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

Feeling Thankful...

It's hard to believe that in the past week, I have travelled to and from New York, attended a rap concert, celebrated my 21st anniversary, Thanksgiving, Hanukkah and have managed a couple days of work in there too. Time to breathe and reflect a bit.  Deep breath.

New York was amazing on so many levels - experiencing the city through Charlotte's eyes and seeing that she enjoyed all the hustle and bustle that went along with it.  Fun to see her cover her eyes and ears when it all got to be too much.  She loved watching the people and experiencing being out and about - even if it meant bundling up and staying out late.  Our appointment with Dr. Djukic was beyond any expectation we could have had.  She greeted us at the door and looked directly at Charlotte, introduced herself, told her she was going to make her a lot better and gave her hugs and kisses.  She then proceeded to spend the next four hours with us telling, explaining and answering as many questions as we could come up with about Rett Syndrome.   We met with a speech pathologist who is going to train our family in using a communication book - http://www.spectronicsinoz.com/product/pragmatic-organisation-dynamic-display-podd-communication-books-direct-access-templates  and also arrange for Charlotte to start working with eye gazing communication tablet as well - http://www.tobii.com/en/assistive-technology/global/products/hardware/tobii-i-series/ . We came away from our visit feeling confident that we have been doing many of the right things for Charlotte but also there are areas we can make some major adjustments.  We are starting by adding Trazadone to her nightly routine to get her to sleep through the night - Dr. Sasha said there was no reason that any of us should be up during the night any more - I'm all for that!  She's been taking the medication for the past four nights and we've all slept well for the past three nights.  Next she prescribed eye drops - one drop on a Q-tip and rub it under her tongue twice a day to reduce her drooling - seems to be helping.  This will be great when Charlotte is at school and her typical peers will be less put off by her drooling.  She explained a lot about brain development to us and how girls with Rett Syndrome have healthy brain cells but it's the branches that grow from these cells that don't develop fully or in some cases not at all.  It is these branches that touch each other that allow our brains to communicate and know how to act - both physically and emotionally.  There is a clinical trial going on now using a medication called Copaxone that is currently FDA approved for people with Multiple Scoloris.  The hope in this trial is that the medication will stimulate the growth of the branches from the brain cells and thus improving many aspects of the girls functioning.  She has two spots open in this trial and we all feel Charlotte will be a good candidate.  If all goes well, we will be starting the trial later this month - which means another trip to New York and then follow up visits at four, eight, twelve week marks and then at 6 month mark - certainly will be racking up those frequent flyer miles!  One of the most profound moments of our visit was the doctor telling us that they hope to have a cure for Rett Syndrome within  ten years.  She told us our job is to get Charlotte ready for the cure.  She wants her to be both physically and cognitively ready.  So we are officially in training!   For all the information and time that was given us, I am thankful!

Monday evening I got to spend some time with my 13-year-old son.  Just him and I out to dinner and then to see Drake at the Staples Center.  While I clearly know this was not the optimal setting to be in with my son, we both seemed to forget all that had been going on around us and just enjoyed being in the moment and having fun together.  I know these moments don't come along too often and I cherish them when they do.  For this time alone with him, I'm thankful.

Hanukkah started on Wednesday - didn't know that until Tuesday night when our children told us.  Had really thought it started on Thursday.  Needed to kick into holiday mode at hyper-speed - thank goodness there's eight nights so still had time to get more gifts.  Both Abby and Jonathan were out so who cares that I rushed around to get the house decorated and Ronnie rushed to get gifts for me to wrap.  Charlotte did.  We lit the candles with her and she grinned ear to ear to have us all to herself.  For that moment that she was grinning, I'm thankful.

Thursday was spent celebrating Thanksgiving with our family.  This was the first year in many years that I opted out of cooking.  We had a great evening and meal at my sister-in-law and brother-in-law's home.  Started off a little shaky when Charlotte entered the house screaming but after a couple bathroom breaks and few appetizers, a glass of wine for me, all was smooth sailing from there.  For our wonderful family, a great meal and not having to do any dishes, I'm thankful.

Thursday was also our 21st wedding anniversary.  The day was so busy with cooking desserts and watching Charlotte that we never really got to celebrate as we have in past years.  This year it was a quick "Happy Anniversary" over our morning a coffee and another quick "Happy Anniversary" as we kissed each other good night after being beyond exhausted from the day.  For not needing to celebrate big and knowing that we are always there for each other, I'm thankful.

Tonight is Sunday and the first night in what seems like an eternity that all five of us were together.  We ate together, we talked, argued a little and laughed.  We all lit candles and watched the kids open their gifts.  No one was disappointed tonight.  Finding the right gifts for our children has always been a challenge but this year finding age-appropriate gifts for Charlotte rather than previous years that we've opted for preschool toys has been the biggest challenge but has had the biggest pay off.  Night one, she opened bubble bath, lotion and candles  - big smile and squeals.  Night two, too late to open gifts after Thanksgiving - extra time for us to shop.  Night three, a disney light that changes your room colors as you turn the pages of a story on Disney Storybook app on her iPad.  She loves that - she's been reading/following the stories as they are being read to her.  Huge hit!  Night four, a lava lamp - more squeals and smiles.  This awakening that we are finally getting her and understanding her is so evident in the way Charlotte reacts to us.  Tonight, night five - a treadmill for her room.  I'm attaching a video for you to watch.  When the evening was over, we sat on her bed together and she leaned against me and squeezed my leg with a huge smile on her face and I know she was saying "thank you".  I'm so full.  Tonight my other children saw that Charlotte really is understanding and making all the connections - for all of this, I'm thankful.

The past week I've been reading all kinds of posts of what people are thankful for and have been pondering in my free time, what am I really thankful for right now.  Of course there are the usual things, my family, my friends, my health, yada, yada, yada but I knew there was something more. I know now that  I'm thankful for the hope that has been given us.  I'm not saying this in a cliche or trite way but in a way that is deep inside each one of us in our family.  Hope that we are all getting to know ourselves and each other in a whole new light.  Hope that our future has a very different picture than it did just a month ago.  Hope that ignites a fire in all of us to be more and to do more…

With that, I wish you all a very Happy Thanksgiving and Hanukkah!