She's So Beautiful

She’s So Beautiful

As another year is coming to an end and tomorrow we start a new one, I thought like so many others that now would be a good time to reflect on where we’ve been and where we’re going.  I know, this blog is so long overdue!  I haven’t looked back on my last post so not exactly sure where we left off but who cares – just ready to share some new thoughts.

Last week we returned home from our most recent check-up with Dr. Sasha at the Rett Center in Montefiore Hospital in New York.  Charlotte had a great visit and we are going to continue with the Copaxone as she has made great strides – her gait speed has increased over 75% from the time she started it and she now has a completely normal EEG with no abnormal brain activity.  Her hands have stiffened a bit though and in fear of them getting worse, we are starting a Parkinson’s medication, called Artane, hoping it will loosen her wrists some and make it easier for her.  Testing the medication now and hoping for minimal side effects.  Some other medications we are excited about that may come in the very near future but will hold back on sharing that news until a later time.

One of the most powerful moments for me on this trip was visiting with our cousins who hadn’t seen Charlotte in over a year and I was anxiously waiting to hear their observations and if they had noticed anything different.  Of course, everyone said she looked great – but seriously, what were they going to say…! However, my cousin, Debra, said to me, “Charlotte looks so beautiful.  I mean it, she is so pretty.”  I was taken back at first, as of course, my initial thought was “Did you think she was ugly before?”  But then I got it.  Charlotte has become beautiful as she has a new sense of who she is and while she can’t outwardly tell you with her words – her body exudes her sense of being!  She is accepting of her self and is so aware of how accepting others are of her as well.  She is a player in the world now and she knows it.  Her head is held high and she makes eye contact with everyone.  Her curiosity of the world around her is endless and she wants to be in everyone’s business.

Two years ago when we first went to New York, Charlotte, spent at least half of her time in a wheelchair only wanting to watch her iPad, not wanting to walk or engage much.  Two weeks ago, she refused to sit in her chair and actually screamed at me in the airport when I made her sit in it to move things along.  She walked the first day in the pouring rain well over a mile, up and down curbs and through multiple puddles to see the Christmas tree in Rockefeller Center.  The following day she walked three and a half miles before dinner with such determination as if she had something to prove – I kept telling her to slow down that it wasn’t a race.  But I truly believe she felt she had something to prove – not to us but to herself.  Such fortitude.  Such perseverance.

Her life is not easy by any means and not every day is a good one.  She’s had a lot of changes over the past year – she started a new school last year – our local middle school, we moved homes which entailed living in a hotel for almost two months, we lost close family members and gained a new one.    Her ability to adapt and adjust to change is tremendous.  She is a like a rock –she is solid and ready to take on any new challenge –usually with a smile but occasionally we get a few grumbles but after all she is a teenager!  She received the Principal’s Award last Spring for academic excellence.  She is telling us her thoughts and needs with her Tobii.  She has started writing sentences and enjoying books – both reading and being read to her.  She drove a golf cart!  She’s telling us who she is.  She’s telling us that she’s here and while she cannot use her verbal voice, she has figured out how to be an active part of all of our lives.

So yes, I get it.  Charlotte is so beautiful.

From our family to all of yours, we want to wish you all a very Happy and Healthy New Year.  Thank you all for all the love, support and encouragement you give us through this amazing journey.  There is never a day that goes by that I don’t feel proud to be a mother.  Thank you Charlotte for always giving me perspective and modeling what the meaning of life is all about!  May the coming year be filled with many more exciting adventures and milestones.

Xoxo,

Andrea, Ronnie, Charlotte, Abby and Jonathan

Not So Good with Complacency

Complacency according to Merriam-Webster's dictionary is "a feeling of being satisfied with how things are and not wanting to try and make them better." I'm becoming aware very quickly that Andrea and complacency are like oil and water.  I assume I never have been good with it, which quickly explains my never-ending desire to be a high achiever.  However, this journey with Charlotte has really forced this to the forefront.  

Charlotte's official trial with Copaxone was over last August.  It has been a great success.  Her gait improved by 75% and pulmonary study improved by 50%.  Of course the eye gaze testing system broke down at the very moment of her test and we'll never truly have that result.  The success has allowed to her to continue taking the medication.  She has made unremarkable strides.  She hardly ever sits in her wheelchair - we often just end up taking it and leaving it in the car or push it around to carry our stuff.  She is so engaging and really wants to be part of everything we are doing.  She is active both physically and cognitively.  She adapts quickly now and is open to trying new things (better than her brother, I must say).  Tonight I read through all my past blogs and can't believe what a difference this past year has made.  We went from no diagnosis, to completing a trial with several cross country trips, specialists coming to California to teach about Rett, changing to a typical school where everyone believes in her and wants to help her grow.

Things are going great.  

Charlotte is happy. 

She has friends. She's healthy.  She sleeps through the night.  She no longer takes seizure medication. She's engaging. She seldom gets upset.  She likes to be part of all that we do and also go out on her own with her sitters.  She makes lots of choices now - just a couple of days ago, she picked out her own outfit for school and was so happy she couldn't stop kissing herself in the mirror.  She even picked out her own earrings for her birthday.  She got straight As on her report card (minus the B in PE - she gets a pass on that - really, what kind of teacher gives a disabled child a B in PE - a bit messed up if you ask me.).

I'm happy.  

Really, don't get me wrong. I marvel at Charlotte every day and how far she has come. I cherish every moment with her- even when she pokes me in the face while I'm getting her dressed. I love that she teases me and realizes that we can actually have a two-way communication.  I love when she leans against me while we sit side-by-side.  I love how she looks at me every morning as I tell her what lies ahead for the day - she really does like me giving her a rundown of the days activities. 

I love that I have balance in my life.  

I love that I have two other amazing children that challenge me in so many other ways.  I love watching them engage and include Charlotte in our daily lives.  I love that they remind me that they can make fun of her like she was a typical sibling and that she likes it.  I love that they are protective of her.  I love knowing that they will always be there for her.  I love my work.  I love that for at least five days a week, sometimes more, I get to help people create families. My work day is filled with hope, aspirations and altruism - all about people helping people - with a few nuts along the way to keep things interesting.  I love that I get to share my work with my father who is my typist.  This bonus allows me to communicate with him all day long about so many things and love the relationship that we have.  But the key to my balance is my relationship with my husband.  Not only is he the father of my children, he is my husband and that relationship is what keeps this all together. We really do have an amazing partnership.  We have so much fun together.  Yes we do have moments when we get on each other's nerves and yes, we argue at times but those moments a far and few between.  We both know we are on a journey together and both share the same wonders and fears.  We trust each other on the deepest level.  We respect each other's needs to be individuals within our unit. We laugh a lot.

Complacency: "a feeling of being satisfied with how things are and not wanting to try and make them better."  I wish I could feel this.  Yes I can be in the moment and clearly you can read about that I appreciate what I have and what we have accomplished.  But now I'm in a moment where there are no more doctors appointments, no new school transitions, no new medications, no searches for a diagnosis. I want more.  I continue to educate myself.  My brain is always going.  There has to be more we can be doing.  How long is it going to take to find a cure?  Why can't I figure out a cure?  Why can't I make my daughter better?  It's so damn frustrating.

  

I think we have the medical aspect in check for now.  So now, I'm thinking to move onto emotions and communication.  I've started to try and connect with other parents who have children with Rett Syndrome, maybe that's a new aspect to explore.  Do I want to hear what others do? How they cope?  Sometimes I do.  Sometimes I don't.  Sometimes I find information I've never heard about. Sometimes I read about amazing courage.  Sometimes I read about a young girl that has died from Rett.  I stop then.  Sometimes but selfishly, I just like riding this frontier alone and for the past year at trailblazing speed.  I don't want to know about potential road blocks.  I want to move forward.  It's really hard to sit with a diagnosis that has no cure.  That's the emotion part I'm working on.  Quite frankly, I think Charlotte is too.  I often try and show her videos of girls with Rett and what they are doing - thinking that she might like to see that there are girls struggling with the same things as her - she wants nothing to do with it.  She turns her head and pushes the iPad away as if to say, don't put this in my face, I know what I have and what I'm dealing with. Okay. So maybe she can communicate her feelings better than me. 

So communication it is. This is our new focus and maybe something I can learn so I don't feels so complacent and/or stagnant.  We have a Tobii at home now and still need someone to really train us how to effectively use it.  We supposedly have a Tobii for Charlotte to use at school though the computer is locked and the district office is trying to unlock it -whatever - we'll get that resolved soon one way or another.  I love that her teacher is excited to teach her with it and wanting to learn as much as she can.  I'm headed to Orlando in a couple of weeks to attend a seminar called, "Introduction to Guided Reading" by Susan Norwell.  Susan has her MA in Special Education.  She has spent the last 26 years in private practice working with children on the Autism spectrum and girls who have Rett Syndrome.  Her current focus is teaching literacy skills for children without verbal language and with significant disabilities while integrating augmentative communication and technology supports.   She has agreed to meet with me and teach me some skills to use with Charlotte. I hope to pass these onto her teacher as well.

I started off this blog feeling sad that I wasn't content with where we are.  I am though and appreciate it all. So as I have been writing, I've come to realize that it really is possible to live in the moment without being complacent. Onward and upward.

New post after the conference.

xo,

Andrea