had Murphy for about a month.  It’s pretty incredible to see already, what he’s done for our family…  well, maybe with the exception of how he’s already shown the kids how to escape from his playpen. 😉     -Colleen

Murphy

Rollercoaster

cartoon

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

All Mixed Up

good-vs-evil

It’s a funny thing about reflection – you look back and realize, in spite of everything, there are common threads of goodness strung through your life and suddenly it’s easy to see just how good you really have it.  It helps you appreciate the “little” things in life.

Then the “devil” hovering over your other shoulder slaps you in the head like you’re crazy.

I’m pretty sure since Claire’s diagnosis I’ve developed some type of multiple personality disorder.  One minute I find myself marveling at life’s simple pleasures, then I twitch and next thing you know I’m incredibly sad, angry at the world – or both.  Before you know it, I’m back – even keeled, calm, cool and collected.  It’s a vicious cycle.  Those of you who’ve been telling me for years that I’m nuts, I’m starting to believe you!

Here’s an example:

I remember standing in Cleveland Browns Stadium during the National Anthem just before kickoff of the Browns season finale against the Washington Redskins just a few weeks back.  This guy’s rendition may have been 2 minutes long (wasn’t too bad actually), but it felt like 2 hours as my head was all over the place. 

As I looked around, it was a beautiful day – sunny, a little chilly, but no snow…totally unexpected for late December in CLE.  I was very happy, very appreciative, very thankful to be there next to my father.  Browns games are our thing – it’s what we do.  We’ve done it since I was 8 years old or so.  Been to every home game with him since (except for that ’86 AFC Championship game…Dad, should’ve taken me instead of Joe – result would’ve been different!) – even while I was working for the team, I made sure to stop by on game day and visit for a few if I could.  Like I said, it’s what we do.  On that day, at that moment, I couldn’t have been happier.

Scanning the crowd, the whole stadium scene, I looked to the field and noticed the grounds crew.  As they typically do, they were lined up along the back of the endzone.  Except today, someone was missing.  In his place were just his shoes with his hat placed on top of them.  Behind them, there were the initials “EE” in a circle on the field wall next to a sign that read “Eric’s Endzone, We’ll Miss You”.  See, a friend of mine from the Browns tragically took his own life the day before.  How terrible.  I hadn’t seen him since I left the team, but he was the nicest person on staff, no question.  Always quick to offer a smile and a handshake, even quicker to ask how you were.  I had no idea he was in that much pain, that he was suffering so much on the inside.  I absolutely felt terrible.  So sad – so sad for him and for those he left behind.

Continuing to gaze out over the field and seeing our country’s flag waiving in the wind, I started to think about how much I take for granted living in this country.  Freedom, for one – definitely thankful for those that fight every day to keep this the greatest country on the planet. 

My mind started to wander through all of the things freedom affords us – life, liberty, the pursuit of happiness, the right to bear arms.  Screeching halt.  (If you remember, this was the weekend after the horrific tragedy in Connecticut.)  What the parents of those children in Connecticut must be going through having their kids gunned down in cold blood for absolutely no reason.  Their lives taken from them before they even had a chance for it to start.  How about the kids who were there, but were spared?  The fear, the terror they must have experienced…their innocence ripped from them.  The fact that we even have to worry about this kind of thing happening is crazy, let alone worrying that it could happen in OUR kid’s school.  Terrible.  No kid should have to go through that, no parent should have to bury their kid at such an incredibly young age.

You know what, it doesn’t matter how kids die – they just shouldn’t.  A few weeks earlier, another girl lost her battle with Rett Syndrome.  I say “another”, because this disorder is a serial killer in its own right – taking too, too many lives (including two more in the past week).  This one was different though.  We shared the same last name as this family.  Their daughter shared the same name as our daughter and the girls were roughly the same age.  This mother was one of the first to reach out to us when word began to spread about throughout the Rett community about Claire’s diagnosis.  Rest in peace Emma Claire Reilly, may you now fly free.  God speed Reilly family.

As I looked off into the sky and temporarily fall into a trance…

You know what, <forget> Rett Syndrome.  Why Claire?  What did she do to deserve this?  Why was she given this life sentence?  Why is she the one forced to live silently, strapped in a chair with her hands wrapped up like a pretzel in front of her face?  Why is she the one going through therapy every day?  Why is she the one who can’t run around and play with her brothers?  Why her?!  <Shoot>, why us – why me?!  I’ve done some things I regret in my time, but nothing to deserve this.  What did I do to deserve to struggle to get through every single day?  Why am I the lucky one who gets to fight with insurance companies, government agencies and schools?  Why did Colleen have to trade her job and her career in for daily trips to Cleveland Clinic?  Why are we the ones who get to constantly cry ourselves to sleep?  This is all bull<honkey>!  Why do our boys even know what Rett Syndrome is – <heck>, why do we?  We were doing perfectly fine before all of this…why!?

Because this is the hand we were dealt.  Because it is what it is.  Because life is only what you make of it.  Because God doesn’t give you any more than you can handle.  Luck of the Irish.  Luck of the draw.  Murphy’s Law.  Whatever.

Claire is daddy’s little girl.  Rett Syndrome will not, cannot beat me.  I will not let it ruin my marriage, I will not let it tear my family apart, and with God as my witness, I will do everything in my power to make sure it does not take my little girl from me anymore than it already has.  I will make sure she has every opportunity, every resource, every specialist by her side so my  dreams, our dreams, her dreams come true and one day I will hear her voice, I will watch her run.  I will help her through this – she is not alone.  You know what, we are not alone.  The boys will be stronger because of this.  WE will be stronger because of this.  This is why.

“And the hoooooommmmmmmmeeeeee of the braaaaaaaavvvvvvvvvvveeeeeeee!” 

Snap out of it – back to reality.  Like the Browns, beaten and battered, we live to fight another day.

Besides the multiple personality issues I’m obviously coping with, and despite what the “devil” on my shoulder may say about it, life is good.  This was never more evident than over the holidays.  Each Christmas card we received reminded me of what great friends we have.  Spending time with family reinforced just how strong our support system is.  Being able to take some time away from work and spend time with each of the kids and with Colleen really solidified what life is all about.  Each day is a gift.  Every person that is in your life is there for a reason. 

My New Year’s resolution?  Try to live more “in the moment”, enjoy the present – don’t dwell on the past, don’t worry (too much) about the future.  Enjoy every minute of today because you never know what tomorrow holds.  Hug more.  Kiss more.  Celebrate the “little things”.

SMR