Negotiating with Terrorists

Posted on January 26, 2015 by mommabear0208

In my case, I’m dealing with an emotional terrorist.

Though I learned much through my university studies on terrorism, I am ill prepared when it comes to the emotional kind. (I must admit, I’d likely be ill prepared for the state sponsored kind too.)

The victim of this terrorism is my daughter. My sweet, innocent daughter. The aggressor doesn’t realize his folly.

I was so very hopeful that the custody and child support settlement would provide a bit of reprieve from the constant berating and badgering I was receiving. But not only has it continued, it has escalated in this past month.

I shouldn’t be surprised. I really shouldn’t. But I guess I’m just a sucker for optimism.

My little girl is such an empath. I don’t have the luxury of having a bad day, of being sick, or giving up. I guess that almost every good parent would agree with that, special needs or not. You have to show up for your kid and do your best every day. Even if your best that day is plopping them in front of a tv show so you can do the dishes, or have a cup of coffee, in peace.

So I suck it up (in front of my child). I manage. I try to keep the peace – for Lily’s sake. For my sake. But what this ends up looking like is giving in. Giving in to the constant requests. Because if I don’t, I know that I won’t be allowed to take her to visit Grandma in Florida, or go on a business trip to ensure my career continues to progress or… or… or…

There is always going to be something. The custody agreement clearly provides guidance on the holidays and birthdays, but for ‘special events’, it’s not so cut and dry.

I’m truly hopeful that one day this terrorism ends so that I don’t have to waste any unnecessary energy trying to keep my cool in front of my kid (or my employees!) in the midst of a show-down with this terrorist. I want to focus all of my energy on loving my girl, loving my family and friends, loving my job and loving myself.

I know this isn’t one of my typical posts. But I’m sharing this for a few reasons. I need to get this off my chest. I need to make sense of the insanity. And I need to start fresh in February. I need to start holding my ground and stopping the negotiations with this terrorist. And it may mean missing a family event from time to time, or maybe finding a nanny or friend who can watch Lily for a few days when I travel. I’m not sure. But it has to change.

And the first step to making a change is acknowledging that something isn’t working. This isn’t working. Not for me. And especially not for my girl.

Rett Syndrome: One year in…

Posted on January 23, 2015 by mommabear0208

I wasn’t sure what I was going to write today. Maybe about what I’ve learned in this past year, how I’ve grown, how Lily’s grown. I didn’t know. But thankfully, this morning I received a beautiful email from my cousin (who also happens to be the first person I shared Lily’s Rett diagnosis with, which was exactly one year ago today) so I will share what she wrote:

I think and pray for you and Lily just about every day and am thankful for your insightful and honest blog entries. I have been thinking of you this morning as I know it is the anniversary of Lily’s diagnosis and the day your life was turned upside down. Congratulations on making it through this insanely difficult year!! I can’t even believe what you have accomplished in just 12 months since that day…becoming an expert on this very complicated disease, mobilizing outstanding resources for Lily, moving in NYC, searching and enrolling in a new amazing preschool, custody battle victories, fundraising, advocacy for Rett and even a battle against rude and obnoxious honkers.. and the list goes on… Remember how stressed you were a year ago about all these things.. hallelulia! they are behind you.

When I received this email last week from Rettsyndrome.org, it gave me much hope and excitement that a cure is possible and close! I had heard about these results but for some reason it really hit me when I read this and heard about the energy and money going into further research on this drug.

I made a donation today to this research fund to honor Lily and her mother 🙂 and recognize the anniversary of her diagnosis as well as her 4th birthday! I donated $123.14 – a dollar amount that reflects the date of her diagnosis.

Although I am sure in many ways, this is a difficult day for you, I am writing to remind you to pause today and recognize your amazing accomplishments this year!! And thank the good Lord that this year is OVER!! Onto year 2… good things are to come!

My cousin is a private person so I won’t call her out publicly here. But wow, thank you beautiful cousin of mine – for being a source of inspiration, knowledge, unwavering support, and for writing the words I needed to hear today. I hope you don’t mind me sharing this…

Love,

C and L

Lily, Warrior Princess

Posted on January 15, 2015 by mommabear0208

This post has been percolating in my brain for some time. You see, I’ve been coming to some new realizations about Rett Syndrome lately and it has been difficult to put words to these thoughts. And then actually getting the courage to write them down has been even more of a challenge.

So here’s my attempt…

We’re almost exactly a year into this journey called Rett Syndrome. January 23, 2014. The day that we got Lily’s diagnosis from the geneticist. In this year, I’ve been researching, reaching out, fundraising and advocating for my sweetie pie; trying to get her the best care possible, the best therapists, the best school, the best doctors, the best caregivers. I will stop at nothing for my kid.

One of the first things I learned about Rett Syndrome is that there are four stages. Here they are listed below, courtesy of the Mayo Clinic:

Stage I. Early Onset Phase: Starts between 6 and 18 months of age, after what would be considered typical development. Babies in this stage may show less eye contact and start to lose interest in toys. They may also have delays in sitting or crawling.
Stage II. Rapid Destructive Phase: Starting between 1 and 4 years of age, children with Rett syndrome gradually lose the ability to speak and to use their hands purposefully. Repetitive, purposeless hand movements begin during this stage. Some children with Rett syndrome hold their breath or hyperventilate and may scream or cry for no apparent reason. It’s often difficult for them to move on their own.
Stage III. Plateau: The third stage is a plateau that usually begins between the ages of 2 and 10 years and can last for years. Although problems with movement continue, behavior may improve. Children in this stage often cry less and become less irritable. Increased eye contact and using the eyes and hands to communicate generally improve during this stage.
Stage IV. Late Motor Deterioation Stage: The last stage is marked by reduced mobility, muscle weakness and scoliosis. Understanding, communication and hand skills generally don’t decline further during this stage. In fact, repetitive hand movements may decrease. Although sudden death can occur, the average life span of people with Rett syndrome is more than 50 years. They usually need care and assistance throughout their lives

I’m going to call bullshit on stage 3, which is a supposed ‘plateau’. I’ve recently seen it called the ‘pseudo stationary stage’. This is much more accurate from my point of view. Lily’s doctor says she is likely in stage 3, the ‘plateau’. It sounds so much better than stage 2, the ‘rapid destructive phase’. I mean, can we get any more dramatic?

But what I’m learning – both from experience and from parents who are a few years ahead of me on this journey is that this ‘plateau’ is anything but. I’m not going to scare you (or myself) rehashing the details of what I’ve seen with my own eyes or what I’ve heard from these parents. But it’s not good. And it’s a constant battle. EVERY SINGLE DAY.

Lily is a warrior. EVERY SINGLE DAY. She fights and struggles and thankfully she wins most days. But there are those days, those scary days, when the Rett monster sticks its ugly head out a bit farther than usual. And it scares the bejesus out of me.

But I refuse to let it get the better of me. And I most definitely refuse to let it get the better of Lily. Us warriors, we are going to win this war, and we will fight the battle one day, and many giggles, at a time.

Om tat sat.

warrior princesses

A new year, a new start

Posted on January 3, 2015 by mommabear0208

Even though 2014 was the hardest, most challenging year of my life, it was also a beautiful year full of love and giggles. Life can be brutal. But also beautiful. Sometimes at the same time. I choose to focus on the beauty.

2015 will be a year of physical, spiritual, emotional, and financial recovery for me. And relentless research and fundraising for a cure for Rett Syndrome. And lots and lots of giggles.

And now… I want to share some articles I’ve been touched by (it seems that some fellow mommy bloggers have been reading my thoughts)… and some good news about a new legislation which will help me save for Lily’s future….

A Cliche

“It could be worse.” “Somebody else always has it worse than you.” I think it is so unfortunate that these two statements, essentially just different versions of the same sentiment, have become a cliche. Regardless of their cliche status, I say one or both of them to myself almost daily. Rett Syndrome is bad, I am not denying that, but it could be worse……

…I’ve heard people complain about how much their children talk. I have heard any number of similar gripes come out of other parents’ mouths, but I never say, “It could be worse.” That will invite a look of pity, shame, embarrassment, maybe annoyance. But what I wish is that more people in the world would just remember on their own how good they’ve got it. Read more here.

How I Navigate the Stormy Waters of My Daughter’s Diagnosis

I never really know the cause of the storms. Sometimes it’s just seeing the gap grow between her and her similarly aged friends. Sometimes it’s a phone call from a specialist, sometimes it’s making a phone call to a specialist. Sometimes it’s nothing. Read more here.

ABLE Act: For people with disabilities, a tax-free way to save

President Barack Obama on Friday signed into law a bill that will allow families with children with disabilities to save for college and other expenses in tax-deferred accounts. Read more here.

Thank you for supporting me and Lily in this beautiful life.

New Year’s brunch with my favorite person!

Knowledge is power

Posted on December 18, 2014 by mommabear0208

I remember struggling through the book ‘Orientalism’ by Edward Said when I was in grad school. I think it was one of the very few books I didn’t finish as it was too dense and, truthfully, boring. But what I did get from this tedious, yet paradigm-shifting and acclaimed read is the underlying thesis of his book – knowledge is power.

I agree. Knowledge IS power. But sometimes knowledge sucks.

For example, Rett Syndrome.

Here is some knowledge about Rett Syndrome:

Rett syndrome is a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.

Devastating.

AND…. And yet, there is still hope. Plenty of hope.

Lily’s therapists are amazing and are teaching the both of us how to maximize her potential (which, from an intellectual capacity is limitless) and mitigate her regressions (which is, unfortunately, ongoing – swallowing and hand function continue to be an issue).

From a physical perspective, Lily is growing normally. No slowed head or height growth (her current height puts her 6 months ahead of her actual age). I equate her ‘typical’ physical growth to knowledge. The knowledge to research like hell and talk to cutting-edge nutritionists to learn how to support this kids body which is constantly working against her. Lily takes supplements and vitamins galore – I look like a mixologist when putting together her morning and evening bottles. She eats clean and healthy foods. I stay on top of her constipation (which is a constant battle) to keep her comfortable. She gets PT and OT to ensure that she gets physically stronger every day.

So not all knowledge sucks.

But for Rett Syndrome in general? So much of it is unknown. How it manifests in each girl is different. And how it unfolds over the course of a girl/woman’s lifetime is a complete shot in the dark. There is NO body of knowledge to point to how this will fully impact MY child.

A fellow Rett momma blogger aptly put it this way:

Rett Syndrome is a relentless bully. …It is the type of bully who, just when you think you have fought hard enough to keep it at bay for awhile, sneaks around a corner and kicks you in the face.

I constantly need to be on my toes. On watch. On guard. Researching and reading and watching my kid like a hawk and meeting other parents who are years in to this experience (regardless of the pain their knowledge causes me). It’s a nonstop process.

Lately Lily has been having some pretty major zoning out episodes. They’re not seizures (as per the Rett specialist). They’re just Rett zone-outs, for lack of a better term. And it’s scary to watch. And there’s nothing I can do but hold her hand and talk to her soothingly until she snaps out of it.

Regardless of all the scariness, there is this hope.

I believe that my kid is going to rewrite the Rett books; that she is going to help pave the way for a new way to look at Rett Syndrome. That she will be cured of this horrific disorder and will be able to live a fully independent and symptom-free life.

And in the meantime, I’m just going to keep loving my kid. And reveling in her strength and beauty and joy.

This holiday season, please take a moment to put your life, and the lives of your children, in perspective. Give thanks for ALL the gifts you’ve been given – especially those gifts that you take for granted on a daily basis.

We ALL have so much to be thankful for.

Love,

C and L