Not a victim

Posted on November 5, 2015 by mommabear0208

As you know, a few nights ago there was a fundraiser for Rett Syndrome here in New York City.

For this years event I brought along Lily’s team of home therapists as they are the driving force that helps my kid maintain, and gain, basic skills. And they are so deserving of a fun night out.

A mighty team!

And we had a fun time! What made it even better was that my brother Matt came to the event (he was up in NYC for work this week). But… But… The word ‘victim’ was used to describe girls with Rett syndrome during a speech. And wow did it rub me the wrong way.

My child is not a victim. She is an amazing individual who overcomes – on a daily basis – obstacles that would be unimaginable to most. I see her as a hero. I see all our Rett sweeties as heroes.

I know that the presenters of this speech were not meaning to offend. I wish they would have spent more time focusing on all the amazing things our girls can do and all the wonderful things they teach us. How they inspire every single person they meet and how they light up the lives of their families and friends. That would have been the perfect thing to hear.

Anyway… Thank you to those who contributed to the event. Every dollar brings us one step closer to a cure. And we are so close!

I wonder where Lily gets her silliness from?

Waves

Posted on October 14, 2015 by mommabear0208

The enormity of this diagnosis hits me in waves. I can go weeks, months even, not worrying too too much about the future. But then BAM – a test result comes back, a new behavior emerges – and I’m thrown into a tailspin.

This latest wave has hit me like a tsunami. And it’s washed me up on a desert island where I feel completely isolated and alone.

And yet I can’t give up hope. I won’t give up hope.

My kid needs me, and not just in the typical way a child needs a parent. I am her voice, her hands, her advocate, her life support.

She and I have many adventures ahead of us so I’m working my way off this desert island. What’s helping me right now is plotting out our next adventure – which will take place on a tropical sun-drenched island in February. More soon on this.

The Rettologist

Posted on October 13, 2015 by mommabear0208

In the world of Rett Syndrome, there is a “professional” called a ‘Rettologist’.

She is an integral part of the medical team because she knows her patient like the back of her hand. She is her advocate, her physician and her therapist.

She is the 24-hour nurse on duty, the domestic helper and her cheerleader.

She can be a psychic with an invisible crystal ball.

She can read lab results and know when something is just… off.

She learned the medical world not by choice but by experience – pretty darn fast – and embraced it like a pro.

She is a lawyer because she represents her daughter’s best interest.

She is also her daughter’s friend, best friend actually, sometimes feeling like her only friend…

She has the faith of a preacher and the passion of a rockstar.

She has a subconcious clock that ticks in time for diaper change or feeding or medicine time.

She has to be sharp as a butcher knife, but trust her insticts too.

She feels what her patient feels, and every tear that falls from her patient is like a stab of a knife in her heart.

She’s not perfect.

She gets angry or irritated easily, especially with anything that affects her patient.

She draws her strength from every smile from her patient, from every word of encouragement from family and friends and from every ounce of support from her community.

She belongs in a society of closely-knit women, bonded like soul sisters.

The child of one is the child of all.

It was not their choice that they are called “strong”, but fate chose them to bear, nurture and care for the brave warriors.

It is from their sisterhood that they share knowledge, stories, tragedies and victories.

The way they love is extraordinary.

– Credit to Mimi Burke, Rett momma extrodinaire, for writing this piece.

Join me on November 2nd in NYC to celebrate our amazing Rett sweeties

Posted on October 8, 2015 by mommabear0208

In my spare time (!), I help raise awareness and funds for Rett Syndrome Research Trust (RSRT), an organization that is near and dear to my heart. Prior to last January, I had never heard of the organization, but since then, they’ve become a crucial part of my life, and my hope for my daughter’s future.

As you all know, Lily was diagnosed early last year with Rett Syndrome. It’s not a high-profile diagnosis, but it is a devastating one. Rett impacts 1 in 10,000 girls and women, and most are wheelchair-bound by the age of 2.

Lily is one of the lucky ones. This year alone, she has lost – and then regained – her ability to swallow and use her hands purposefully. She walks (or runs!), has some hand function, and doesn’t need a feeding tube. She’s also making HUGE progress in her communication skills, with the use of specialized eye gaze technology. I want to thank you for taking part in this journey with me. Your support through this blog – both near and far, is indescribable.

I also don’t know what I would do without her army of therapists and doctors (at last count there were over 25). They have become like family to me, as have my friends at RSRT.

Sleeping peacefully during an EEG yesterday at the hospital.

This organization has made remarkable progress in advancing research on Rett Syndrome. A few years ago, approaches attacking Rett at its genetic root were not possible. Today there is scientific evidence that gene therapy could offer an effective way to treat – or even reverse – the disorder. RSRT is spearheading an ambitious gene therapy project to make this possibility a reality.

But we need your help to continue this scientific momentum and to support more research projects. I hope you can join me this year at the RSRT’s 7^th annual Reverse Rett fundraiser to celebrate our girls and help work towards making their fugures even brighter.

Please click here for details. I hope to see you there! If you can’t make it, please consider making a donation – any amount, small or large, helps us get one step closer to a cure.

Thank you.

The Master

Posted on August 20, 2015 by mommabear0208

While at my yoga retreat this past weekend, I came across the above maxim. It immediately resonated with me. And it got me to thinking….

I recently read an article entitled ‘Pity the Parents of Special Needs Children.’ Almost EVERYTHING written in this article was spot on. But the title? The use of the word pity? Well, that most definitely did not resonate. Empathy, understanding and support – not pity – are what parents of special needs children want.

That article was part one of a series of articles on parenting a child with special needs. Supposedly the second article is to focus on the positive aspects of it. Well, that hasn’t been published yet. I’m impatient. So I’m going to write it. Right here. Right now. Here goes:

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Parenting a special needs child is both heartbreaking and magnificent. There is so much fear, so many doctors appointments, so much bureaucracy. But there is also so much beauty, joy and laughter. I try to focus on the magnificence of it.

This is not an exhaustive list of all of the magical things that come with this role, and I’m hopeful that my friends who are on a similar journey will help me add to the below:

You learn to focus on what’s REALLY important.
I’m completely out of the loop on the latest tv shows, music and fashion trends. I don’t really care. Things I once obsessed over (like Ferragamo shoes!) are secondary, or even tertiary in terms of what I think about on a daily basis. And it saves me money, and time.
You learn to be mindful, and fully present.
Well, most of the time. We’re all human after all. But when you have a child with disabilities, you are so very present – while you’re playing with them, when you’re advocating for them, when you’re at the hospital talking to the doctors, when you’re strapping them in to their equipment. I try to carry this over into my non-mommy time as well. When I’m at work, I focus on work. When I’m doing the dishes, I focus on doing the dishes. And if I start to worry, I bring myself back to the task at hand. I’ve not perfected mindfulness outside of my mommabear role, but I’m getting better at it every day. And I’m becoming a better person because of it.
You recognize that each and every day is full of miracles – small and large.
Or as Albert Einstein so eloquently stated, “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Every day that my daughter wakes up and gets out of bed and runs to the kitchen patiently waiting for her breakfast – that is a miracle. When she communicates with me through her Tobii – that is a miracle. When she puts her hand out to caress my face and give me kisses – that is a miracle.
You pay attention to your child and help them foster their interests.
Here, in New York City, I often hear about parents putting their kids in a foreign language class or ballet – all at the ripe old age of 2 – to help them get a competitive edge for their future. They’re so busy trying to position their kids for their version of success, that they forget about enjoying their child and learning what their kid is actually interested in. I, and L’s army of therapists celebrate, and encourage, all of the things she shows interest in. Whether it’s planting and growing blue flowers, playing dress-up, or reading her favorite books.
You are much less judgmental.
When I see a kid having a meltdown in the grocery store, I don’t immediately go to ‘that parent is raising a spoiled brat’. I have compassion. Deep compassion. And if it seems appropriate, and I’m able, I offer a helping hand. Because I’ve been there before, and I know what that feels like. Practicing compassion, moving away from a ‘me vs. them’ mentality’ makes us feel better as human beings and makes us feel more connected to others around us. And I think that’s pretty cool.