It’s 10:45 on Election night, here at UCSF. I’ve just laid down on the chair/bed and will now attempt to get some sleep. This will be virtually impossible as there are beeps and fans and suctioning sounds happening all around Ella’s room. I put Enya on the Ipod for Ella, I hope that helps her, for she has to listen to all these terrible sounds 24/7 and I get to switch with Alycia and go home every other day.
Ella is crying right now, her eyes half open, the sedative affects of the anti-seizure medications are taking hold on her. She is being dragged off into that awful world of hazy images and distorted sounds; the world she visits for hours, every 12 hours and has been now for almost two months.
How can we tell if Ella is in a coma, if she’s permanently brain-damaged, or if she’s just on the cusp of waking up, when she’s on all of these sedatives? Maybe she is just about to reach out her hand and say “daddy” but the drugs drag her back into the fog and darkness.
I’m wiping away her tears and telling her not to be scared, not to be sad, that she is doing great, her body is just healing itself, she’s in a hospital where everyone is taking care of her and that mommy and daddy are right here with her all the time. I can only hope that my words of comfort are making their way in through the sedative fog and that she is hearing them clearly and that my voice is easing her pain. But as another tear wells up in her lifeless eyes, just as I wipe one away, I fear she’s not hearing me and she’s trapped in the darkness of her coma, scared, confused and in pain.
It’s my worst fear, even more so than losing her. That she would be trapped inside her head, her brain injured beyond the ability to heal itself, and she remains there for untold days and weeks and months. Tortured by the darkness.
A stranger sent me a message, apparently had been reading the blog and didn’t like that I was airing family drama. This stranger wrote me and said that they felt sorry that Ella would have to wake up to such horrible parents.
Obviously this person is sick, and I tried so hard to just feel pity for them and move on. But I am at a weak point in my life right now, and whereas before Ella’s illness I would have laughed a comment like that away, this one cut to my core.
Does this person have any idea what it feels like to watch your only child, suffer in a coma for almost three months while cancer eats away at her brain? Have they any idea what it’s like to turn over every 30 minutes to check your daughters breathing monitor and heart rate and oxygen saturation, to make sure it’s ok, while you’re supposed to be sleeping as it is 2am?
Has this person ever done these things for weeks or months?
No, they haven’t.
There are so many amazing people who have helped our family with love, compassion, spiritual support, financial support, understanding. So many incredible people who have read my blogs and not judged me, because they know I’m expressing experiences they have never had to go through, and have no concept of what it must feel like. So I get the benefit of the doubt when I post blogs about my ex-mother-in-law and doctors misdiagnosing things.
And what’s sad is that even though 99.9 percent of the comments we receive are in support of this open and honest expression, praise me for being real and not holding back my feelings, it’s the one asshole who affects me the most.
And they wouldn’t be able to do that if I wasn’t so weak from watching my comatose daughter crying. They wouldn’t have any power over me if Ella was up and talking, but instead bleeding from the g-tube in her stomach that feeds her pedi-sure with fiber directly through that bloody hole. I wouldn’t let a sad and sick person have any control over my emotions, if those emotions weren’t already in tatters, shredded by 3 months of looking down at my little girl laying in a hospital bed that is constantly inflating and deflating, so Ella doesn’t get bedsores all over her body, like the two open sores on her chin and chest from 13 hours of brain surgery, where a rare cancer was removed from her brain stem.
The stranger left only a terrible and hurtful message and of course a return email address.
Do what you will Ella supporters, I’m sure you’ll have some ideas.
spayed@sonic.net
Thank you for the update. I’m so happy that you rejoice in her eyes being open as I can only imagine I would too! Prayers are still being lifted up. Lots of love to Ella and your whole family!
No Ella is not fully awake, she is in a semi-conscious state. When we say her eyes are open, we don’t mean she is moving her eyes around tracking things. She is just staring off. The doctors are weening her off of her anti-seizure medications which are sedatives that really snow her. We don’t have a good grasp of her neurological condition because these drugs are masking it. In about two months once all of the drugs are out of her system, they can reassess her condition and give us a more definitive answer as to how much she will recover. Some people never recover past this semi-conscious state, whereas it also can be the final stage of her coming out of the coma. We just don’t know, no one does. But seeing her with her eyes open does my heart good, and it gives us real hope that she will be back to us soon. I can’t wait to start buying her presents, man that will be fun!! If there is a girl in this world that deserves a ton of presents it is surely is Ella Velouria Stewart.
Wait for me! I’m so confused. Is Ella awake? Can you give us more info on her status? Ignore the jack-asses and tell me more about Ella! Please???? Deb said that Ella opened her eyes for story time. What does that mean??? I’m sorry I’m so behind.
Wow, I dont even know what to say other than incredible….you are an incredible woman to be able to go through something like this an even be able to talk. I cried reading this story and I’ve never even met you or your beautiful daughter. The power of prayer is amazing and I will keep you and your family in my prayers….because miracles do happen
I hope that you can find a little bit of comfort in knowing that ella’s story is touching so many lives and so many people love her and yet may not even know her. I’m truly sorry that anyone would think its okay to feel any different, and when people make comments like that, all I can say is think of ella’s precious face smiling at you … You do everything in life for her…smile because when she does wake up, the first thing she is going to do is smile at you 
Like so many people on this blog have said, keep on expressing yourself! Don’t even waste your time on arrogant, heartless, inimical assholes. Unfortunately, as you already know, this world is full of them. Stay strong. I can’t even begin to imagine what you are going through. It’s something all of us parents try to not think about and hope that it never happens to us. I know I keep telling you this, but I’m here for you. If Deb is with Ella and you are in Sebastopol and need someone to get you through the night, CALL ME. You can call me anytime, day or night. Of course I can’t relate, but I can always listen. I love you guys.
That person has some problem that is not you and has nothing to do with you and its sad and offensive (and probably a sign of mental illness, seriously) that they felt the need to put any more stress on you, when they should be looking into themselves for why they would do such a thing.
My mom was on a ventilator and I slept in her room at the ICU for about two months before she could come home (she had a completely different health issue), and its incredibly isolating. I blogged about it on facebook at the time because it was a necessary way to reach out, feel community and support when physically I couldn’t be around friends because I needed to be there to support and advocate for her. And its traumatizing, the sounds, the suctioning, constantly living on the edge not knowing whats next except that the situation is critical, constantly critical. And as advanced as medicine is, its still very fallible plastic tubes that keep things going; there is a real irony to this. Its necessary to write about it all and process it with others. I’m not sure I would have had much energy to deal with haters, but somehow it was there when it came to advocating for better care. Save your energy for that; ignore the haters, they just have no idea and have issues that hide their better humanity.
And If it helps I think she can probably hear you at least on a subconscious level.
we support you. you do what you need to do, write what you need to write, say what you need to say, feel what you need to feel. don’t sugar coat. whatever you need to make it through this horrible time. this is your outlet. we are grateful that you are willing to share and keep us updated on Ella. you are brave and a wonderful father. We care. We understand. Ella will understand. Love, All of Ella’s friends at Live Oak
Please don’t stop being honest Glen. Don’t stop making all of us come to tears with your heartbreaking words. This is reality, and it hurts more than it should. I think to ask you to hold yourself back is a disservice to Ella. She loves you more than anything for being who you are. I can’t imagine the toll 3 months of not being able to speak to Ella, to hear her say your name, would be beyond maddening. Please continue to use this blog as your outlet and know that you have people who truly care about you and Ella. When Ella does wake up, she will realize she has the most supportive Father, Mother, and big red
Her love for you Glen is what is keeping her going, so don’t let that person allow you to falter for even one minute! I love you and Ella and think of you all everyday. The person who wrote that email to you doesn’t know what love is; to truly care about someone, and to watch them wither away. There are those of us who have had to watch that, and we have a glimmer of the pain you suffer, and will never blame you for it or judge you because of it. Smash walls, break things, punch people in the face, whatever! I love you and Ella relentlessly! Nica
Dear Glen, My heartaches for you at this time of your life. Unfortunately, our world as we see it, is full of ASS-HOLES who have no clue at what it means to be nice. They know nothing but evil, and evil lurks within their sad, sad souls.
If there’s anyway for you to avoid reading such garbage, then do so. Don’t allow yourself to be drawn into their insensitive, low life approach, and instead, just delete it immediately. They feed off of their own negative energy, and when they succeed at injecting the vunerable with their nastiness, they gain that much more negative energy.
Last but not least, picture this person(s) as an ant, and just squish them out of their misery! Ants are worthless and so are these nasty, mean people.
Your’s Truly,
Sara
I think I speak for all the parents reading this that there is no way we can even imagine the pain you and your family are in. Just thinking about my child in Ella’s place is almost too much to bear. You have to live it every day. I would like to see one person who can endure that with complete grace and ease. We have all developed a caring for Ella through your blog and that is because you have been so open with your feelings and emotions. Thank you for that.
Even when you are twisted in your anguish your wit and wryness make me smile.
The first words Charlotte spoke when she woke from a “waking coma” (sedative induced) were, “are you still my mommy?” Whatever Ella is experiencing now is profound and is changing her. She is going to carry forward in her life an insight and experience that will, with your inspired guidance, help her change the world. She is already changing it. You and she are changing all of us.
Anyone who gives you grief for expressing your anger or frustration now is really coming from a dangerously ignorant place. You are in the thick of it. If you are an old man and still bitching about something your ex-mom-in-law said once upon a time, then yah, we might tell you to shut up, but right now please feel safe to process. Funny how those asses can cut right into our soft spots? You are an amazing dad. Ella is blessed with an entire crew of attentive parents! Anyone who cannot forgive you some angry sentiments right now should keep quiet and back off. Like they are so perfect! Puh-shaw as if.