Thursday, December 31, 2015

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.


Andrea, Ronnie, Charlotte, Abby and Jonathan