Grace for Rett » Grace's Life with Rett Syndrome

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. 😉

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

Video Telemetry (is not about reading minds)

This week Grace gets the prolonged EEG I’ve been requesting for a couple years. This is how is goes down: she hangs out in a hospital bed for a whole week (fun) with a camera fixed on her and wires on her head. So it not only records her brain activity, but also video of the episodes to give a more full picture of what these episodes really are.

It’s called video telemetry (not telepathy…no mind reading involved).

It’s not uncommon in Rett syndrome for there to be a misdiagnosis of seizures which are actually something else. With the risks of being on anticonvulsant meds for a lifetime (like kidney stones…ouch) we don’t want her on these meds needlessly on the off chance it’s not seizures. And if they are (I’m pretty sure they are), then I want to know exactly what kind they are and what’s happening in her brain when this happens. I believe that knowledge is power and I want us to have as full a picture of Grace as we can.

We’ve got our own room, movies, a cooler full of food and 4g connection. #sorted

Julie Ann Holley - April 21, 2015 - 11:56 am

So pleased they have listened to parents. In most cases we know what needs our children have and when something is wrong!. Praying that the correct diagnosis us given and you are all back in your “new” home! Luv

Robin Geer Troxell - April 21, 2015 - 3:54 pm

hope you get some answers!

[…] Video Telemetry (is not about reading minds) […]

Rett syndrome regression // the screaming and crying

“If you’re going through Hell, keep going.” -Winston Churchill

One of the most heartbreaking issues to come up in the parent support groups for Rett syndrome is this issue of the screaming and crying during the period of regression. The helplessness in the voices of these parents – I remember it so well. And I’m here to tell you two things:

You’re not alone.

It WILL end.

Here you’ll find an abstract from a paper about the regression phase of Rett syndrome. A quote about the crying: “Social withdrawal and inconsolable crying often developed simultaneously with social withdrawal for shorter duration than inconsolable crying”.

In this from the Mayo Clinic, I quote, “Periods of crying or screaming may begin suddenly and last for hours”.

So there you have it. You’re not alone and your daughter isn’t unusual.

Let me tell you, when Grace was in this period, it broke us. Grace’s screaming happened at night for hours and hours. She could scream and cry for 4-6 hours. And this lasted for months. At times, Steven and I screamed and cried with her. I have never felt such feelings of helplessness, desperation and utter hopelessness. I yelled at God. I swore. I pulled my hair out.

There’s no explanation for why this happens. Are they feeling pain? Is it an autonomic response? Grace wasn’t able to control it either, so I can only imagine that living in her body felt like being on a runaway train. Can you imagine…you’re just getting your start in life, learning how to feed yourself a cookie and then -BAM- you suddenly can’t grab that damn cookie and everything you just learned how to do is slipping away like grains of sand.

Point #2: it WILL end. I swear to you, someday you’re going to look back on this with relief that it’s over. I realise that when you’re going through it, that doesn’t help. But just hang in there. I swear it will end. Here are some things we learned in this period:

  1. When she’s crying, check all the normal things you’d check if a kid is crying. Does she need a nappy/diaper change? Hungry? Thirsty? Is there something poking her, pinching her? Has she recently been ill?
  2. Ok so now you’ve ticked those things off the list. Give her a cuddle. Rock her a little. Is she just plain sad?
  3. Because Grace couldn’t talk and I didn’t know if this was pain, we gave her pain relief almost every night during this period. Nothing major, just a little paracetamol (that’s “Tylenol” to you in the USA). This at least put our mind at ease in the case that this was pain.
  4. After you’ve done everything you possibly can, there must come a point where you ask yourself, “does me staying right here fix anything?” I found that staying up screaming and crying with Grace did nothing but render me incapable of functioning during the day and we had two other kids to nurture and care for. Easier said than done. I really only remember sleeping in my bed while Grace screamed like 2 times. But I do remember countless nights of sleeping with my arms around her while she cried. I don’t know how I managed to fall asleep with her screaming in my face, but desperate times call for desperate measures.
  5. If you’re married or in a relationship at this time, this period will likely majorly test your togetherness. There are striking statistics about the failure of relationships after something occurs like the death of a child or major trauma and let me tell you, this period of Rett tested our marriage. We blamed each other for things, fought about whose turn it was to stay up with her, fought because we couldn’t find out why she was crying. We vented on each other because in the dead of night, there’s no one else to lash out on. Lesson learned: give each other a break. If he/she went off on you in the night, give them a clean slate in the morning. You have enough to worry about without letting your confidence in each other to wane because of unforgiveness of naughty behaviour.
  6. If you live in close proximity to your neighbours like we do (we live in a semi-detached house) then it might help you feel better about night time screaming if you just explain to your neighbours about your daughter’s diagnosis and why they may hear her crying at night. This isn’t something we did, but I wish we had because at night part of the stress was knowing that their daughter’s room was right up against hers and I realise it may have just sounded like we were neglectful parents who didn’t tend to their baby.
  7. As much as you can, talk to your daughter and explain that you know she’s going through something horrible and you’re there for her. In fact, there was a point where we sat down with Grace and explained to her that she had been diagnosed with Rett syndrome and that it would be hard but we were going to do it with her.

Here are some excellent tips from Steven about getting through it:

  1. At night, take turns getting up. If one spouse works and the other is a stay at home parent I would recommend the one who works would get up 3 times that week and the one who stays at home 4 times. Only because you don’t want the bread winner falling asleep at work or having a nervous break down.
  2. Rotate weekend lie-ins. We do this as often as possible and it’s a great gift one can give to the other.
  3. And once the crying stops, when they grow out of it, get counselling. Individually and as a couple if needs be. You need to find yourself again. You are not just a Rett parent! You are so much more and the whole intense period of regression can make you feel like nothing more than a special needs parent.
  4. Talk about the diagnosis and the the crying to a stranger who is trained to listen and give good advice.
  5. Get away for a day or two. One parent holds it together whilst the other one gets a break. Visit a family member, go camping, hiking etc. Then the next opportunity the other person gets away. Turn the phones off when gone or ask the spouse to only call in dire situations.
  6. Husbands, become (if you’re not already) a hands on kind of dad and husband. Cook, clean, serve you wife. Put the kids to bed. Take them out for a day or a few hours and give the mum a break.

Overall, the most important thing I can remind you of is that you have to take care of you because YOU are the one who’s holding it all together. It’s not selfish to sleep. It’s not wrong to get a baby sitter and go away for the day. The dishes will always be there. Forget the washing. Accept help. We have a saying in our house “if momma ain’t happy, ain’t nobody happy.”

You can do it. It will end. You’re not alone.

Pam Almstedt Swain - February 24, 2015 - 7:54 pm

A friend of mine daughter did this, But she was older in her 20 could this be the same thing? Nothing would quite her sometimes and one time I stood outside and listen to her scream not knowing what to do. Her parents did the same hing we were all at are wits end.

Scott L. Vannatter - February 24, 2015 - 8:06 pm

So glad to hear you are holding it together. I worry about you and your family. Keep posting. I am learning so much.

Delaina Pitts Hancock - February 24, 2015 - 10:02 pm

We aren’t dealing with Rett but with two special needs children, one with Aspergers who has some big meltdowns and one with PTSD and major trauma which does result in lots of screaming/raging this was actually a very helpful article for me. Thanks for posting this.

Monique Ray - February 24, 2015 - 11:17 pm

As a fellow rett mom I have to tell you that you nailed it. I think we went through all those same emotions. You gave great advice.

Becky Vandergriff - February 25, 2015 - 12:15 am

Wow this was an excellent read. Literally all Rett parents from the start need to read this. I wish I’d have had it. Brings tears to my eyes as I remember that time. Thank you for your honesty. This will help many.

Roxanne Parr - February 25, 2015 - 2:16 am

Never realised it was so prevalent in our girls. Went through this for about 18 months.

Yazmin D Diaz - February 25, 2015 - 3:46 am

Thanks Betty! Its right on. Funny I was just talking to a newly diagnosed mom about regression.
I’m sharing this with her. Thank you!

Annette Leone-Visconti - February 25, 2015 - 7:04 pm

Although I am not a Rett parent, I am a new mom and I really appreciate all that you guys had to say. I think it’s excellent overall parenting advice. I admire both so much for your love and devotion to Grace and the rest of your family. God bless you all :-)

Sally Harpic Luxton - February 26, 2015 - 9:22 pm

Wow. I think that my daughter might of had this but not been diagnosed.

Adriana Benavidez - February 27, 2015 - 4:32 am

Wow speechless this makes families Come closer n help each other out in caring for out rett babies

Candace Elise Rodriguez - February 28, 2015 - 8:25 pm

This really help i love this article

Cathy O'Sullivan Pellegrinelli - March 11, 2015 - 10:46 pm

Great advice

Emma Elson - March 16, 2015 - 3:08 am

Does it have something to do with PBA?

Paula Woodley - March 29, 2015 - 1:02 am

My daughter is 36 and YES the screaming does stop. Years ago when we were going through it with her the only explanation I could give myself was “her mind must be in such a muddle trying to deal with losing her acquired skills and not knowing what to do” no wonder she was screaming. It isn’t a very scientific explanation but it helped. Thank you for posting your experiences with Grace, I can see how a lot of what you have said would help others. Gaynor was 10 before she got a correct diagnosis as Retts wasn’t known then. We went from me being a neurotic mum to her being profoundly disabled but didn’t know with what. Thank God there is so much more out there to help us all, yes even us oldies. Thank you.

Ashleigh Tempest - May 18, 2015 - 3:48 am

Still going through it. Music and the beach help a lot. Rock music… Crashing waves…

Monique Ray - May 18, 2015 - 8:55 am

Asheight Tempest my girl is 5. I think we have a lot of resources I am able to get my daughter all the services she needs. Also We LOVE dr. Naidu we see her and we did the study.

Help Grace’s family find a home

Grace is a 5 year old girl in England with Rett syndrome. Her family wants to keep her out of care, so the local government is helping to turn her house into a place she can live with her family for the years to come.

This is currently one of the largest builds going on in the region and due to a series of setbacks and mistakes by the council, this has been a whopping 4 years in the making! Thanks to inflation over these years, Grace’s family is now being strapped with a £20,000 bill towards the job.

So now they not only have a gigantic loan to face, but the prospect of moving out for 2-3 months while the work is being done. The council make no provision for this. There is no place to for Grace’s family to go so they need to raise the money needed to find a place to rent in the area.

Finding this place is no small feat in itself. With two large dogs, school, university and work to attend and a profoundly disabled Grace, just finding this place is going to be a difficult task.

To this end, we’re looking to raise the funds that will be needed to rent a house while Grace’s home is being turned into a place where she can continue to live with her loving family.

Will you help?

P.S. Any funds raised over and above (hopeful thinking!) will be put into the building work.

F a c e b o o k