Grace for Rett » Grace's Life with Rett Syndrome

The possibility she might die

It’s pretty late. I actually went to bed at 8 but apparently I didn’t tell the mommy fairies that I was punching the clock for the night because they’ve kept me up till midnight with boys in the bed and Grace requiring a much needed yogurt snack at 11. Who doesn’t love yogurt in the middle of the night?

As I type this I can hear her squealing in her bedroom.

Naturally, when I’m awake at night I think too much. Usually about photography and business, but tonight is different. Tonight I’m thinking about death. Cheerful, I know. And strange because I must think about this a lot more than I realise. I think I used to cry when I thought about it. I must have. However tonight, I’m not. It feels like something I must think about every single day.

When I was young -too young to have children- I had this dream. I’d given birth to the most beautiful little girl. I saw her face so vividly in my dream. I wrote about it in my diary in the morning. I remember writing things like “peachy skin”, “the softest cheek” and “the bluest eyes”. But as I stood in this hospital corridor admiring my little girl, someone began to wheel her away and glass doors closed in front of me. I just watched her disappear forever and I woke up with the most painful ache in my arms. It’s not like I had a husband I could turn to in the morning and say “honey I want another baby”. Heck, I probably wasn’t even out of high school when I had this dream. The possibility of ever actually ever being a mother to that dream baby was…well…impossible.

The ache I felt in my heart when I had that dream was never fully resolved until I was handed Grace. Fresh out of my tummy, I sat her up on my chest and felt -ok NOW I’m crying!- I felt like my dream baby had found her way into my arms.

And then, 6 months later, she

My dream had turned into my nightmare.

But not really. Because I still have her in my arms. I can still kiss her softest cheek and get lost in her bluest eyes.

But behind all of this happiness that I still have my Grace is the fear -no, not the fear- the possibility that she might die. It’s the thing that hangs between every Rett parent. Between our hellos and our goodbyes, there are the whatifs.

As a Christian, it’s quite taboo to admit that you have a fear. I use the word fear carefully. “Fear” usually brings a “tsk tsk, now now” response. “Just give it to God” they say. “God wouldn’t let that happen” they say. Yea, well God let Rett Syndrome happen. I say that carefully as well. I know that I know that I KNOW that God didn’t MAKE Rett Syndrome happen. And I’m not so sure our family would even be better off if he hadn’t let it happen. Somehow, I appreciate what Rett Syndrome has done to my family. But that’s for a different blog post. Basically, you need to know this: I trust God and I am secure in the fact that he knows what he’s doing. There’s so much more beyond this life. Don’t us humans place the most outrageous importance on what happens in this life? How happy we are, how healthy we are, how rich we are? This is just the most microscopic blip on the meter of eternity.

When we saw the geneticist to find out more about Grace’s mutation (R168X), she said something quickly about it “not being a mutation particularly associated with sudden death”. Sudden WHAT?! Death? Who said anything about death? This stunned me. This realisation that this happens. Rett Syndrome can kill. It’s why Grace is even accepted into the hospice for children to give us respite once in a while. Because she has a technically “life limiting condition”. It’s why girls with Rett get wishes granted by Make a Wish. Because they might actually be dying.

Those on the outside of Rett Syndrome don’t really know the gravity of this possibility. The uncles you see once a year who pat you on the back before going out for a cigarette, muttering something about “don’t worry she’ll get better”. I hope statements like that make people feel better about not actually getting involved. Because genetic mutations don’t just get better.

However, those on the inside of the Rett circle? We see it all the time. All the R.I.P posts about another girl or woman with Rett who has “earned her wings”. It happens. And it’s quite often unexpected. Like sweet little Livvy. Her mum blogs about her and wrote in a letter to Livvy:

“The day your body died, I remember holding you, so peaceful and still. You hadn’t been still. Your body moving no matter how much you didn’t want it to. Now you were still with a beautiful smile on your face. Peace.”

And when we went up north to visit another Rett family last year and the mum revealed to us that her daughter had many of the different elements that add up to sudden death. Steven disappeared moments later and I found him in the caravan crying his eyes out. Crying so hard. I know he was crying for this amazing family we’ve now come to love dearly. And we never talked about it after that, but I think he was also crying at the sheer realisation that this happens. That at any time, any given morning, any one of us Rett parents could go in to get our girls up for the day and she be, as Sara described in this post about Livvy, “so still. so very still.”

There are mornings where I can’t bring myself to go into Grace’s room until I’ve heard her first. And then there are mornings like one morning last week where I find Grace impossibly still. Rigid, even. With her eyes wide open and not moving. Only to find that she’s holding her breath. Or, rather, that her body is not allowing her to breathe. And a few seconds later, she has relaxed back into herself and I can stop holding my breath, too.

This isn’t a fear. It’s a possibility. Grace has Rett Syndrome. This we know. God allowed this to happen and I don’t know why but I have faith in Him. I just don’t know if he will some day also allow her to go to Heaven before we’re ready to say goodbye.

Michelle Guzman - July 25, 2012 - 12:10 am

Sweet lady, I wish I could say something that would make everything better. You are so strong and I know you must be such an encouragement to others. Thanks for sharing this.

Colleen Coombs - July 25, 2012 - 12:25 am

Oh Elizabeth, I had no idea that this was even a possibility. Of course this is scary and it can not simply be waved away with a pat answer. I am praying for you all and for our little Grace as she has become so much a part of many of our lives. Thanks for sharing your heart on this so we can pray for all of you. That is the only wisdom I have in this, just to keep praying God heals her and allows her length of days.

Sara - July 25, 2012 - 2:45 am

Oh dear Elizabeth, my only comfort is found in that promise of eternity. Knowing that this life is a small speck of our existence.

So many people say to me, “how can you have faith” after losing your child. I ask “how can I not”. God blessed me with Livvy each day, each moment was a gift that I got to open each morning.

But as you describe life with Rett syndrome leaves you with that fear in the back of your mind that tomorrow may not be.

But to be flippant tomorrow won’t be for many, but like Jesus told us worry about today.

It may sound stupid but Livvy taught me to live life, really life it. Shake up
And strength every minute out of every day. My goodness Livvy surely did, the memories we created together are the glue that binds my broken heart.

My only regret is that since Livvy died I have forgotten to do this, have left grief dull the brightest days. The crazy thing is Livvy would want to kick my bum. I can imagine her in heaven with Jesus and both of them being frustrated at my inability to learn.

We didn’t choose Rett syndrome but in a weird way it blessed my life so greatly and if I could live it all over I wouldn’t change a minute.

Hope this makes sense, I’m writing this at 3.45am in a caravan in South Wales

Julie Walker - July 25, 2012 - 8:20 am

I have spent the last 6 months in therapy frightened of losing my special girl. Reading your post I know I’m not alone, thank you for being brave enough to share this with us. Julie (mummy of Holly) x

Haydon - July 25, 2012 - 8:48 am

I know this isn’t the point you’re trying to get across at all, but I’ll say it, you guys are amazing.

Erin Eccles - July 25, 2012 - 1:26 pm

Elizabeth ~

Your eloquent way with words allows us such a small glimpse of understanding…possibly empathy to some..for the monster that Rhett is. There was no hint of entitlement, no power tantrum, or even martyrdom portrayed in the picture you created. Just a sweet sense of humility and acceptance for what God has allowed to be set before you. Not many contemplate on a daily…some days moment by moment…basis about the reality of losing our child.

“For I know to be absent from this body is to be present with the Lord,” sums up the momentum of this post – and you have put Rhett in its ugly place by squelching the fear of death that this society seems to ride on. Though, I know fear and grief ride on two different end tails, and I cannot imagine the literal heart ache that comes when contemplating the unimaginable.

Through you, I am able to visualize the grace that only God can give. It is an incredible blessing to have found your site through a friend. Know that our family will continue to surround your family in coveted prayers.

May God uphold Grace with his right hand and cover her with his left. May he stand before you, behind you, and all sides of you with wisdom, love, grace, and mercy. May His mercies be made new each morning and his strength poured out to carry you through each day. May his face turn towards you and shine upon you, and may his blessings be yours. God pour down on this lovely family…

Erin Eccles

Lynn Seguin - July 25, 2012 - 2:39 pm

I keep an angel with Rett Syndrome. I love her as much as if she were mine. She is so beautiful and full of life. She is so very smart, but getting others to see this is almost next to impossible. Her mom & dad and sisters know she is smart, and my husband and I know, but her teachers are so unbelieving. I pray to God every da and night that they find a cure soon. I love you my angel.

Judy Fry - July 25, 2012 - 3:00 pm

Elizabeth…..I, too, have a Grace but her name is Ashley, and, like you, I have spent some fearful nights with death on my mind, as well. I try not to let my mind go there, and do very well…… most of the time. But, there are those nights. Your words are touching and beautiful and express in many ways how I feel about my beautiful Ashley, who is so full of light and joy, and who brings so much love to our family. I am sending hugs your way with the hope that a few more of those fearful nights will disappear and with the hope that a CURE is in our near future! I do believe in Miracles!

Karla Pitts - July 25, 2012 - 3:44 pm

Elizabeth, today I thought to check your blog. So grateful the Lord sent me here, to pray for you and Steve, and your boys and Grace. Your mother’s heart is broken for your sweet daughter, and why not. Praying great comfort as He carries you.

kim - July 25, 2012 - 4:56 pm

wow. such a beautiful post. i found this thanks to friends sharing it on facebook. as someone who is known for their honesty (me :)) i was honored to read your honesty. my daughter has cdkl5 (deletion on cdkl5 gene, also called atypical rett) and suffers epilepsy, apnea, strange ekg,etc and will be 10 in August. it was just last year a neurologist told me we need to be prepared for sudden death. prepare for sudden death with our 9 year old, perfect daughter. prepare for that. i trust god, i am a christ follower and know where to place my trust, but to not fear is a big order. really big. thanks for your post. (((hugs)))

Susan - July 25, 2012 - 5:01 pm

Ask those Christians why they think Jesus asked “My God, My God, why have you forsaken me”. He knew all the reasons why, what it was for etc, and yet still cried THAT!

These things aren’t easy. I’m a Christian, and often I don’t get God! Not sure I’m supposed to actually.

Jill Fremont - July 25, 2012 - 6:25 pm

This is a beautiful post. This year, after having Phoebe, I have struggled with my health immensely. I have been dizzy 24/7 since her birth. Doctors call it migraine associated vertigo, but no one knows what’s causing it. I have often wondered and been mad – yes mad at God! I know some Christians are really struggling right here, but why would God give me a family and then not let me enjoy the heck out of them? It’s all a big question, but I feel like you Beth. He must know what he is doing. There must be some reason far beyond what my little mind can fathom.

Gracie is so beautiful. And the feelings you have shared from your heart, I know she understands the true love that comes from you. Thank you for being honest. Sometimes, it’s not what people like to hear, but it’s the truth and that’s what matters most. I pray that Gracie is with you as long as possible and that you will get to enjoy every day with her as your little girl and she will enjoy you as her mother. Hold her, squeeze her tightly, and give her plenty of hugs and kisses. You will always cherish those moments. We love you and your family. We know God is in control even though we may not understand and question the situation. I pray for peace for you and Steven and the boys and blessings upon sweet Gracie May. xo

Scott Vannatter - July 25, 2012 - 6:28 pm

Our daughter was born with pneumonia; I had a near-fatal stroke; yet, I cannot fully understand the fear you have to live under, knowing your daughter could die any moment. I have learned to truly live because I died. I feel that you have learned this, too. That is what I take from the situation as having God in it. Not that He caused it, rather, that he allowed me to live and to love others and simply continue to be. I will pray for your daughter.

Nadine Booth - July 25, 2012 - 8:38 pm

We have a daughter, Kimberly who is 37yrs old. She has had many health issues. She is happy most of the time. She is still able to walk. I know the feeling of putting her to bed at night,and thinking this might be the last night! Thank you for posting this! God Bless you!

Gladys - July 26, 2012 - 4:43 pm

This is the first I’m reading your blog. The title caught my attention on FB. It’s like you were in my head, that thought lingers behind the the daily “to do” and all the other random thoughts each day. As Rett Mom, it’s always there and with it comes the hope it will be calm and peaceful death,after all the struggles she goes thru daily. Kerri turn 26 on July 15th, it was a day of seizures for her, so sad.
On November 10, 2011, we received a call that our son, James,27, had an accident on his bicycle. He fell and hit his head, on November 23rd he passed away while Kerri was holding his hand. It was her angel power that guided his spirit from his body. She had the most beautiful smile on her face and her eyes were shine, she was giving him the only gift she capable of. The gift of peace. She never had a conversation with him verbally just with her eyes. She loved to give him bear hugs!
God’s plan is not for us to understand as sad as we are about losing James, I can’t help but feel now Kerri has a special angel to watch over her and when the time comes he will be holding her hand.

Nuria Dunn - July 27, 2012 - 12:18 am

It’s as if you are speaking from my heart. I can barely hold back the tears. We are the only one’s who can truly understand each other’s fears and pain. Thank you.

Bev - July 27, 2012 - 2:01 am

Please be strong for Gracie and know there are other moms out there that feel this way..Find them and seek stregnth in them.
The parents of Rett children have a stregnth about them that is like no other, it comes from from the love they feel for their child.
God has blessed you with Gracie, hold her, kiss her and feel her love!!!

Becky - July 31, 2012 - 7:50 pm

I think that people say dumb things like “I hope she gets better” for the sheer fact that they have no clue what to say. People want to make you feel better even though it’s just not possible. I cry when I read your beautiful words and wonder why some people have to go through things like this in life and others don’t. I don’t know the answer. I just know that I can’t wait until there are no more goodbyes and no more tears to cry! I can’t wait until that day that I’m not here on earth anymore. You’re right, there is just so much more to eternity.

Kerstin - August 1, 2012 - 4:43 am

Thank you for writing this. I cried and felt a connection of the “silent knowledge” that no rett parent ever talks about really but it is THERE. I carry that fear each day. Doesn’t matter if I’m laughing/smiling… having a routine day…. I always am aware of that cloud that lingers just to the left of my shoulder and in between my heart and brain.

Many times I go into Lena’s bedroom and carry her to my bed and we sleep together and I watch her and kiss her on the cheek. I just adore being able to be in her presence.

I feel scared at how much I love her sometimes.

Lena also goes to a hospice for respite sometimes. I’ve seen/met parents there that have had their child die… I just can not imagine the grief…. the loss… the barren feeling.

Kerstin and Lena (6 years old, atypical RS, unique mutation from anyone in the world apparently?? … the love of my life 🙂 ….)

Sue Rush - August 1, 2012 - 4:17 pm

Thank you. I have the same thoughts at the back of my mind all the time. I look at Amy and wonder how I would ever be able to carry on without her. She is the most precious thing in my life. I’ve never even told my husband about my sad thoughts in case he thought I was going mad! I’m so glad it’s not just me! All my love to all the Rett girls and their familes.

Marili Stylianidou - August 2, 2012 - 9:08 am

Hi to everybody.I am wtiting this from the small country of Greece.I Know that my little Rett angel Natalia of 10,will die some day.I hope she dies before me or at the same time with me.I cant stand the thought not to be near her and care for her.But we are humans ,we don’t Know our future,it is in our nature to get sick,die but also have hope for something better,so lets live everyday as it is our last and make the best of it.Thank you for sharing your fillings.

helenparrett - August 2, 2012 - 9:41 am

Read what you had to say. Sending a huge hug. I lost my daughter at 6 years old. Leukaemia. Have to say I could not go the God route. x

Holly, Mom to Bella Kai - August 14, 2012 - 7:04 pm

Thank you for sharing these words. I cannot tell you how it feels to have someone “echo” my own feelings, my worst fears. I am always holding it in, never letting it show, don’t want to upset others with this constant, nagging, aching thank you for helping me share it, which I did.. God Bless and Prayers for Grace.. always.

Michelle Gannon - August 15, 2012 - 4:11 pm

You are such a selfless, amazing photographer and person. You inspire me. My God bless your family.

natlyn - February 22, 2013 - 12:35 pm

I need to talk to you please contract me. its really important

Cynthia Benson - August 1, 2013 - 4:19 am

I’ve thought about this.

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