Grace for Rett » Grace's Life with Rett Syndrome

And now for something new (bed sores)

(Just when you think you’ve seen it all)

There’s always something new around the corner when you have a non-ambulant kid.

But first a little story to get us going:

Once upon a time (the day before we went to Florida for Christmas), we noticed Grace’s left leg wouldn’t straighten without her shaking and getting noticeably upset. For a few days she was quiet, withdrawn, very still. I started to remember these being signs of pain with other kids I know who are non-verbal. Having had the pleasure of enjoying American healthcare services sans health insurance, we decided to get her checked at the hospital here before we headed out.

Lo and behold, she has a little broken hip. A tendon had snapped away taking the bone it was attached to along with it. The only treatment was pain management so we took her home (after social services decided we weren’t deadbeats) and packed for 3 weeks in Florida.

So now for something entirely new…


Our very first morning we pulled back the covers to find a most disgusting somethingorother had developed on Grace’s heel. There’s no way for her to get a blister because fact is she doesn’t move. In fact, her shoes pass for brand spanking new when she’s done with them.

So after researching, asking questions online, forums, groups on Facebook…I decided what we were looking at is actually a bed sore also known as a pressure sore.

// why //

Pressure sores aren’t caused from rubbing. They’re way more sinister than that. When pressure is placed on an area for many continuous hours and the person can’t move to shift that weight, blood flow to the area can get restricted causing the tissue to die. So that gigantic pussy thing is just the tip of the iceberg. These things go deep. And they’re actually quite dangerous and prone to infection.

// how //

How to treat it was a tricky thing to figure out when we were 3k miles away from her medical team. So we kept it clean and dry and propped her feet up on pillows.

The other heel started looking red and we thought we’d caught it early but once we got home that one turned into a big thing like the first. And now that we’re home that one is being treated properly with dressings and the community nurses come to the house to change the dressings, measure the wound to see if its growing, etc etc. And she’s on some heavy duty antibiotics because it became very angry and hot.

The OT is coming this week to assess the way she sleeps so that we can alter her sleep system to keep her heels off the bed from now on.

I guess it just feels like once you’ve seen it all, know how to deal with everything that comes your way, something else pops up and it’s left me feeling that thing again…that deep knowing that every day we could wake up facing something scary.

So thankful for the NHS and Grace’s team who never fail to jump into action when she needs them.

Mary Duke - January 10, 2016 - 10:52 pm

Just another problem for girls with Retts. The list seems to just go on.

Rachael West - January 11, 2016 - 1:57 am

Thanks for sharing, something else to keep an eye on.

The Age of Reason

Tomorrow, Grace turns seven.

Seven seems like a really cool number to me. Seven days in the creation story. Seven deadly sins. Seventh Heaven. Seven seas. Seven continents. Seven colours in the rainbow. Seven days in the week. Seven dwarfs. Some people are actually named “Seven” (and I, for one, am hella jealous of people with quirky names).

Seven years ago I popped Grace out of my tummy. (Jack came out within seven hours, but Grace came out in two, making her my most convenient childbirth). And I guess while we’re on the subject, worth mentioning that Elijah took twelve lovely hours ripping me apart from the inside.

…but I digress…

Seven is a magical age. It’s known as the “age of reason”. In developmental psychology, this is explained as the age at which children are suddenly capable of carrying on complex conversations. They become more adept at identifying and expressing their emotions and so on and so forth.

Elijah entered this state as soon as he could talk. His first phrase at the age of two: “you’re not in my family!” (when Nanny wouldn’t give him candy) Also at age two the declaration “I’m FRUSTURAAAAAATED!” (connected with his emotions and able to express them). Age three, whispering to himself, “this is my life” when I forced him to hold my hand. Age four asking, “Mom, can we talk about car insurance?”

I didn’t know the meaning of this magical age until Jack turned seven and almost overnight, he became connected to the world around him. He started contemplating life, death, love. Asking questions. And answering questions with real, actual thoughts of his own. The unfurling of a new mind before my very eyes.

Tomorrow, Grace enters this age and my heart is apprehensive to be happy.

When I was a figure in the Rett charity world, I had to tow the party line that our girls are not cognitively impaired (aka “mentally retarded”). I don’t regret it. I believed it. But now I don’t know what I think. Well…I mean…I don’t know what to feel. I have ferociously fought in the corner of competence. That these girls and women are every bit as mentally advanced, adept and…well…brilliant as anyone else their ages. “If not moreso” I preached. And I have all the evidence I need to believe this. I have seen videos of girls and women using eye gaze computers. Hell, I’m friends on Facebook with Jo, a teenager with Rett who is every bit the teenager you’d expect. She’s got a great sense of humour. She’s the kind of bold I was at her age and I’d like to think we’d be friends in real life. So I have a big fat chasm…a dissonance between what I know, what I believe and what I will allow my heart to embrace.


At the end of the day, if Grace is 100% as mentally competent and advanced as every other child the day before they turn seven, then I don’t know if I can be happy about this birthday. Because what could be worse than coming alive to the complexities of this life and not being able to talk about them? Test them out. Ask questions. Answer questions.

I might be shit at a lot of things (like making school lunches or remembering birthdays or keeping up with friends) but one thing I’m not bad at is raising smart people. My boys are independent, brilliant, driven, entrepreneurial, bold, confident kids who are allowed to mess up, believe what they choose to believe, play with different ideals, test waters and make important choices. So I know that if Grace could talk…if she could express the complexities of her mind, she would be even more the shining star in this world than she already is.

Darren LeRoy Halford - November 24, 2015 - 5:05 pm

Thought provoking stuff.

Stephen Potter - November 24, 2015 - 8:42 pm

Good stuff!

Peter Bangs - November 25, 2015 - 4:40 pm

That’s potentially the saddest happy thing I’ve read in a very long time. I’ve only met Grace two or three short times but I know she’s a lovely girl blessed with two parents who will do everything they can to make sure she had all the best opportunities. If she could talk she would bear testament to everything you’ve invested in her life just as your boys are a testament.

How to Photograph a Girl with Rett Syndrome

It seems that people must be Googling about how to photograph girls with Rett Syndrome, so here’s my answer to a recent email inquiry on the topic.

So many families with disabled children avoid the photographer because it can be a really disheartening experience. I once had a newspaper photographer come to photograph Grace and he was frustrated because she wouldn’t lift her head on command or look into the camera. Even though he knew he was photographing her because she had Rett. I thought “is this what it’s like to take your disabled kids to a photographers? No wonder people don’t do it!”


When photographing disabled children, I go for two different types of photos. Ones where their disability is obvious and ones where the insides shine through and they don’t appear to be different from other kids. The ones where they actually look like they have Rett will be easy because that’s how they look the majority of the time. When Grace was first diagnosed, I used to delete the photos of the crossed eyes, teeth grinding, hands flying allover the place. But now, I think they’re cute because we’re used to the way she is. And I don’t know where the parents are in their journey so I take both types. The more normal looking ones aren’t as easy. You have to focus between the eyes and if she’s moving around a lot (rocking, tremors, etc) you’ll have to follow her face with your camera. Wait for those precise moments when she looks at you and snap those shots. It can take me up to 40 or 50 shots before I get “the one”. Be patient. It’s like hunting.


That said, some parents hate the photos of the girls with their eyes crossed so taking the time to talk to them and ask what her strengths are and the particular faces they don’t like (exe: “when you take pictures, what are the ones you always delete?”) would be good. Now, remember that as a photographer, it’s your job to create products for them to display in their home. The highest value shots will be those where she is looking straight into the camera.


It’s instinctive to call a kid’s name to get them to look at you, but girls with Rett (other than two girls I can think of) don’t do anything on command. Calling their name over and over will just frustrate you and make their parents feel like they should be doing something to make it happen. If parents are saying “smile, smile, smile” I just say “don’t worry. I’m just waiting. It’s ok” because the girls can’t do things on command. But sometimes parents try so hard to make their girls seem normal so they still try to demand that they smile. It’s very important to know that these girls aren’t mentally challenged. They’re “in there” and just locked into their bodies. Resist the urge to baby talk her. And I think the most frustrating part of asking a girl with Rett to smile or “look over here” is that she knows what you’re saying, but her body has a mind of its own and that will just make her sad.


Girls with Rett have very fast moving heads and hands so you’ll need a very fast shutter. Sometimes, their hands are still a blur and to be honest, that’s Grace (super fast hands that are always moving) and I find it endearing so I don’t always try to freeze her movements.

Below is a video of me working and photographing Rett kiddos (if you’re reading this in your inbox you won’t see the video so click here). You can briefly see a tactic which works really well and that’s to hold a phone or tablet above my camera with their favourite music or TV playing (you can also see me doing this in the photo below that). Just be patient. Don’t shout commands or over stimulate her. Sometimes I ask everyone to leave the room so it’s not sensory overload. Sometimes the parents are the problem and I have to pluck up all my courage to ask them to leave. And if you just sit there and chill, she will look eventually. 10% of the time, I get a gal who simply doesn’t ever look at me. For some of these girls and women, their bodies are such runaway trains that just trying to breathe is enough to keep their attention elsewhere. Don’t stress. If that’s who they are, then that’s fine, too. Just photograph her for who she is.

Some technical notes: unless you’re very experienced with wide open apertures, I wouldn’t shoot below f/4.0(ish) if you do what I said and focus between the eyes and follow until she looks, shooting wide open can be risky depending on the angle of her face when she does finally look. Avoid flash – this could induce seizures in some gals and is just generally not a nice sensory experience for them. A nice natural light is all you need. Position yourself with a window or sliding glass door directly behind you (you can see in the below photo how close I am to the window).


That’s all I can think of for now – good luck!


Amanda Nicholson - October 13, 2015 - 3:12 am

Very good read. :)

Sylvia Jeanne Rodoni Koutz - October 13, 2015 - 4:11 am

Very nicely done and informative. Beautiful girls.

Mike Twohigg - October 13, 2015 - 8:55 am

Your pictures of Cassie are the best ever

Virginia Fitzpatrick - October 13, 2015 - 11:19 pm

Julia LOVES music and I slip my phone down in her chair playing one of her favorite songs and WaLa
We’ve got a smile!!!!on command:)

Linda Marie - October 13, 2015 - 11:25 pm

She’s a special kind of photo Grapher yes she is

Kathy Gaskamp Loflin - October 14, 2015 - 1:49 am

Your photos are amazing! Thanks for sharing!

Grace Collections Photography - October 14, 2015 - 2:44 am

Its always an honor photographing anyone with a disability. I have had that honour many times over and earlier this year photographed a young girl with Rhetts. The key factors mentioned in the article are all true indicators of a professional able to accommodate the needs of their client rather than expecting their client to meet their requirements. It is a joy to capture families in all shapes/sizes creating long term memories.

Alicia Vergara - October 14, 2015 - 2:55 am

Pues así le hacemos es casa.. mil fotos y una sale realmente bella..

Mary Wilkinson - October 14, 2015 - 4:13 pm

Nicely done! My Rett daughter is nearly 35, I’m not a photographer but have always tried focusing between the eyes and following her, sometimes I get dizzy! lol She loves light so we found many years ago if we need her to turn her head and focus we’ll place a flashlight behind us in the direction in which we want her to look. Not a bright bright light just a soft light to cause her to focus.

Tina Chain - October 14, 2015 - 7:50 pm

Thank you for sharing!

Scott L. Vannatter - November 15, 2015 - 6:57 pm

Wonderful post. I have missed reading about Grace and her beautiful family.

Estefania Peña de Solari - February 26, 2016 - 5:30 pm

You sound like an AMAZING human Being!

Confessions of a grieving woman

Beware this post is nothing but guts and tears. If blood makes you queasy, run. And please don’t comment about me being ‘amazing’ or wonder mum or whatever. You’re all wonderful but this post is about that magical thing when one person can sit down next to another and simply say “me too”.

Another thing…I have no idea what most of this has to do with Rett syndrome. I some of the things I wrote here are part of who I am. Some developed out of the process of grieving for my child who died but didn’t die. It’s hard to know where one part begins and ends. It’s all just intertwined into making me who I am today. There you have it.

Screen Shot 2015-09-26 at 11.43.18It’s one of ‘those’ days. I’m feeling this weird happy/sad thing. Sunshine and clouds. Feeling majorly introspective and usually, I can avoid this but today is a Saturday.

So as a lifelong writer, there’s always the desire to edit, curate, whatever. I’m just going to bleeeeeeeech my guts out here and not edit a single thing. Ok? Ok.

I’m a workaholic. Scratch that. I’m a busyaholic. I’m unapologetic about this. If you don’t work enough, society punishes you. If you work too much, you punish yourself. Is it bad to be a workaholic? I dunno. I do know that working, and moreover, busyness, keeps my mind from wandering into the deep dark recesses inside itself. The places where I think about Grace dying someday. Or the things we’ll never have with her. Or my own shortcomings. So this is confession #1.

In spite of this, I CRAVE solitude and stillness. Quiet. Nothingness. The older I get, the more I enjoy my own company more than anyone else’s. Sometimes I want to get away from other people so much it hurts. I want to sit on the beach. I want to sit in my car. Lay in my bed. Whatever. What do I do when I’m alone? Whatever. I. Want. Sometimes it’s work (duh). Sometimes listen to music. Play on my phone and be a voyeur into all of your lives. Post things that make me look like I have it altogether (is social media healthy or toxic? I dunno.)

Screen Shot 2015-09-26 at 11.08.35I feel guilty for grieving for my daughter who died but is still very much alive. The Grace I gave birth to -the concept/idea of Grace- died. This is an unspoken truth of grieving after your child received a life altering/limiting diagnosis. We feel like our child died but the guilt of that is unbearable. So we’re grieving for something but we don’t know what it is. Or we DO know but we can’t say it out loud. The Grace I thought she was going to be…she isn’t. It’s been almost 6 years since she was diagnosed. But thanks to some sweet sweet lies whispered into my ear about a cure in “5 years” I (like many Rett parents) have a stunted grieving process. I threw myself into charity mode. Cure cure CURE! I thought I could control Rett syndrome. I can’t. I really only started coming to terms with this diagnosis like maybe 2 years ago when I walked away from the charity world and decided I’m just going to be a Rett mum. I’m not a saviour. I can’t fix this. I can’t tell anyone else how to do Rett syndrome. I’m just me.

Grief has aged me. This is me 7 years ago:


Screen Shot 2015-09-26 at 11.09.39

I now feel 20 years older than I am in this photo. Grief years are…like…double or something. I used to have a light in my eyes. Life was ideal. Now, I often feel slightly dead behind the eyes. Tears are always just below the surface. My smiles always feel fake. Grief has made me both numb and super sensitive. It’s like inside my soul is this sensory deprivation and sometimes I just bang my head on the nearest wall to FEEL SOMETHING. When Grace first became ill and we didn’t yet have her diagnosis, I was up all night every night crying, wringing my hands in my rocking chair. Holding onto her for dear life. We thought she was dying. I lost 20 lbs in a couple of months. Sometimes I wish I could get chubby just so I wouldn’t feel like I have this skeleton face carved by grief. But my stupid skinny genes won’t let me so I just pile makeup on instead. Goodness I didn’t anticipate this post getting so dark. Desperately fighting the urge to purge…to edit. But I’m not going to because I need to know that I’m no the only one who grief has eaten alive.

I’m pissed that Grace will never grow up and move out. Selfish, I know, but there you go. My plan was to have children young so I could get back to my dreams, my goals, my career. I wanted to grow them up well and watch them fly. My boys will do this. They will be amazing men and I can’t wait to see where their choices take them. But Grace? Nope. She will always be here. Needing changing, feeding, washing. I will be 60 years old taking care of another aging adult as if she were a newborn. I dream of her going into adult care some day. And I dream of taking care of her forever. Part of me wants to protect the vulnerability of her and never let another person take care of her and part of me wants to protect the vulnerability of ME and send her away. It feels uber monstrous to admit these feelings. But there you go. Another yucky thing carved into me by knives of grief.

Friends. *sigh* friends. “Friends”? We lost some people in the fire. In the midst of our darkest times, we had people crying to US about what we should be doing to further our friendships. “You don’t call me anymore. We used to go to the movies.” one person cried. Call you? CALL YOU?! I don’t even talk to myself anymore! Some people I found in the whirlwind of grief and we just held onto each other until the magnitude and gravity of the spinning flung us apart. But in the midst, a new kind of friend rose from the ashes. The sticky ones. The ones who come after the diagnosis. Who have never known anything but the ‘new and unimproved you’. And they love you anyway. There are people in my life who I am holding onto with a death grip. They keep me sane. Or we go insane together. Either way, I am not alone. You know who you are and I love you more than I ever thought possible to love people.

Where is God in all this? Where is faith? Well…he’s just…there I guess? Like a good friend who just sits with you and doesn’t try to fix anything. I don’t expect him to. I don’t blame him. Something I learned when I embraced mindfulness/meditation is that you just sit there and allow your thoughts and feelings to happen. You don’t fight them. You sit with them. You acknowledge them, their existence and you say “thank you for letting me know you’re there but I’m not going to talk to you right now. Just be.” Sometimes I feel like this with God. He’s there. And I’m there. And we sit together. Once in a while I kiss his face and let him know that we’re cool. Sometimes I let him touch me. Sometimes I run. Intimacy can be hard in my world. Poor guy.

Well, well…feeling well and truly euphoric now. Actually smiling (God, I love writing). “A burden shared is halved” (or something sappy like that).

“Friendship is born at that moment when one person says to another, “what? You too? I thought I was the only one.” C.S. Lewis

Hayley Evans - September 26, 2015 - 11:47 am

Beth, I’m with you. Got you. Obviously in different ways.

Wanda Neil Kolo - September 26, 2015 - 11:57 am

I Love You Elizabeth! Thanks for sharing your heart and your most inner being. You are beautiful!

Rachael West - September 26, 2015 - 12:23 pm

You are right, I didn’t think that anyone else actually got me. We often reminisce about our girl and our lives before Rett. I feel like a shadow of my former self and that there are parts of me missing.

Caroline Fitzpatrick - September 26, 2015 - 1:14 pm

can’t believe I’m reading your post right now as was just about to pen a very similar one. You have yet again allowed me to feel sane and insane altogether yesterday and tomorrow and now. Thankyou Elizabeth for sharing. So spot on it hurts

Jocelyn Harrold - September 26, 2015 - 2:41 pm

Awesomely said. Brilliantly written, a purge of words.

Adriana Ascencio - September 26, 2015 - 3:18 pm

Absolutely Beautiful……
I thought I was the only one

Rebecca Sellers - September 26, 2015 - 4:14 pm

Thank you Beth

Erika Andree Bond - September 26, 2015 - 5:53 pm

Elizabeth, as much as my heart hurts for you and what you are going through….. I know, because I go through it as well….. I’m also happy to see you open up about it. Right after Asher was diagnosed with 22Q, and Matt and I were in shell shock, we received some advice that I will never forget. It was to “press into the pain and allow yourself to feel it.” It is a raw place, an honest place and it can get messy. You find out who your real friends are. But most importantly, you open up the wound so that God can minister healing to it. That process can transform you into a new person….A person fully alive who feels the fullness of Joy as well as the pain of loss. A strong yet sensitive person able to sympathize with those who are hurting. A person who can now be the friend who helps pull others up through their own emotional troubles with Love, because you were Loved back to wholeness first.

I’m not perfect at this. I know what the numbness feels like. I use to describe it as feeling like a nut in a shell…. The pain was walled out so I could survive, but the joy was walled out as well. That isn’t fully living….. It is just breathing, waiting for time to pass. There is so much more available. I finally came to the place where I began to take that advice….. And with much help, prayer and inner healing ministry, I began to allow myself to fee the pain. It’s been years since….. I’m still not perfect, but I can feel again and that is worth the process. Matt and I still deal with the hard questions of what life will look like for Asher and us in the years to come. We still deal with anger at our current circumstances as well as the feelings of being cut off from society because our family has special needs….. But I know from experience that underneath the tempest of emotion there is a strong current of Joy from the Father which sustains me. It held me upright through the battle for Asher’s life 6 years ago and it carries me forward now and gives me Hope. You have it too my friend. I know where you are and I know what is available for you… For us…. And it is worth this momentary affliction. Sending all my love from Oregon. 😉

Judy Wells - September 29, 2015 - 10:09 pm

Me too. Except I have stupid fat genes :). And I’m 56 and getting tired of juggling. Managing. Hiring. Training care providers. Seizures, dystonia, medications, communication. Fighting the school. Trying to keep a marriage together. Never having time to take care of me. But desperately aware that if I am not fighting for her, no one will. And look at that innocent face! So ultimately, I have to press into the pain and say this IS my life, I’d better find some way to balance things. And lack of sleep makes everything magnified and overwhelming. That’s how it is today. Tomorrow will be better and I will find the strength to keep going. Thanks for your honesty.

Robin Geer Troxell - October 13, 2015 - 5:43 pm

wonderfully said

Annelise Brose - October 27, 2015 - 6:39 am

So beautifully written. Keep sharing your words as it helps the isolation of our worlds a bit more bearable to manage.

Kt Gariepy - April 7, 2016 - 2:59 am

I love you big and your bravery exudes through your writing. xo.

Grace’s Epilepsy: EEG Results




I’m such a rubbish blogger! It’s been 4 months since I posted about Grace’s video telemetry EEG test. Naturally it took a couple months for doctors to read the results and come to some conclusions.

We saw our Neurologist a few weeks ago who explained the results in plain English and here are the basics:

  • We wanted to confirm that the episodes Grace was having were actually seizures and not something else. They are definitely seizures. It’s easy to wonder if you’re an overreacting parent but when your neurologist says, “Bottom line is Grace just has really bad epilepsy” then you know your gut was right.
  • Grace has two kinds of seizures: Focal seizures (those are the ones that look like this) and some bulk standard absence seizures where she just kind of goes blank for a minute.
  • The focal seizures are focused just in one area (I think in the front of her brain if I remember right). They don’t spread to the whole brain.
  • At the height of the week long EEG in the hospital, Grace had 29 seizures in one day. This is only because we took her off her meds for the study.
  • These seizures aren’t dangerous. They are only potentially dangerous if a seizure goes on for long enough to spread and then not end without rescue medications. But we’re talking like 30 minutes or something.
  • Before now, we’ve been pretty aggressive about stopping seizures within the first 8 minutes by administering Midazolam. Midazolam sedates Grace and pretty much derails the whole rest of the day. It can also cause respiratory depression which means her breathing gets so bad that she ends up being picked up in an ambulance.
  • Now that we know more about these seizures, we’re able to let her go 12-15 minutes before administering meds. The few seizures she’s had since then have ended themselves within this time frame without the use of meds.

Ultimately, of course, the goal is for her to not have any seizures at all and her medication (Lamotrigine) is very good at this. She’s only had 2 or 3 in the last 4 months and that was only because she was recovering from us taking her off her meds for a week.

So yea…overall very good information. Although it was a bumpy ride I’m very happy we did the week long study and I’d recommend it to any parent feeling a bit in the dark about their child’s epilepsy.

Scott L. Vannatter - August 27, 2015 - 6:50 pm

Glad to see her sweet face again. Wondered what had happened, but understand when the health of a child is at stake. All else can drop off the map.
Take care and I will continue prayers.

Justin Minton - August 28, 2015 - 4:12 am

Hi grace my little girl Kirsty is 25 now medicine will control your fits once they get right dose I follow retts since my girl was born and she means the world to me and grace u r a beautifull girl I wish u well Kirsty and her dad x

Shaeema Abrahams Ramson - May 28, 2016 - 10:24 am

My daughter is 3 years old also gets the seizures the way grace does I’ve learned alot at just reading this thank you

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