No Ordinary Girl

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This is a guest post by Duncan Miller, the author and founder of Army of Us. The original post can be found here.

I’ve started this post so many times, but I always come back to the same thing.

You can only be described as exceptional when you spend every second of every day proving everyone wrong.

That is what these wonder women have been doing for at least 21 years (in one case 58 years).

I can’t tell you what it has meant for them; I no longer dare to think I can understand what goes through the minds of people afflicted by Rett syndrome. My hope is that one day they will tell you themselves.

But why do I have this hope?

My journey can only be described as a journey of enlightenment.

50 years ago, in 1966, Andreas Rett first published the first description of Rett syndrome. It only was generally recognised in 1983, when a second article was published by Swedish researcher Dr. Bengt Hagberg.

It means that Sherry (58 years old) had already been living with an undiagnosed disorder for 8 years, Nola for 2 and Kristi was 1 the year Rett was officially identified.

These girls (and their parents) were given an incredibly bleak life expectancy, but this is a story of hope, one where we prove the world wrong. That is exactly what these women proceeded to do, to reset our understanding of Rett syndrome.

In 1999 MECP2, the causative gene responsible for Rett syndrome was discovered by Huda Zoghbi and her team. Which means all of these women have had Rett syndrome longer than we have known the cause of it.

Every single one of these women has lived through discovery that it could be reversed. This was proven by Sir Adrian Bird in 2007.

These facts are huge because it means that all of them were alive when we didn’t know what caused it or had an inkling of how to cure it. Yet they and their families (there is no amount of acknowledgement I can provide here, these families are amazing) persevered and fought through it all.

Our discoveries about Rett syndrome have increased massively; currently, there are more than 10 drugs in testing (some in final stages), which will help alleviate many of the symptoms in Rett syndrome.

In the last few years, we have made technological breakthroughs, which have enabled people with Rett syndrome around the world to start communicating unassisted. Devices like this are giving us a window into Rett, which was previously unaccessible.

That window is proving something else to us. Once again they are smashing the preconceptions around the ability and intelligence of people who suffer from the disorder.

These women are smarter than we ever guessed and more able than we have given them credit for.

At the heart of these discoveries are the women and families (who without the help of social media) managed to overcome the most incredible obstacles and be fitting examples of what happens when you don’t presume some form of competence. The people who founded the charities, the lifelines, the social groups, which have made our journeys easier.

Yes, what we know has changed, it has changed enormously. It has changed because of these people. Rett syndrome is a better diagnosis today than it was 50 years ago because of these people.

These women who have changed the world, by beating it, every second of every day. If that is not a story of hope, then I don’t know any.

Christopher Reeve said

“I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”

Whilst this quote is true for the families who spend countless hours at appointments, in hospitals, at therapy, fighting insurance companies and institutions, raising money to fix it and raising awareness to fight it, it’s not true for the people afflicted by it: my everyday heroes. Because it takes something exceptional to fight every second, of every day, for a lifetime. They give me hope.

However, nothing about Rett syndrome is ordinary and these are no ordinary girls.

————-

This Album and poster (Which can be found here) currently has 107 women (A couple of young ladies are on the verge of 21, so I’ve included them).

58 Sherry
52 Nola
51 Kristi
47 Ann
43 Tabitha
42 Jennie
41 Kathy-Jo
40 Kris
40 Ciara
39 Amanda
38 Shelly
37 Heather
36 Nicole
36 Laurissa
35 Tala
35 Shana
35 Renee
35 Lisa
34 Shelly
34 Samantha
34 Kelly
34 Brandy
33 Rachel
33 Megan
33 Jolene
33 Emma
33 Courtney
33 Brandy
33 Annie
32 Trudie
32 Teshina
32 Pauline
32 Kacie
32 Gemma
32 Deirdre
32 Charity
31 Kimberly
31 Chelsea
30 Allison
29 Charlotte
29 Ashley
29 Amanda
28 Stephanie
28 Siera
28 Laura
28 Keisha
28 Crystal
28 Amanda
27 Stephanie
27 Ashley
27 Akasha
26 Shelby
26 Sarah
26 Kirsty
26 Katie
26 Jessica
26 Jenna
26 Jasmine
26 Chelsie
26 Caryn
25 Silvia
25 Rebecca
25 Nikole
25 Khrista
25 Erica
25 Chelsea
24 Sabrina
24 Renée
24 Rebecca
24 Kelsey
24 Jessie
24 Hillaree
24 Emily
24 Breezy
24 Angela
24 Amy
23 Taylor
23 Sydney
23 Sarah
23 Raquelle
23 Rachel
23 Lyndsay
23 Katelin
23 Kassandra
23 Emily
23 Alyssa
22 Stephanie
22 Natasha
22 Daniela
22 Chelsey
22 Alianna
21 Vivienne
21 Stephanie
21 Megan
21 McKenna
21 Laurie
21 Kayla
21 Katelyn
21 Kate
21 Grace
21 Brooke
21 Amber
21 Alexandria
20 Laura
20 Samantha

An Uncommon Love Story

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Every now and then, you hear a song and the lyrics strike you in a way that you takes you to a place, a memory, a feeling that you are hearing in a song something that exactly matches an experience you’ve had. When you are in love, you hear this in many of the love songs and it fills you with the warmth of a loving hug.

I am in love but not the kind of love that these songs were written about. I am lucky to be in love in an uncommon way. I am the parent of a daughter with Rett Syndrome named Stephanie. When she was born, there was nothing obviously wrong with her. She hit all of her early milestones although just barely. She was such a happy, calm, and easy baby that I thought life just didn’t get any better. My heart filled with the love that every parent knows when their baby is born. But, at 8 months old, she missed her first developmental milestone and we were asked to take her to a pediatric developmental specialist. After just a few minutes with her, he announced to my husband and me that she was on a development path that strayed from the typical one. When I asked him when she would get back on that typical path, he said “Your child will never be normal.” My world came to a halt.

My husband’s reaction and mine were different. As he carried out to the car, he was weeping. My numb feeling from the stunning news was turning into anger because of the audacity of this so-called doctor for presuming that he knew more about Stephanie than I did. During the following months, that anger slowly turned into the resignation that he did know more than I did. There was no denying that something was terribly wrong.

Rett Syndrome is especially cruel. It allows the parents to believe that everything is right. It allows the child to develop the ability to roll over, crawl, maybe walk, pick things up with their fingers, feed themselves, maybe start babbling or talking. Then little by little, it takes most of that away leaving behind a person trapped in a body that won’t do what she wants it to do, replacing her hand use with a repetitive hand motion that is the hallmark symptom of Rett Syndrome.

I remember driving to work realizing that I no longer knew what the future was. When I looked out in time, I only saw a dense fog. Stephanie wasn’t going to go to Kindergarten to make new friends on the slide or swings at the school playground. She wasn’t going to be invited to slumber parties, giggling all night and having pillow fights. She wasn’t going to hold hands with a boy and go to the prom. She wasn’t going to graduate, go to college, fall in love, get married, or have children of her own. My grief had taken hold of my soul, causing me to suddenly start sobbing just at the sight of another child running to her mom and giving her a big hug. It was a devastating time of my life.

Eventually, as the years went by, the grief subsided. It’s not like I don’t still see how different my life is from my friends and neighbors. I do. I was able to find peace with the fact that my “normal” is not the same as their “normal.” I just needed time for the world to shift so that I could see that everything I was so upset about were things I wanted, but may not be the things that she would have wanted. I wanted her to graduate high school. I wanted her to go to college. I wanted her to give me grandchildren. Every day, Stephanie has a smile on her face more than anyone I know. I now feel like I see things more clearly and just need to help her do the things that make her happy. I’m where I’m meant to be and this is our love song.

 

I See The Light – from the Disney movie Tangled (https://www.youtube.com/watch?v=k_k3FRAwYC0)

All those days watching from the windows

All those years outside looking in

All that time never even knowing

Just how blind I’ve been

Now I’m here blinking in the starlight

Now I’m here suddenly I see

Standing here it’s all so clear

I’m where I’m meant to be

And at last I see the light

And it’s like the fog has lifted

And at last I see the light

And it’s like the sky is new

And it’s warm and real and bright

And the world has somehow shifted

All at once everything looks different

Now that I see you

All those days chasing down a daydream

All those years living in a blur

All that time never truly seeing

Things the way they were

Now she’s here shining in the starlight

Now she’s here suddenly I know

If she’s here it’s crystal clear

I’m where I’m meant to go

And at last I see the light

And it’s like the fog has lifted

And at least I see the light

And it’s like the sky is new

And it’s warm and real and bright

And the world has somehow shifted

All at once everything is different

Now that I see you

Now that I see you

 

The Strength of Our Bond

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A very common thing happens to parents after having a baby. A very strong bond builds between the parents and their baby. Without thinking about it, the parents know they will do anything, including sacrificing their own lives, if it means that their child will have a better life. For most parents, this bond continues throughout the life of their children. However, as their child grows up and becomes more and more independent, their life no longer relies on their parents causing the bond to change. It is not necessary for the parent to be there 24/7 for them and the bond starts to become one of love and friendship instead of love and survival.

For the parents of a Rett Syndrome child, the bond does not change. The same protective, nurturing, and self-sacrificing feelings remain for many of us. As our child grows up, she doesn’t become more independent. She doesn’t have a future where she can leave the family home to start an independent life of her own. A Rett Syndrome child continues to need 24/7 attention for her parents. For some parents, fear of the future is added to the bond. If we are lucky, our child grows up to become and adult…and we become older. She becomes bigger. We become physically weaker. This eventuality makes parents have thoughts that most won’t speak about. How can I live with the grief of losing my child too early? But who can I trust to love her like I do if I pass away first?

Mother-daughter bond

The bond between mother and daughter with Rett Syndrome is strong.

The strength of the bond with a Rett Syndrome child is impenetrable which is such a source of joy but also comes with the curse of fear.