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#April2016



Let me start this blog by saying… I am so fucking sick of myself. By the way, if your delicate ears cannot handle a few swear words (at least 2-300 per paragraph) this is not the blog for you.

And also, this is a super long blog, more like a novel… or a police complaint.
Many of you have asked how I am. I hesitate to answer because it ain’t so pretty. However, be careful what you ask for because today I am going to tell you… I apologize in advance.

In all honesty, I feel like a death row inmate waiting for my execution for a crime I did not commit (or, did I?). Dead girl (not) walking. I have even considered my last meal (Mrs. Wilkes Savannah, Georgia fried chicken, mashed potatoes and gravy, green beans, biscuits and 16 glasses of sweet tea). As you know, my French doctor has confirmed that I am in the final stages of ALS. I could die at any moment… but here is the thing… I keep waking up every fucking morning.
When I was young, my sister and I would get ready for bed… put on our floor length nightgowns and kneel by our twin size canopy beds, clasp our hands and pray…

“Now I lay me down to sleep,
I pray the Lord my soul to keep,
If I should die before I wake,
I pray the Lord my soul to take”
I swear to God, we said this prayer every night. I would say it, but did I really mean it? I was so young, but here I am, aged 46, finding myself laying here sacked with ALS looking out my window of the Palais Royal and uttering the same prayer…

“Now I lay me down to sleep,
I pray the Lord my soul to keep,
If I should die before I wake,
I pray the Lord my soul to take”


But this time, I mean it. I am ready to go but every morning I wake up and think to myself, “What are you still doing here, moron?”
For the past almost 6 years, ALS has been hard… very hard. But now, these past 2 months have been complete hell and I did not think that I was cut out for this kind of struggle and I was resigned to let myself succumb to the inevitable. I mean, how would you feel if you could not… hold your head up, open your mouth wide enough for a toothbrush to fit, swallow your favorite chai tea with vanilla soy milk, eat even old lady mashed potatoes or a fucking raspberry, or most importantly, dictate into your voice recognition software… which bring me to my next grievance…

Autonomy is the key to life. It truly is. Try having it taken away from you for one day and you will realize the importance of it. My voice recognition software was my autonomy… my freedom. I emancipated myself from ALS with my computer. I could do everything… my blog, my book, my shop, my emails, surf the web, write letters, research exhibits and do exactly as I pleased… and now that has all been taken away because my voice is too weak… and it is quite frankly, driving me crazy. I now have to rely on my 3 caregivers. Caregivers they are… executive assistants they are not. Try asking a grown Filipino man to design a Paperless Post greeting card for you. Let me tell you, it’s hell… Hell on earth. They are ready to kill me… and the feeling is mutual.

So I continue to ask myself, “Why the fuck am I still here?”
I thought that I had my house in order and was ready to depart. I even went to my beloved church and said to The Man, “Dude, I’m ready. Let’s go.”

However, for some reason, I am still here. Why? Why? Why? What else do I have to do, to accomplish, to resolve, to prove?
It turns out I don’t have to do any of those things… I only have one thing to do… continue to raise Gracie. Not that any child is ever “ready” to have their mother die but I thought that Grace was “ready enough.” How stupid was I? For Grace’s entire life she has been perfect. She has never even had a “time-out.” I never even needed to baby proof our house because Grace never touched anything… she just sat there, darling as ever, looking at her books. Even her teenage years were flawless. And then, #April2016 happened. Gracie decided to turn into an asshole. An asshole with support… let me explain.

I am not a conventional mother. That comes with pros and cons. Grace is my life and she can do no wrong in my book until she does and then my “unorthodox” parenting skills come into play. My husband explains it as, “You let Gracie slide and slide and slide and then you explode.” C’est vrai. It usually goes like this, “Gracie, please clean your room. Gracie, clean your room. GRACIE, CLEAN YOUR FUCKING ROOM!” She usually just ignores me and cleans her room whenever she sees fit and I usually just let it slide. However, there are certain things that I do not let slide… school work, job responsibilities, politeness, thank you cards and taking a minuscule responsibility in me.
The first day that I was diagnosed with ALS, I made a promise to myself not to burden Gracie with my bullshit. This was my disease and I wanted her to have as normal of childhood as possible. David and I have made this possible, thank you very much. However, occasionally, little Gracie is expected to help out. From time to time, caregivers flake… they are human (which is not an excuse, in my book). This is when Gracie has to help out, for fucks sake. She hates it, I hate it, David hates it… but it is necessary sometimes. Such is the case of #April2016. I had to unexpectedly fire my new caregiver because he was caught taking pictures of me while I slept. While I was flattered, I still had to let him go. Relax, I rehired him because he is a great caregiver even if he is a little bit creepy. I am laughing because he is the one who is typing this. Anywho, being one caregiver down, poor little Grace had to help out… for 4 hours. Boo Hoo. Grace protested. I exploded.

To make a long story short, Grace decided that this was the perfect opportunity in her career to rebel. Gracie convinced her (part-time) biological father, Dylan, that I was a lunatic and was, I think she cleverly used the term “psychologically verbally abusing” her by calling her a “selfish pig”… a la Alec Baldwin. I have no regrets, she was indeed, a selfish pig. This is what I was talking about with my unorthodox parenting skills. Well, Gracie didn’t take kindly to this criticism and decided to… convince her college professors (and the dean of her school, for that matter) that she was “under undue stress” and needed to excuse herself from the last month of the semester and finish her projects “remotely” and fly to California “to recuperate.” While I commend her for her initiative and manipulation skills, her actions are wholly inexcusable on every level, especially the part where Gracie did not tell me ANY OF THIS! Yes, you heard me correctly, I did not know about any of this. However, Gracie’s father knew… he paid for her plane ticket. Gracie’s aunt Heather knew… she called Gracie’s school to confirm Gracie’s request. Gracie’s grandparents knew… they picked her up at the airport. David knew… he ordered her an Uber to go the airport. My best friend, Jenny knew… she told Gracie that Gracie could stay at her house in LA.
NEEDLESS TO SAY,
I FUCKING EXPOLDED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My whole world collapsed. While I was busy trying to recuperate from the hellish previous 3 weeks at the palliative care center, little did I know, Grace and her cohorts were busy scheming for Gracie’s departure. Trust me, this took some planning. Without boring you with ugly details, mark my words… the word “catastrophic” does not do the situation justice.
The funny part and most rewarding part (for me) of this whole ordeal is that Gracie’s father, aunt, grandparents, David and Jenny were all used, unbeknownst to them, like pawns in Gracie’s federal prison like scheme. Gracie led all of them to believe that the stress of my ALS was just too much for her and that the stress of my ALS was affecting my “cognitive reasoning” and therefore, poor little Gracie needed to escape. What these fools didn’t know was that Gracie, in actuality, didn’t want to finish a 30-page school research paper due at the end of May, that there happened to be a boy in Los Angeles that Gracie wanted to see and she was craving an In-N-Out Burger. Of course, this gaggle of morons was not privy to any of this because they were under Gracie’s charming spell and because THEY ARE NOT HER PARENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And by the way, my cognitive reasoning skills are in tip-top shape… ask my doctor… and this is why I am fully aware of Gracie’s bullshit. Oh, also, Gracie told everyone that I was a terrible mother because I wouldn’t let her go to public school. Ask me if I care? By the way, this was the public school that had an on-site daycare for the student’s babies!  
Want to know my mental state after Gracie got on that airplane leaving Paris and me? Cry me a river is an understatement. Furor and revenge is more like it. I knew that I could get Grace back under control but what was more upsetting to me was the betrayal of those whom I trusted to take care of Grace in the likely event of my death. Here they were faced with Gracie’s first indiscretion and they failed miserably. I mean, c’mon, who lets a kid leave school before finals and go on vacation to LA leaving behind a mother who is about to fucking die? Idiots, that’s who!

So, now, I can’t die peacefully as planned. Now I have to stay alive to continue to raise Gracie because I don’t trust anyone else to do the job up to my standards (except Yolanda and Diandra, of course). I even went to my church and had to ask God to retract my request.
So, here I am, forcing myself, willing myself to stay alive. Ask me how difficult this is? I’ll tell ya…

ALS is ravaging my body. I spend the entire day fighting whatever it is that is trying to kill me. I have quadrupled the dosage of an experimental “drug” that is supposed to block the toxin of ALS. I never did this before because the safety has never been proven, but now I have nothing to lose, so fire away. I take it 10 times a day. I shove in my feeding tube every half hour the following: Kale, spinach, cucumber, fennel, coriander, coconut water, coconut oil, carrots, green peas, whole grain brown rice, sprouted quinoa, sweet potatoes, garlic, rosemary, ginger, lemon, flax seed oil, turmeric, almond butter, beets, pomegranate, blueberries, celery, broccoli, garbanzo beans, seaweed and every other healthy fucking thing I can think of. Bored yet? Think how I feel… I do it every half hour. Every half hour! I do it because I cannot die yet and let those incompetent Judases parent Gracie.
After 2 weeks of ranting and raving, I got Grace back to Paris… we had some words… she apologized… I did not (because I do not negotiate with terrorists)… and we are back on track. No, I do not forgive Gracie’s accessories in her crime… they can all fuck off except David and Jenny who I forgave… just because.

Sorry for this lengthy explanation but remember, it is your fault because you asked how I was doing.
So, where do we go from here?

I have decided that I will not leave this earth without kicking and screaming, fighting tooth and nail no matter how ugly it gets, even if I am on my last breath… I will not abandon my post… my daughter. This could be a week or 3 months. The stages of ALS can vary. Isn’t that fun?
I am sure Gracie will be just thrilled. To reward Gracie with her bad behavior I have decided to over-parent her even more than I already do. I have secretly inserted a tracking device under her skin… just kidding… no I’m not.

In the meantime, while I am trying to stay alive, I thought we should make the best of it.
Let’s talk about adaptation… I have had to adapt to a lot. Canes, walkers, wheelchairs, feeding tubes, handicapped toilets for fucks sake, breathing machines, daily medication, caregivers and adaptation computer software. I always told myself that I had my limits as well. I told myself that I would never live past the point when I could not speak. What’s the point, really?

But here we are… I can barely speak but I need to! So what are we going to do, my friends? I have to adapt, obviously. Enter Eye Tracking Computer Software. Geeky and embarrassing, I know, but fuck, what else am I going to do? Gracie needs her mother! I guess I should be grateful that eye tracking software even exists but #ItSucks.
On top of having to need eye tracking software, now I have to pay for it and it is expensive as fuck. If you want to know how expensive ALS is, please refer to everyone’s favorite blog posting of mine titled, Dear Fat Fuck, HERE. Leave it to me to get the most expensive disease on earth… 24 hour caregivers, breathing machines, imported feeding tube formula, medication (FDA approved and non-approved), doctors that charge 150 euros per hour, kinesiologist, massage therapist, daily nurses, and blah, blah, blah… I am so high maintenance it’s revolting. Thanks to my best friend, Yolanda Hadid, who established a donation page for me, HERE, I can afford some of the cost but it in no way covers all the expenses of ALS. Thank you to all of you who have donated and thank you to Yolanda.

Also, I want to thank all of you for your cards, gifts and flowers. Remember when Gracie called you my “imaginary friends?” Well, that same Gracie would rush over to my apartment and eagerly open every single one of your cards and read your kind words to me. One day, my caregiver, Michael, started to open the cards and Gracie protested, “Let me do it!” She loved it. Imagine that!
I am grateful that Gracie and I recovered from #April2016. The good news is that I know how to multi-task. I will continue to hover over Gracie, I will learn to adapt to the eye tracking software, I will continue to take pictures of the hot French guy outside my window and post it on Instagam HERE, I will continue my blog, go to exhibits, try to stay alive, take illegal medication, share my life with you… AND… I will reopen my shop!

You won’t believe this but little Gracie finally decided to take an interest in my shop. She has been in training for almost 21 years and has a trained eye that rivals the best of them. She can spot chinoiserie from a mile away. She knows good gilt mirrors when she sees one and her computer skills are magnifique! So Gracie is now my #1 Have Some Decorum Shop Girl. We have put together a fantastic collection of antiques that will be available next week!
As my friend Hollye says, “Look for the silver lining.” Even though Gracie and I barely survived #April2016, we did come out of it with a new understanding…
I am her mother and what I say… goes.

Thank you for asking how I have been doing. Are you disappointed that you did? Didn’t expect all of this, did you? I am sure many of you, if not all of you, have some sort of similar experience with your children as well. I am laughing thinking of the comments that I will receive for this blog. I swear to God, if any of you dare to tell me that Grace is just acting out of anger because of my ALS, I will puke. She isn’t… she just didn’t want to do her homework for the first time in her life.

THE END.

132 comments:

  1. Ellie, you are indeed fierce! You redefine the word! I'm so grateful! xx Valorie

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  2. Extraordinary Ellie, as I read your post, I am overcome with joy that you continue to give us, your beloved friends, a gift of love and laughter through your wonderful blog. That gift, sweet Ellie, is your insurmountable will and spirit. How do you do it? Every day I think of you and want to thank you again for all that you have given me. You have no idea how much I have learned from you, my lovely friend. I am so very, very sorry that you are going through this horrendous disease. Your love for Gracie knows no bounds, and Mother of the Year should be yours, bar none. Sending you a gigantic hug and kiss from Broomall, PA. xoxo Gina

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  3. Best blog ever! Good for you!!!
    You won the award for "Fuck You, ALS" and "Mother of the 2 decades and 1 year".... Gracie will be forever grateful for your parenting and your fight! Keep kicking her ass, ALS ASS, and keep on keepin on! #AdmiringYouFromMississippi

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  4. You go, girl. I am so glad you got Gracie back. I read this holding my breath, unable to believe all you've been through.

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  5. It appears that God and Gracie are not done with you yet! Xoxo

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  6. Ellie, ironically and spectacularly, you are so full of life. Gracie is keeping things interesting, and perhaps this was her way of showing that she still needs you in her life. She is so lucky to have a mother who loves her more than anything in the world, and every day she has you is a gift. xxx

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  7. Oh boy Ellie, I dk what to say! You are a strong women and I don't even know how to call you! Even if I dk you, I feel for you which is pretty amazing, I feel sad, angry,frustrated and then I can't stop laughing. You are just so special (in the right sense) and I wish I could do something for you to stop your suffering! I wish I was closed to you and could visit you and talk and laugh with you! I'm sure that your blog friends feel the same way, we wish we could be there more for you but how.... It's easy for us to say don't give up, keep going but at one point the suffering has to stop? My mom was in an hospice for 3 weeks and I stayed with her 24/7 and at one point she knew it was enough but she woke up every morning for a while.... I dk if what I'm saying make sense my first language is not English but I certainly hope that you read me and understand what I'm trying to say. Love you, big hugs to you and Gracie. xoxoxo French Girl from Quebec city

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  8. I cannot express to you how much I enjoyed this (sorry, Ha!). I have a feeling that my darling 18 year old daughter would LOVE your daughter, and you. Stay strong and stay feisty. Your daughter wouldn't want it any other way. Same goes for your many fans. XOXO

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  9. I cannot express to you how much I enjoyed this (sorry, Ha!). I have a feeling that my darling 18 year old daughter would LOVE your daughter, and you. Stay strong and stay feisty. Your daughter wouldn't want it any other way. Same goes for your many fans. XOXO

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  10. I am sitting outside church reading your blog. In Ecuador. Every single time I read anything you write I smile. Love your personality and the way you handle this awful ALS. Waiting for your book to arrive from USA and now waiting for your online store. Going inside church in a few minutes and will pray to give you strenght to keep fighting ALS to continue raising Grace.

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  11. I knew you were rallying and not embracing death. I could feel it. Though I thought maybe it was a spiritual epiphany not your daughter's aversion to homework. Either way, you're not done yet and it was evident. So keep at your post and better to die embarrassingly and with some flair at a flea market than with "dignity" huddled up at home. What was he doing with the photos? Please make him answer. Was he thinking this was a Joan Rivers kind of thing? Or did you just make interesting snapchat content? Do you think there's ALS fetish porn? Hahaha you might be a star in a dark, dark corner of the Internet and not even know!
    Daughters are so evil to their mothers. I hope Gracie at least had fun on her escapade and I'm glad you didn't die just to spite her. I probably would have. Did she have to finish the paper? I hope not.

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    1. Oh my GOD Stephen you crack me UP. Ellie, so wonderful to read your blog post.. although sorry to hear about the trauma you went though. People need to realize that mothers ALWAYS know. I'm delighted to hear that your store is opening again. I can't wait to get my hands on some of your goodies :) Love to you, David and Grace. xxxx

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  12. Darling Ellie, I don't even have the words to express my sadness and anger at what you have been through the past few weeks. I do hope that Miss Gracie will be on her best behavior from now on. I live in California, so I do understand the need for the In-N-Out Burger fix but what a con game! You have more strength than anyone I know and I look forward to your future posts and the "shop." You're one in ten million!

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  13. How are you not in jail for murder? Mothers love no doubt. Thank you for your honesty, wit and keeping us updated on the good bad and ugly. Fuck ALS. Big hug from Philadelphia

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  14. You are a spectacular parent and Grace is fortunate to have you as a mother. As always,I continue to be amazed at your courage, fight and especially your quick wit. I am sending love and light. P.S. why the fyck do th r se terrible diseases happen to fabulous people!

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  15. HA! You know things only a mother would know. I loved every word and read it several times. My girls are all in their 20's now but totally recognized when they were acting up like the little shits they could be. I am so happy you are still here and ranting. You are so real and I love every word you say. Hanging on every word here in Alexandria, VA. Almost finished your book - so good.

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  16. Love, love, love you Ellie! Stay fierce and sassy. Yes, Gracie needs you but so does the world. The world is better with you in it. Thank you for fighting to stay alive. PS. I don't negotiate with terrorists either

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  17. Cheering for you, Ellie, here in NYC!!!! You are incredible!!!!!

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  18. It's so nice to "hear" your voice. Your doctors should not underestimate the strength of a fierce mother.

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  19. God Bless ELLIE for the FIGHT.....I know for a fact, she will look back and read this and understand the true meaning of having a mother and BEYOND lucky she had YOU......This is the best BLOG ever and has LEGACY written all over it..........I know Gracie will be your legacy..now after reading this... Everyone wants her to be but now... She is guaranteed...I know she will carry on with your blog, (we all hope), the store and the your SPIRIT. She will will succeed? Yes? SHE will indeed? (98 and ¾ percent guaranteed)…… "DR. S" Wow Ellie - I think your little girl just grew up by coming home - and not to see you die but to see you continue to be her MOMMY and LIVE!!!!Then can have all of us for the rest of her days.............. which we might not be so imaginary after all... and she will always have a place to stay if she ever returns to NYC in my home and she can walk the streets of NYC you walked with HIGH Heels on.........IF I do meet her - I will for sure give her a HUG and say - This is from your MOM...........Love you Ellie.... continue to conquer your days.. LOOKs Like you are..... oxoxoxoxoxxoxoxoxoxo

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  20. Yay!! So good to hear your voice again & so happy #April2016 is behind you. xo

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  21. Brave warrior mama, keep fighting the fight. We are all cheering for you and Gracie will have a team of nosey mamas keeping an eye out for her on your behalf pretty much forever (think Eye in the Sky jacked up with bourbon.) xo

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  22. Oh gracie..darn kids will do anything to get out of homework .....I did chuckle though...you're exactly where ur supposed to be, pls don't leave us...we need you too ! Sending big love....xoxo Jeannie

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  23. You are fantastic!!! Fierce, incredible and brilliant!!!! I am sorry you are suffering. It's not fair! Love to Gracie and of course to you!

    Xoxoxo Elena

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  24. I am a 45 year young gal fighting MS. My motto is Fuck All Y'all! Her family who helped her run away should be ashamed. I wish I could sit down and visit with you, as you are my hero! Peace be with you Ellie!

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  25. Ellie - I love you. You get a Medal of Honor in LIFE.

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  26. Damn girl! This is one good post! I absolutely love your honesty and determination. I have to say that you were just what I needed today. You have helped me get out of the uncharacteristically poor me feeling that has been plaguing me lately. I have been dealing with Lyme disease for going on 38 years and it's as you know with your friend Yolanda, it's a struggle. As I was reading your amazing blog of pure honesty, I found strength from it. I found calmness too because you are living your life authentically even with your many freaking issues. That is not easy. Yet,you find a way to be you!
    I wondered as I was reading it how you were so clear minded and cognitively sharp. And you addressed that. Also what came to mind right away was you're here because it's not your time to go. There's still a purpose for you. And your purpose is my purpose. Our children. We may not be able to be the type of mothers we would love to be because of our health but....that won't stop us from mothering.
    How honest you are with your daughter will be her saving grace one day. There is no bullshit and if there is, you call it out. That's rare nowadays with everything being so P.C.and.....there's way too many fake bullshitters in this world. You're a gem in this world.
    Thank you for sharing yourself so honestly. And thank you for helping me. You find humor even in the worst situations. I love that! I really wish you lots of love and as much peace as you can feel with your stuggles. Xoxo

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    1. I'll second that...about 26 years with Lyme for me, plus mold illness. Sometimes regret not being the mother I might have been, but the kids learned things from our situation too. And I'm also finding inspiration all over the place, especially here!

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  27. I am so grateful that Gracie was an addle brained little momentary brat. She is the best daughter in the world!
    I am simply mind blown at your effort here and I sucked up every word like it was manna from Heaven. Praise to you, my crazy, angry, beautiful, amazing guru/friend! Thank you for sharing all of this, it is pure Ellie!
    Tons'o Love and admiration from Portland,Oregon.
    I now have to go look up eye tracking soft ware and be even more amazed at your blessed fortitude !!

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  28. Bring it, Girl! Your inspiration is completely changing my world. And I needed it. The universe has big plans for you. Keep going! Sending love, Amanda

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  29. Ellie,
    I just adore you for many reasons. Mostly, I am impressed with the immense depth of love you have for your daughter. I am a 4th grade teacher - and, honestly, not all parents truly love their children. It is HEARTBREAKING.

    With a chronic illness, people close to the sick person get "empathy fatigue". I am going to guess this is what Grace has - because after 6 years, your ALS has become her new normal. For your sake, I wish that hadn't happened. Selfishly, I am sorta glad she acted out so that you will want to stay with her (and, in turn, all of us) for a bit longer.

    After reading your book (which I LOVED, BTW), I thought that it might be Gracie's future calling to run your shop and continue your decor legacy. I cannot wait to see how it goes!
    Lots of love and prayers,
    Michelle from Santa Barbara

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  30. you are freaking hilarious!!! i love that you are continuing to fight for yourself for Gracie. i just got a baby girl (had her about 18 months ago) and your parenting tenets inspire me :)

    so glad to hear that you two are working together on the shop. much love from NYC/hudson valley.

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  31. Very sneaky way for them to keep you kicking. I read somewhere choose your battles, so after 3 clean your room threats I'd give up, and my two sons are slobs (charming, hard working and smart slobs.). Keep blinking, you're a great mom and person.

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  32. I never met you, but God, I just love you! Bravo, Ellie!!!

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    1. Was relieved by the tone of your latest...fierce dynamism...that's our gal...
      Sorry about the round-the-world escape Gracie "arranged" with cohorts, but if
      if evolved into the realization she could run the shop and do you proud, so be it. Thank you for humbling me, Ellie love, by making me realize if you can do it, so can I...and I don't have the mountain to climb that you do, dear one.
      Each morning we connect through my prayers for you and the Lord knows the right moment and circumstance when your purpose will be fulfilled...In the meantime, we are all embracing you in love and gratitude.

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  33. My emotions ran the gamut as I read this post. I started off fearful and dreading the end, switched to horror and humor over Gracie's escapade, and ended with a huge HOORAY! Ellie's not giving up! Peace and blessings, Ellie, from MS.

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  34. Master criminal, indeed.

    Shortly after my 40th birthday, in the middle of a quite ordinary conversation, my mom told me that I'd never caused her any trouble or given her any reason for doubt. I had to sit down with a glass of water. I wanted to say "who are you and where is my mother?" but the shock of what I had just heard had taken away my power of speech.

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  35. Haha well done Ellie! My older daughter is the same age as Gracie and I'll tell you she can be a real little shit. Almost grown-up but not quite, very smart but an opportunist... like your Gracie. Keep fighting, we're cheering you! XOX

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  36. Well if April showers bring May flowers and if "God laughs in flowers" then I pray you have the sweetest May possible.

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  37. To all the misguided "do-gooders" NEVER get in the way of a mother; no matter she is debilitated by the horrible ALS disease. It will not end well in your favour. Thankfully this has rekindled your spirit Ellie until you decide your job is done.

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  38. Well if April showers bring May flowers and if "God laughs in flowers" then I pray you have the sweetest May possible.

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  39. Oh my goodness. This and your Fat Fuck post made my day. You are a fantastic writer, and a shining light. That you can be so much fun while undergoing what you're going through makes you an absolute hero to me. You keep waking up because the world needs heroes. Brava, Ellie! May you find peace and continue to find and bring joy in and to the world. xoxo from dowdy old Massachusetts.

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  40. I have raised 3 daughter's 32,27,21 they live in TN and just today one called crying had her put her sister on the phone so she could cry and bitch about the oldest yup they all live together because they are thick as thieves and they grew up with a Mum with a mouth like a sailor so they kinda know when I am pissed! It never ends this I know...I feel ya Ellie the struggle is real.

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  41. I'm speechless about the situation you describe with your family aiding and abetting your daughter and I am glad to hear she is back. Young people can make mistakes but adults should have more foresight - Grace would have carried a burden of guilt for her entire life if she had missed the chance to see you again. Strength and courage to you Ellie.

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  42. I read your blog and thought, "look out world she's BAAAAAAACK!!!" It was written by that gorgeous sassy broad that was seated at a darling Parisian cafe....puffin on a fag, drinking red wine through a straw, and declaring to anyone within earshot that her husband was a complete "douche bag". I totally had my first girl crush!!! 3 years has passed since that fateful day. I've seen the good, the bad, and the ugly. I've lived with you for months and have witnessed what a "day in the life" means for you. It ain't pretty folks. 99.9% of the world (including myself) would not have made it to the point you are today.

    I too have perfect children. I was preparing to write a New York Times bestselling book informing all of the idiots in the world how to raise responsible, respectful, cultured, well mannered young adults. I noticed my 18 year old perfect princess had her tiara slightly off to the side. It began to wobble, then crashed to the ground, then she was pole dancing (not in the least bit Regal or Royal).
    These kids need their Mommas as long as they can possibly have them around. El I love you with every ounce of my heart and soul. I could NEVER fully know what you are going through but I have a fair understanding. Wait, maybe I don't have any kind of understanding. My cognitive thinking is permanently damaged, so scratch that last comment.

    Thank you for keeping Gracie out of the strip clubs and focused on selling antiques. The antique business will come in handy when her boobs start sagging.

    ILY!!!!

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    1. Hi Debbie. Your second last paragraph made me smile. Very true indeed! Although this late teen crisis selfish thing has me rattled a bit. My own gorgeous teen is 14 & 1/2 and I'm not looking forward to her crisis moment, when I'm going to have be all mama bear & cry out, what in the hell do you think you are doing??? Den xxx

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  43. I did wonder how you were doing but felt if I asked it would be an intrusion on your privacy....sounds like you really know Gracie well and obviously she could fool all the others but not her own Mother!
    Hope my card made it to you...
    Thank you for sharing your journey with us...I read your book and I laughed and cried....you are one amazing lady.

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  44. BWAhahahahaaa!!! You make me laugh out loud, you really do. Now you and Stephen Hawking have even more in common (other than the obvious genius qualities, of course) since he uses the one muscle he has left in his cheek that works to run his whole life. He got ALS young, just like you, and look at him! 74 years old and still solving the worlds biggest mysteries...just like you. Keep on giving them hell Ellie!

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  45. Well I'm glad I'm not the only one that tells my daughter she is a "fucking moron", and asks her whether she is"intellectually delayed or just a selfish fucking cow"? I must be an unconventional parent also - we love big, but fuck we fight big too.

    I had family members try to organise a coup against me with my then16 year old daughter too, I am pretty sure my childless relative was just trying to steal her as her own. Fucking ANGRY doesn't cover it. I forgave them though (sorta) but only because that is a-whole-nother level of stupid FFS. Also, I think those skills of manipulation and organisation will be useful at some point, just say they had to get out of an abusive relationship? Although I'm pretty confident that given their gumption that is never going to be an issue - well unless they are the abusers.
    Hang in there. Sorry to hear about your neck and your voice. I actually can't think of anything more fucking irritating than that. How can you tell everyone what to do and when they need to fuck off - just thinking about it is giving me the shits.
    Much love from down under.
    Elsa, Emelia, Ellen, Effie. xxx

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  46. Fight on, sister.

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  47. you slay me. my eldest boy is graduating high school in a couple weeks. he has never done anything wrong except be an asshole.
    i love that you have shared your highs and lows with us. it does help us to be more real. so thank you Ellie.
    you are a genius to be able to live and tell/die and tell.
    we appreciate your candor, the full breadth of your experience. it sucks that you have to be and do all of this. i fucking hate it for you. it is so fucked up.
    but hopefully you will see spring turn to summer peacefully. so, keep in touch. love and blessings Ellie.

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  48. Oh my god, I love Gracie! Teenage girls are positively Machiavellian when it comes to getting what they want. From whom could she have inherited that evil genius? As for you, I knew you couldn’t go quietly! You’re back with a cause and with a vengeance. The best news EVER.

    XOXO / Nancy

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  49. Dear God you love that kid fiercely! You three have been on an incredible journey..... no one could have done it better. Sending continued love and prayers.

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  50. Mother of the Year! Of course there is a reason you are still here. You are still very much alive - more than most - and you are still a mom. And you will be Gracie's mom long after you are gone from this earth. You will always be with her. And selfish little me, is thrilled, relieved, ecstatic to read this post and witness the fire that still burns in your soul. I knew that Gracie flew to the states in April. I started following her Instagram (I know - I'm a stalker) just to keep an eye on her for you. I want to be one of those people who bump into her (in Marrakech perhaps), give her a hug and tell her it's from her mom. Anyway, I couldn't figure out why she had left Paris - I was worried - for her - for you. It all makes sense now. And I am going to put a card in the mail tomorrow so Gracie can open it and read it to you. You hang in there Ellie. You are our hero.

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  51. a mom's love and determination has no end. You showed your daughter that and made her a better person for it. Yes what your family did was bullshit and i hope they are full of regret for it. Stay strong ,love and prayers

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  52. I love you!! And this post - laying it all out there with your signature humor, wit and brilliant writing style - made me smile just picturing you taking control of that dreadful #April2016 situation. And I MUST get my hands on something from your shop next week. Much love to you and Gracie and even sneaky David. Keep fighting!! xx

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  53. Like I said the first time we communicated...YOU ARE A FUCKING ROCK STAR!! You're back! and we are all so relieved!! xoxoxox

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  54. I'm just a lil ol gal from the deep south of Loosiana, but geeze I wish I could come be your caregiver!
    My family wouldnt understand and my husband of 39 yrs would not understand, but right now I truly feel like I am destined to be your right and left hand as well as your voice.
    Would be there in a minute......your strength makes me a better person

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  55. You are amazing and incredible Ellie. Sending you love from Australia xxx

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  56. I am so happy you're here. The one and only! Love you Ellie!

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  57. It's Friday night in beautiful Vancouver, and I have had three glasses of wine. So what! I can write from the heart with wine or without wine. You, Ellie, are a gift to this world, but probably in ways you do not know, and in ways that you might think are important but are not and in ways that go beyond what you think are important... I do know that you are loved, and everyone in this world takes a long time to wake up and be conscious of the life that truly surrounds them. You are not over; be strong, stay connected to that amazing spirit of yours.

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  58. I love you Ellie, and I want Gracie to marry one of my three sons, so she can be the girl I never had, and you and I can be crazy mothers-in-law together. Very bizarre coming from someone who's never met you or Grace, no? I hate what's happening to you but I love hearing from you. And I'm so excited about the shop opening again! I never was quite quick enough to get what I wanted, but I'm about to begin a kitchen renovation and my little butler's pantry will have the most amazing marble counter and Lee Jofa 'Riflesso' wallpaper and black cabinets (critique if you want), and I know I will find something perfect in your shop for the space. Not only do I look at interior decor differently since reading your blog, I look at all of life differently. Your spirit is huge! Thank you for sharing -- xoxo

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  59. You take my breath away, Ellie. This update was perfectly presented. I have been very sick, for twelve years, and you consistently throw cold water in my face...helping me see that my problems are not the end of the world...or my world. You are a warrior. We obviously haven't met, but I feel like we're friends .... I hope that doesn't freak you out!
    Praying for you and your family....much love...Cathy

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  60. Ellie, I am glad you did not apologize, because that would have been ridiculous.

    In the immortal words of DEVO:

    Crack that whip
    Give the past the slip
    Step on a crack
    Break your momma's back

    When a problem comes along (You must whip it)
    Before the cream sits out too long (You must whip it)
    When something's going wrong (You must whip it)

    Now whip it
    Into shape
    Shape it up
    Get straight
    Go forward
    Move ahead
    Try to detect it
    It's not too late
    To whip it
    Whip it good!

    When a good time turns around (You must whip it)
    You will never live it down (Unless you whip it)
    No one gets away (Until they whip it)

    I say whip it
    Whip it good!
    I say whip it
    Whip it good!

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  61. Your instincts are right. We moms that really listen and watch our children, know when to push. If we are fair, being tough is good and honest.....that is part of life. I think of you every day...aside from the chinoiserie desk set or my french deco espresso cups purchased from your shop....your spirit reaches over land and water and right into our hearts. xob

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  62. Ellie, so glad that you have not lost your spunk! And even more glad that you are not ready yet and retracted your prior offer to go because it was time, We all love you and want you to stay around xoxoxo
    Lourdes

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  63. Ellie...it's Melinda....you have always been fierce and will remain fierce, lovely, elegant, offensive, beautiful, timeless, classy, and absolutely outspoken...thank goodness...you are following you heart and so many people are following you. Your instincts have always been right. Your judgement has always been right. You have raised a gorgeous daughter that does the same. It is what it is. Thank you for fighting the stellar fight. You inspire me...forever...my bestie from eons ago and for eons forward. Stay strong my friend...and fuck everyone that offends you!!!

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  64. That was great because it was very open and honest.
    Sheila in Port Townsend

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  65. Hi...it's Melinda again...:) love you

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    1. Oh Ellie, another spellbinder!! Not only did you get Gracie on the right track, you saved her from a lifetime of super guilt! You are my hero...so much to learn from you! I love you El!!!!

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  66. I was so scared at the beginning and so crazy delighted and relieved, as I read on, when I realized you were back!!! I can't believe how your brat manipulated the morons... I can't believe the MORONS! This is funny, heartbreaking and everything in between! Why are you still here you ask? Because you are the only one who can. Unbelievable! Your strength and determination, your intensity and your passion for life and your daughter are unparalleled ... You live a life way more intense and profound than most of us... You have lived already a remarkable one and continue to do so, I'm beginning to believe that you are the one who's going to find the cure for this freaking illness! I don't know where the hell you find the power and strength to fight this the way you do, it's like your winning, yes, I know that not being able to even hold your neck must be one of the worst things ever but you mind is as bright and witty as it's ever been and you have become an amazing writer, please don't give up, I love seeing you angry, it brings the best of you Ellie, you really kick ass!
    I'm still mad at Gracie but it's because my 20 and 22 year old boys make me crazy sometimes and I can absolutely relate to that!! Still, I will give her a million hugs from you and I would give her advise, (Ellie style of course!) if she ever need me too Thank you for your incredible honestly, for never embellishing things and for telling it like it is, making us feel normal and not alone in our flawed humanity.
    Still loving you from far away and sending prayers and blessings for you our crazy beautiful naughty girl. Xx

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  67. Lying in that bed, with your wobbly head and your almost inaudible voice, you have more guts, wit, insight and integrity than the rest of the whole wide effing world! The older I get the less I understand about this mysterious incarnation we call Life. You're magnifique Ellie darling, keep making the best of it xxx

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  68. Mama knows best. Especially fierce Mama.

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  69. Thankful......I am thankful that you are a fighter....I am thankful that your caregiver is still with you to type this post for you.....I am thankful that Gracie is back in your good graces....I an thankful for your honesty.....and most of all I am thankful to call you friend! You are loved beyond words.

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  70. My husband committed suicide on 2/9/16 (apparently he was into prostitues and had gotten caught). My daughter, 12 (now 13) and I were left behind. My two mottos for this life are this. "We are going to rock this life" and "When we need help, we will not wallow in misery or despair, we will get help." We are both back to life in all senses and although there is pain and heartache, we march on and do not make excuses. Your writings have helped me see that although we cannot control our circumstances, we do control our actions. I've never had a hero, but now I do. You are mine. You've taken the worse and made the very beautiful. I, in Michigan, will hold my daughter to the same high standards you hold yours to, as it is what a marvelous parent does. You are marvelous.

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  71. Thar She Blows!!!!! Good for you. For your imaginary friends it is a welcome Proof of Life and a sweet relief that you're still among us. You gotta release that frustration and pent up energy, and here is the best and safest place to do it.

    You may feel like yesterday's flat champagne and cold escargot, but the life force in you is potent, so eye tracking software it is.

    Rage is a powerful motivator. Go on with your bad self, Ellie, you're greatly loved.

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  72. HI Ellie: Oh yes, I have been there with a daughter who is now a grown adult in her 40's, and we still have our moments. I am guilty of putting too much emphasis on her life and not enough on my own, and she now believes she is some sort of privileged princess. My own doing, and I'm learning to undo what I have done wrong. No one's fault but my own. I have also know the betrayal of close family in a similar situation, although not as serious as yours, but a pretty good betrayal none the less. Forgiveness has been hard and a long time coming. Stand your ground, Ellie. She is YOUR daughter and no one else has a right to go behind your back. And you are right to make her step up to the plate where your needs are concerned, I don't care how high-maintenance you are. You are her mother, have been a good mother to her, and she needs to give you the care, love, and attention you need for as long as you need. I wish you the best, Ellie, but from reading your blogs, I know you don't need anyone to fight your battles for you. You are as tough as they come. You and truly admired. And yes, your Fat Fuck post was my favorite. Taught me a lot about how to get tough! I mean no disrespect to your daughter in my words....she looks and sounds like a beautiful human being. But what's right is right and you are RIGHT.

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  73. Dearest Ellie,
    I love that you gave Gracie a good arse kicking......might be an Aussie term. Kids need it sometimes and really wtf are your family and friends doing getting involved in your parenting. Hope you gave them an arse kicking too. Love all is well again with your daughter and she's supporting you with your shop. You are such a gifted lady and I'm sure through osmosis and much conversation Gracie will be just as amazing. Love you beautiful Ellie. Your blogs always add light to my day. Much love,Katrina xxx

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  74. Lust and an In and out burger- the apple didn't fall far from the tree. Grace not only looks like you but she has some of your best skills. How great that she will carry on the shop. Great job Mothering and that is the greatest accomplishment and legacy for any of us. Bravo.

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  75. You asked if we are disappointed when we asked how you are doing. Please know your words never disappoint, just make us (me, for one) so sad for what you have endured, and still do. I love every word you put into your blog, little did I know how difficult that has really been for you. I know nobody, NOBODY, that could fight as you have. If I could put love and hugs in a box,to last you forever and ever, into eternity, I would be sending it to you. But not being possible, I am sending love and hugs from my heart to your heart, in prayers...

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  76. I have been following for a long time but never writen. I check your instrgram page every day and think of you often. I tell my partner about you and how you make me appreciate and my boys everyday. Everyday I hold my boys and think of you and how lucky I am to just hold them. I have learned so much from you and you have impacked my life forever. I know when my boys are older and complaining about the small things in life I will tell them your story. You will forever be apart of my journey and life and that of my children. I love you and hold you close to my heart xxx

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  77. I wish you were my I- can- hug- you -now friend..You and your writing touch me, my heart. I laugh. I cry. I wish you continued strength. You haves much to share.Thank you.

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  78. You are an amazing woman..I can't believe all that has gone on in this past month, but so glad you are here with purpose. I hope you realize that not only are you here for Grace, but for all of us who follow you. Having just read all the previous comments, you clearly have made your mark in this world. Keep it coming! Much love sending your way!

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  79. A mind is a terrible thing to waste - rock on! oxo

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  80. You are my hero, on the real. I too am surrounded by "les stupides" when it comes to my kids. It should not be illegal to kill them (think removing genetic weeds), but alas - it is. My favorite is when I hear how much they "love" them when they left me in pain and desperately ill to raise them. So much trash, so little landfill space. Girl, you know we get it. You are tougher than nails - tougher than Superman. You get the job done, girl.

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  81. Wow - never underestimate the plotting skills of a teenager with a motive. In my experience, girls are more sneaky. Well, at least that mess is over and you and Gracie are back on track - that's all that matters. Your post captured the situation with your signature writing style - honest and humorous. Keep on keepin' on - we love you. Hugs.

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  82. Oh my goodness, I love you so much - there are times when I think that I could not love you more and then - poof! - it is like NASA discovering those 1724 planets (or however many they are) beyond the solar system and my love expands. A little workout for my heart. I have learned so much from you and keep doing so. Nope, your job is not quite done yet - and I know very well you will be working overtime when you start your new job in the beyond!

    I hope this is ok that I share this - but when I called Ellie last week, I am assuming it was Grace who picked up because when I faultered asking for Ellie she immediately replied, "this is." Oh my gosh, I have thought about that quite a few times, it makes me smile. So just to say...these two are thick as thieves...thieves that are about to seriously plunder the French Antique world...

    Sending so much Love and Strength to you, David and Grace, always,
    H bis

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  83. Oh, this is a great one!! Didn't want to do her homework and makes it all the way to California!! I thought that my "perfect" daughter had won first place (made it to Hawaii and the "surfer" dude).......Well, Gracie--you certainly made Hawaii sound like next door. And you, Ellie, GO MOM!! Because of your determination, I added a new acupuncturist to the list of healers that I'm sure will start making the healing thing work. I love you, Ellie, GO GIRL. xoxo & Prayers, Mary

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  84. Hahaha! Ellie, you just crack me up girl! LOVE this post. Gracie will eventually realize that no matter how old you get, you can fool a lot of people but you can't fool your Mama. Stay on that ass! She expects it. Also, I honestly believe you're going to find what works for you for the ALS. Is there a Master Herbalist in your area that could be consulted? Blessings and love always to you, my friend.

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  85. You go get it, girl!!!!!!! Show them who is the boss. People can be so disgusting and stupid. I wish it were harder to believe that these morons would send her to LA now. Perfect timing. Why not send her to Mars? Or the nearest galaxy? I mean - you've just got oodles of time, right? Having ALS and being surrounded by stupid people is kind of like of having two chronic, terminal illnesses. They both can kill you - it is just a race to see which can do it faster. Here is the plan. Stay around as long as you can and torture these idiots as much as you can. (Not your daughter of course - she is still a child.) I think it was Confucius who said "By any means necessary." Love love love, Chronically ill mom also surrounded by idiots - it's a fun club I wish everybody could join.

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  86. Hells Bells! I'm not disappointed, I'm just glad you're still breathing. ALS
    My sister had it, when she could no longer drink Bourbon she quit! Love you -sending money!!

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  87. Ellie - You're a better mother encumbered by your "high maintenance" challenges that some of us are flying by the seat of our pants healthy! Gracie will remember this faux pas when she has a strong-willed daughter of her own who doesn't want to do her homework. That's pretty much a given.
    I'm sending prayers from NC to Paris that your days are comfortable, your loved ones are near, and that the eye tracking computer software becomes your bitch. You're an amazing woman!

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  88. Keep up the good fight! You are marvelously fierce!!!!!

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  89. GRACIE was SPOTTED on a MONTECITO INSTAGRAM..........to the SCREAMS of others "WHAT IS SHE DOING HERE!!!!"
    I kinda BACKED up GRACIE.......thinking she went back with a relative..........NEEDED A BREAK!!!
    What a FOOL I WAS...............YOU are RIGHT it was ALL ABOUT THAT PAPER and FINALS..............
    YOU ARE ON TASK MOTHER DIVINE...............LOOK what is HAPPENING........interest in YOUR SHOP.......Opening THE CARDS.............somethings ARE SINKING IN!!!IT just takes TIME sometimes..............XOXOX
    PS.I would imagine HE just wanted to REMEMBER YOU.......there was NO REASON...........Your CAREGIVER most likely is in AWE of YOU!HIS TYPING IS BRILLIANT!!!!!!!!Don't be MAD.
    LOVE YOU,
    XOXOXO

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  90. Funny how things work out.....I have come to believe that we are where we are supposed to be ( even if we REALLY don't want to be there). Sometimes you just have to wonder. I do. My hand is on your shoulder.

    Warmly, Kathleen

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  91. Ellie, I'm new to your blog, but have loved reading every word. The thing that strikes me about Gracie is how equipped (good, bad or otherwise) she is. This girl knows how to make things happen. The fact that she could rally your loyal supporters to help her just shows the amount she can accomplish. This, channeled, is a good thing. But look at you rallying up and letting her clearly see that a Mother's love isn't defeated by devasting disease or anything else. You go girl. You are inspiring all of us. What possible excuse can we have next to you?? I am amazed and in awe. Keep going Ellie and thank you for such honesty and humor in insurmountable circumstances. Also I love seeing the pics of Mr. Handsome.
    Only good on you, Janie

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  92. Oh Ellie - it's SO GOOD TO HEAR YOUR VOICE AGAIN!!!!!! From whatever source it is now produced, it's still YOU and you have more vigor, vitality and LIFE in approaching death than most everybody on this planet has in their entire healthy lifetimes. I couldn't be happier to hear that you'll be around a bit longer - you're just too good to go. Not ready to say goodby.......Carry on!!!

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  93. Ellie, you ARE ..."a river unto your people"..

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  94. Once again Ellie, you make me cry. You make me laugh. Life lessoned learned: Be more like Ellie and stop sniveling, take one challenge at a time because there will always be challenges (but not nearly the magnitude of Ellie's) If she can do it you can do it. And always, always, always make love the number one reason for living. I love you Ellie. Susan NYC

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  95. Thanks for continuously letting us into your world. Good Lord, as if it wasn't enough to have ALS, you were also "gifted" with Betrayal by all and the most imperfect moment for your gorgeous girl to ride away far from you into the sunset. Of course, her timing is spot on. What better way to know that you are both in sync eh! Your words of wisdom always remain with me. I know that miracles are few and far between, but Why not for you. Den Xxx

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    1. Keep thinking about this but forget to mention it. You probably have your people onto it, but your book, your blog and you should be made into a film. The rights surely should be worth a lot. Den xxx

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  96. For sure everybody learned one good lesson...'never, never go behind Ellis's back.' I believe you, Ellie, are stronger than everybody combined. That said, I can also see that Gracie might be feeling some stress. She wanted to run away to LA and so she plotted a plan and got to LA.
    I'm glad you and Gracie have sorted things out and agree there will be no more secret escape plans! My thoughts are with you - susan

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  97. YUP, boy are they clever these kids.....very clever, YOU GO GIRL...lay it down...they are master manipulators...and it is true, only a MOM knows the BS when she sees it, MOM's alone have this sixth intuitive sense and can put it all together faster than anybody....BRAVO for you...and once again, you forge me ahead to keep fighting out here....working hard at it.....doing all I can not to think too much, worry too much, and cursing = not offensive to me, expresses things better....polyanna's can go back to where they came from....ha ha ha.....much Love to YOU! hope you finally got my package, and HILARIOUS Grace runs to get the mail, SEE MOM!!!! there you go, justice...Mom's get it and always will.....XOXO.

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  98. http://www.lionsroar.com/ask-the-teachers-45/

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  99. hot hot French guys, send um over to the USA, we need them over here, badly.....!!!

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  100. Indomitable Ellie! So strong and capable. Yay for your beloved child now safely by your side, still tutored by her mother, the pro. Yay for eye tracking computer software and your shop reopened. May all this bring you added strength.

    As you face the daily insanity, inanity, and idiocies that will inevitably disturb your equilibrium, your maternal super powers will prevail and you will live for Gracie. Your recounting of this excruciating saga disturbed some long forgotten memories of my own and I feeeeeel for you. But remember, the prefrontal cortex is not fully formed until age 25!

    XOXOXO,

    Joanna from Baltimore

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  101. Ellie, over the last couple of months, every time I see "Have Some Decorum" in my e-mail, I open the post with bated breath. Enjoyed your guest bloggers, but they're not YOU in all your "Fuck-this, Fuck that, Fuck everything and everybody" grandeur. You sound like you're back from the edge with a renewed sense of purpose. I so hope that's true...easy, right now, for me to say. Nevertheless, I so want you to be back (as I know all of your other "imaginary friends," want you to be back) to totally beat your fuckin' ALS into submission to your strong will. I want you to be the female Stephen Hawkings defying the illness,steadily moving forward toward old age, remaining Gracie's "pain-in-the-ass" mother until she has a child of her own and, as a payback for her recent recalcitrant behavior, you'll still be hangin' in there, yet now siding with your grandchild just because that's where grandparents find themselves; strict parents suddenly becoming grandparents who'd allow their grandchild to swing off the chandeliers if that's what makes him/her/them happy. So happy am I to read this bitchy, complaining, WONDERFUL post from YOU, Ellie!!!

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  102. I have been wondering and worrying who it was that had betrayed you, now I know. So sad that those so close to you could get it so wrong, I guess the best that can be said in their defence is that they thought they were doing 'the right thing'. Although having said that, it has really motivated you into lion mode which to all of us is a huge bonus as we still get to hear from you. I cannot imagine what it must be like for you Ellie but it just makes me so sad to try. Thinking of you and praying for you.
    Cindy F
    xx

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  103. Dear Ellie, thank you. I love how you write and share everything in your life. I am learning so much from you. About life and how to be authentic and real. Thank you for that. I think about you often, grabbing to life despite all its pain and hardship as you deal with a devastating illness in the name of Grace. That's the purest love there is - a mother's love. Your body may not be what you want it to be but your spirit is strong and true to who you are which is a wonder in itself.
    I love all your posts but I fully enjoyed your answer to Fat Fuck. Of course you are not a snob, you love beautiful things and like to surround yourself with them. That is certainly not being a snob. It's being appreciative of the many beautiful things life has to offer and having the eye of an artist to recognize them. What a special husband you have, it is very touching how you write about how he behaves towards you. A real gem. And Grace is learning every day and needs strong and uncompromising teachers but most importantly, her mother sees through anything she may want to pull off and luckily is there to watch over her. I would have been furious as well of having the misguided plan of leaving to LA being concocted behind my back.
    Lots of love to you, you are truly awesome!
    Alexis

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  104. Thank you for this post fierce and beautiful Ellie. I can not imagine how much just dictating this takes from you physically and emotionally. I treasure every post from you. I'm thankful Gracie is back with you, as she should be. Much love to you.
    Sherry (Toronto)

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  105. Irreverent or not, I kind of love that your girl refuses to treat you with kid gloves in what you thought was your darkest hour. The Apple does not fall far from the tree, and apparently, neither does your rebellious nature and wit. Get blinking, my love. We need some more words.

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  106. Eurovision, and the winner is:
    https://youtu.be/iExW72v0BSw
    MUSIC....I know you are listening to music in those fantastic earphones you told me about! They are fantastic!
    XO

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  107. Dear,in alphabetical order, David Ellie Gracie.
    "Automnomy is the key to life. It truly is"
    You bet Ellie.
    Just ask my mother.
    95.
    No not ALS.
    Symptoms the same,though.
    Your'e not "a conventional mother".
    I'm not a conventional daughter.
    Guess we're trying hard to be human beings.In difficult times.
    God bless all of you.
    /leso in sweden

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  108. I raised two children, and oh do I know that girl-gone-ballistic woe. You wrangled it, though - good for you. If you feel like it, visit Amandas Angels on Facebook. Amanda Bernier is battling ALS and is at the same stage as you - now using eye software to communicate. She also said Fuck THis to just laying there, and has started a new venture - she's amazing. Had her baby while losing her physical being - has yet to actually hold her own baby, now two years old. But.. she's determined, because she wants to be there for her. Great to hear from you, fucks and all. You just keep trucking...

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  109. Ellie, Ellie, Ellie, you are one in a million!!!

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  110. Thank you, thank you, thank you-- your post is wonderful and I am so happy to read about what is going on with you. I hate secrets and can't believe that your family thought keeping anything from you was a good idea! I'm sure they were coming from a loving place but please! Totally ridiculous. So glad you have the spirit to deal with it. Sending positive thoughts and much love.

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  111. God damn kids. Get off my lawn!!!! LOL loved this post. And yes, I survived my idiot children.

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  112. As a teacher for over 30 years, you are, by far, the best example of what parenting should be. Many can learn from you, don't be your kid's friend, be their parent. If they tell you they hate you, you are doing it right! Keep on fighting Ellie!!!

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  113. You are fierce indeed, but it's a tribute to you for having raised such an independent and free-spirited daughter who could manipulate so many when she wanted to. Grace's mistake was underestimating her amazing mother who's still one step ahead of her. :) Bravo for being the indomitable spirit you are, and for continuing to be the BEST example of parenting out there. If only there were many more like you, just imagine our world and our young people. Thank you for bringing smiles to so many, and for being you, so very loudly. I love your spirit, and so does God. Blessings on you...oh, I did check out the hot French guy. Ooh la la!!!!

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  114. Ellie, I didn't think my respect for you could grow any stronger, but it is in the stratosphere since reading this post! God bless you for continuing to mother like a mother should. Grace is truly blessed to have you and David. You are so right....God has lots more for you to do while on this Earth!!! Thank you so much for sharing with us!

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  115. Ellie you are Amazing! Thank you for sharing your story. May god bless you!

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  116. I fucking love your honesty!!! Life is really ugly. We sugarcoat everything and it's bullshit. I'm so over people pretending like everything is ok when it's not. I picture their homes engulfed in flames while they're walking around to their guests asking, "Y'all want me to put some coffee on?". You, my friend, would say, "Hey, get the fuck outta here. This bitch is about to burn to the ground." Thank you thank you thank you for showing people the ugly side of life.

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  117. You make me laugh a lot ! You are funny and extremely inspiring Ellie

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  118. Reading this post I literally laughed out loud..Ellie you don't sound crazy to me ...you sound like a concerned and involved parent who loves her child more than life itself...if only more parents cared this much , this world would be so much nicer. I was brought up by a mother who cared like you do and it has made me a civilised, caring, invested and compassionate human being and even though I HATED her at times, I look back now and thank God that she was who she was ....trust me...Grace will feel exactly the same way when she's older.
    I have not been reading your posts lately so I am trying to catch up....I feel your strength and resolve coming through your words and I think you are incredible! Honest and feisty and incredible.

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