She is my rock

Brooklyn Butler and Suzy Clark McNamara
Brooklyn Butler and Suzy Clark McNamara

This week we are talking about Grandmothers, and by that I mean Grandmothers of girls with Rett syndrome. I’m lucky enough to know so many fabulous Grandmothers now, most of them through facebook. I know I can’t speak for every relationship, but I can speak for the ones I know.

Here’s what I love about them, they are active, they are never scared or intimidated to ask questions, whatever they may be. Speaking from experience, they get involved, they open chats to me and send me pictures, give me ideas, it is truly wonderful. In may cases it’s the Grandmother who reaches out first, that’s because she’s looking. Looking for you, because you matter.

They are amazing, they are the rocks that support you when you get the diagnosis, they pick you up off the floor, they hold you as you cry. For many, they are the first person that is called whenever you need help. They are always there, a great big blanket of love and support.

At the same time, these wonderful women are dealing with their own grief, the grief of their child and the grief of their Grandchild, like every parent and Grandparent they long for the things that they can share with their grandchild, great Mothers become great Grandmothers, with dreams hopes and desires for their Grandchildren too. On that horrible day, she becomes the eye of the hurricane, the eye of calm, at the same time she is wrestling with all the same emotions. She is also struggling to understand what this means and what the future holds. There is only so much I can say about this, I’d rather let the words of people who the support most talk about it.

“I sat in the lounge with my mum and sisters and we all wept, but Mum wept the hardest because she grieved for two people. Her daughter and her grand daughter.”

Regardless of where you are.

“I remember seeing a consultant who told me something was seriously wrong with my child and that she may die young, my mum literally picked me up off the floor outside the hospital, even though crying herself, and held me till I stopped shaking.”

Over time as your strength grows, she is always there to hold you and stop you shaking. She is there through regression, she is there for all appointments. She is there to make sure you can go out to dinner and have a date night. She encourages you, she protects you. She tells you, you’re equipped, that you can do this.

At some point she becomes more than just a Mom to you, her empathy allows her to help others, her compassion that helps to build bridges, she cares, because it is in her nature.

“What makes my mom awesome? she talks to anybody and everybody, makes friends anywhere she goes. Her willingness to help and reach out without knowing who is she helping out.”

When you need those moments to crumble and cry, the moments where you can let down that wall of strength, your Mum is there to look after your child, and then she’s there to look after you, to help you find that inner strength again.

She is your respite.

“My parents have been invaluable – they periodically step in and hold the fort while we take a few moments to crumble.”

She is your right hand.

“I wouldn’t know where to start with my mom. She attends meetings with me, hospital appointments, researches equipment, medical problems, social care laws, she is my right hand.”

Through everything, most importantly, she is a Grandmother to your daughter, there to laugh, cry, share, to look after, nurture, protect in every way she can. To share that special bond with your child that only Grandmothers can.

She stands there hard and unbent in the face of the hurricane, she is wonderful, she is your rock.

“My mom is my strength when I do not have anymore to give, she is my smile on days I can’t find my own, but most importantly my amazing mother has become an even more amazing grandmother! She’s my daughters biggest cheerleader and biggest hug giver and one of the best friends we both have!”

She is your rock.


I realise that it is not only Grandmothers that do these things, there are substitute Grandmothers (Fairy Godmothers) who do all these invaluable things too, there are fabulous, Grandfathers, Sisters, Aunts and so many others. Whoever that person is in your life, send me a photo of them with your daughter and we can add them to the Album.

The new Album

Thank you to Bon, Donna, Kelly, Kerry, Heather, Yazmin and Faith, for letting me in.

She is my rock

She aint heavy…

heavy

I wanted to talk about heroes this week, the biggest of heroes, I wanted to talk about brothers and sisters. I’m lucky enough to have both, and I can’t even fathom of my life without them. No matter what happens, they’ve got my back, my best friends and my biggest supporters. When I’m hurting, they’re the people I can fall back, when I’m happy, they’re people I want to tell.

But it’s not my brothers & sister I want to talk about, it’s the brothers and sisters affected by Rett syndrome

I don’t like the word sibling, it just doesn’t feel right to describe the wonderful connection you have with the people you grow up with, the deep love, but I guess I’m going to have to use it.
I’ve had the wonderful opportunity to meet so many siblings, and they have been wonderful, they’ve always been so kind, caring and protective of their sisters. When I started collecting these moments for the Awareness Albums I’ve been making, I always knew there would be photo’s that capture those little moments of love between siblings, I didn’t quite realise how often that would be.

It’s quite obvious to me the comfort, consolation and friendship they bring, the joy, the happiness and all the other wonderful emotions you see so vividly captured in the girls faces. Growing up with Rett syndrome seems to give them an uncanny ability to communicate more intensely with their sister.

That’s not all though, these siblings seem to be so much more rounded as children, it took me a long time to grow out of being selfish and self focussed, I think it’s a natural thing as a child. I watch as Emily hardly big enough to hold the remote, will change the TV channel to Handy Manny for Carys, or call her Mom if she thinks something is wrong.

I watch as Lucy constantly checks on Sophie and makes sure everything is okay. Sitting on a couch holding hands while they watch TV.

I watch Shannon with Cassie, and Millie with Lucie. I watch all these wonderful children just be amazing individuals. I watch as they fall asleep hugging, holding and dreaming with each other.

I speak to parents, I hear their concerns as they worry about the impact that Rett syndrome has on their other children. The demands of Rett syndrome means that holidays are tough, going anywhere is tough, doing anything is tough. They are concerned that it always about Rett syndrome and sometimes not about the family.

There are so many dilemmas that face a special needs parent, not just the cause, but the fight to make sure you pay all your children the same attention, the right attention. That you always encourage and push each child to achieve what they are capable of, that they understand how much you love them, that they know they are still the centre of your universe.

The fact that when they go into the world, for school, for activities, they go with a greater experience and maturity of the life, and especially the fact that even though we may not all be the same, but that we are all beautiful. That’s what makes them beautiful, that’s what makes them special.
From my experience, you’re doing a pretty good job, I see children that are growing into great examples of humanity.

She aint heavy.

——
Here is the Awareness album for this post, please take a look at all the wonderful moments that people have sent us for siblings.

Just like the last Awareness Album here, please send me pictures of those moments you capture with your girls and their brothers and sisters.

She aint heavy…

Sleeping Beauty

And when I sleepI love sleeping, what I mean by that is I love a good sleep but it’s not always an easy thing to get, especially not if you’re a parent or carer of a child with Rett syndrome. 

As well as everything else Rett syndrome does, it also plays havoc with the sleep ritual, and even the best sleep regimes can easily be thrown out the window. I’ve spent many a day chatting to a parent across the planet who was still awake, sitting  exhausted, frustrated and full of coffee or Red Bull, watching over their child.

Good sleep is vital to the human body, it helps so many things, with muscle repair, it helps with growth and healing, sleep is a critical part of the body’s maintenance cycle. When you’re having difficulty sleeping, your health is compromised, you’re tired, crabby and really low on energy. It’s not only the child losing sleep, it’s the parent too. The grind of Rett syndrome is already exhausting, throw in the fitful sleeping patterns and it makes a hard job even harder.

There’s another reason why the lack of sleep is so incredibly frustrating for parents of children with Rett syndrome, it’s quite simply because when they are sleeping, they’re at their most restful, and in many ways untouched by the harsh realities and anxieties brought on by Rett syndrome. It’s almost as if in sleep they get to be free of Rett syndrome for a short while. Many mums have commented how much they love looking at their child when they sleep, for parents of a child with Rett syndrome, it’s an even bigger blessing.

This is not always the case, the reality is that apnea, seizures and various other problems can interrupt their sleep, but for the most part it is almost respite away from the hardship of Rett syndrome. When they’re asleep, it’s as if you have a chance to worry less for a short while, it’s as if you have a chance to breathe.

I’ve been making pictures for some time now, and it’s amazing to me how much of a sanctuary sleep seems to provide for the girls. When I see these beautiful photos of the girls at peace, sleeping and free, I wonder what they might be dreaming of, I wonder if in their dreams they get to fly too. I hope with all my heart that they do. I hope that the rest that parents get at this time, is matched by a freedom for the children that only their dreams can provide.

Dream free sleeping beauty, dream free.

Click here to see more of our sleeping Princesses.

Sleeping Beauty

Mother

stick

It was Mothers’ Day on Sunday, one day a year where we get to celebrate all things our Mums do for us, it seems a very small reward.

Mothers are nurturers, care takers, feeders and protectors, they would and do, do anything for their children. Mothers discipline, they instil moral values in their children, they heal and they educate, most importantly they defend, it’s what makes a mother’s relationship with her child special.

For Mothers’ Day I created a whole bunch of cards, some of them were silly, some were gush, some were just plain fun, but the one that stood out for me was “Thank you for carrying my stick.” Why it stood out is because of my memories, and I think every “child” will appreciate this about their moms. How often when you’re walking along a path, a street, in a park somewhere, do you come across a mother a mother and her child,  she’s carrying loads of random things that are required to look after a child, like the modern day nomad. With all the “necessary” items, she’s carrying some random object too.

In any normal scenario you probably think who’s that weird lady carrying the stick, but because she’s accompanied by a child, it just seems so obvious. She’s carrying the stick, a senseless object to any adult on the planet, because her child asked her to.

That to me expresses what it is to be a mom more than anything, everything else you do is expected (yeah I know we expect a lot), it’s the commitment you make when you have a child. What makes a Mother a Mum is all the extra stuff she does just out of pure love, like carrying a stick.

To all the mums out there, from all the kids,

Thank you for carrying our sticks, we love you too.

Mother