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 11.43.18 It’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 11.08.35 I 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.

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