Friday, March 30, 2007
My friend Aaron's girlfriend Kelli started up a website where she's selling handcrafted goods--ALL of the proceeds go to help pay for Uma's medical bills, etc. Very, very cool. So if you're feeling creative and you want to make something to sell for Uma, go HERE to find out how you can donate your handcrafted items. Or if you want to do some shopping and buy some very cool handcrafted clothes, etc., made with love for Uma, go HERE to do some shopping.
Also, I started up a Flickr account (at Communicatrix's awesome suggestion) to keep track of all of the Uma photos I've been posting on the blogs. The web address is: http://www.flickr.com/photos/theumafund/
Photos are divided up into four albums: hospital photos, Vandalism photos, Get Well Card photos, and random Uma photos. If you have any photos that you'd like me to add to any of the albums, send 'em my way and I'll add 'em.
Thursday, March 29, 2007
I spent several hours at the hospital on Wednesday, mostly just sitting with Uma while she tried to sleep. She was exhausted from not having slept much the previous two nights because of her cough, and it had been a busy day of therapy. And it was very difficult for her to rest because she was still coughing. We must pray for that cough to be healed so she can get the rest she needs and build strength for her therapy.
I just want to share a couple of impressions. First, a very special moment: she answered a question by looking at me and saying "Okay" in a very clear voice. I was so startled that I forgot John's rule about not making a big deal about such things, and I did act surprised and delighted to hear her voice. It was such a beautiful sound. Uma is, indeed, coming back, but yesterday I saw how very difficult this process is. Spending a few hours watching therapists and nurses come and go every 15 minutes or so made it clear that John and Uma are in a world where there is no peace and no quiet. At one point, when it seemed things were slowing down, John laid down with Uma to help her fall asleep. For about five minutes, it was amazingly quiet, though hospital sounds in the background never stop. But those few moments of quiet were very precious. Maybe this is why Uma cried when she heard the sound of rain on a meditation CD that I played for her while John was taking a break at Starbuck's. I tried to reassure her that she would hear the sound of rain again. She listened for about 10 minutes, then took off the headphones. She'd had enough. I love how clear she is about what she does and doesn't want.
Imagine living in this hospital universe 24 hours a day and trying to maintain any sense of privacy and dignity. Imagine a very private, dignified woman like Uma trying to accept that she has no choice in this, that she must submit to all of this care in order to get well--yet she must also find a way to maintain her sense of autonomy and dignity and self-will. Sometimes this very basic human need works against her in her therapy, yet she must assert herself--even if it comes out in a lack of cooperation--because that is what keeps her sense of self intact. She is so fortunate that John understands this so well and is such a strong advocate for her in every way. But John needs a lot of support, because he is not getting much rest either, and he must keep his strength up to be able to do what he is doing for Uma.
Leaving the hospital yesterday, I appreciated my ability to walk to my car, to watch the sun go down, to go home and eat the home-cooked dinner that was waiting for me, to do simple things for myself that I take for granted. It's not fair that I can do these things and Uma can't. But that's just the way it is, and I guess it doesn't help anyone to feel guilty about it. What we can all do is treasure our everyday lives more, wake up every day with gratitude for what we have--and keep praying for Uma to get it all back.
UPDATE FROM JOHN:
I've been spending the night at the rehab where there
is no internet so I didn't write yesterday. My day
goes like this - get to the hospital about 10 am,
observe all the therapies, make comments and
ask/answer questions, consult with the doctors, eat
somthing and then at about 4 all the activity stops.
Usually there is someone visiting so I see them and
answer their questions and talk for awhile. At about 7
Uma and I are alone and she is usually asleep. I lay
down next to her and nap or pray or look at her.
Sometimes she wakes up and we watch a dvd until she
falls back asleep. I talk to her sometimes, tell her I
love her, remind her that this is all temporary. Then
begins her 'sleeping' time. Colleen Kane brought a
nice cot by that folds up and fits in the closet so I
usualy sleep on that with my head at her feet so I can
look at her face and more easily hold her hand at
night. I'm just a little too big to sleep in the
hospital bed all night. I stay there until about 5 am
and then go home to sleep some more. Wake up about 9,
gather myself and go back.
For the last two nights she has had a very thick cough
that crops up about every twenty minutes. I ususally
use the suction machine about 10 times a night to keep
her as clear as possible. This has continued into the
day too and today they did a chest x-ray and began
more fluids and are restarting the cool mist and
respiratory therapy to try and break up the
congestion. It's really awful seeing her cough like
that all the time. Here we are, 60 days out from the
aneurysm STILL dealing with pulmonary problems. It
severely impacts her therapy because she just can't do
much on such low energy and little sleep. I ride the
doctors and they respond. They are moving just about
as fast as they can I think. I brought it to their
attention yesterday and today the new action begins.
Yesterday in ST the therapist was having a slow hard
time, as usual (not Uma's fault - I'm working on it).
She was being asked to match little cards which had
either pictures of household items or pictures of
animals on them. No response. She was asked to trace
her name on a piece of paper. Some response. She then,
with a laugh, picked up the pen and began writing a
word and what looked like drawing a picture of a face.
At the time neither I nor the ST could figure out what
she did. It hit me later that the word was "good" and
picture was a caricature of the therapist (a very
distinctive face). And all this with her left
hand......tiny little circles for eyes and a face and
mouth. Almost forgot to say, this is the only
therapist that talks to Uma like she is five years old
and always says, "Gooooooood Umaaaaaaaa!" in a real
sing-song voice. I stepped in and explained to her why
she is in the situation she's in - the damage etc. -
and that we need to rebuild her brain just like we
would rebuild a broken arm. I told her I would "count
the numbers out loud with her so you won't be alone
and won't be the only one here doing this silly
exercise". I followed, while pointing to the
corresponding number on the page, with "one..." and
she SAYS "two" .....we then proceed to start over and
she says very clearly, "one, two, three........eight"
with me, in order, no hesitation at all. Then we try
the animal/household item cards again and she finishes
the exercise very quickly and with not a little
At one point yesterday, while helping her in the
bathroom, she looked up at me and, even without her
speaking valve on, clearly said, "go away".....so I
hid behind a curtain and watched her shadow to make
sure she didn't fall off the toilet. And last night in
bed she began to make some sentences but stopped after
a few words - seeming to not know what the next word
was that she wanted.
Today, again while helping her in the bathroom, she
began to cry and said a couple of sentences that
contained some words in order but mostly non-sequitor
words. The context was unmistakeable - why am I not
able to do what I used to....or very similar to that.
In moments like that there is no end and no limit to
the love and comforst I have for her. Just as
unmistakeable to her in those moments is the knowlege
that she is not alone and never will be in these
trials and, for whatever it's worth, that I can feel
how hard it is for her, that it is temporary.
She is following commands better every day, making
transfers from bed to the wheelchair almost by herself
and, in fact, refusing help a lot of the time even
though she still needs it. She ate soup, potatos, and
milk today - no problem at all, and this while having
her tracheostomy completely blocked off. And at speech
therapy today she asked, in about a half-complete
sentence, "do you know why...." which was very clear
and then, "(something) don't..." and then "talk?".
The ST fumbled with a lengthy answer and soon lost Uma
again. I stepped in and told her very clearly what had
happened to her and what was happening to her and what
will happen to her. This helped a lot and we
continued. (gotta do something about that ST. Her
accent is so thick sometimes I can't even understand
her. If that isn't the definition of irony.....)
And today she got a bag of blood because she is
slightly anemic and they are going to be upping her
fluids to help with the urine and the cough and
sometime doing that can cause greater anemia. It's
interesting signing a consent form for blood. The
doctors have to tell you that there is about a one in
a million chance that she could get HIV or hepatitis
or that she could have an alergic reaction. And, along
with the blood, she gets tylenol and benadryl to ward
off the allergic reaction. So, now, she gets keppra
(antii-seizure), pepsid (anti-ulcer), heparin (blood
thinner), Detrol LA (and bladder spasm), tylenol
occasionally. Since they removed her PIC line on
Monday she had to have a separate IV installed in her
right hand. I put the mit on so she wouldn't see it
and pull it out with her left hand. And they are
watching and waiting for her heart rate to come
down.....we'll see what happens with that.
on and on and on and on and on.........the days and
nights just spill over each other like waves on a
beach - me, the bouy, chained to the bottom with
sometimes not enough length of chain.
It has come to my attention that the staff are
focusing on strengthening her left side to compensate
for the right side - rather than on restoring the
right side. They told me today that the discharge date
is April 17th from in-patient therapy. This is four
weeks. .........now I know much more what to expect.
I'm pushing so hard for work on the right side - they
resist - I push harder and they respond. But I realize
now that we will be doing this kind of thing for a
long time. Erik and I were brainstorming the other day
about what to do when she is discharged. Probably we
will augment any county arranged out-patient therapy
with something elsewhere or at home. It seem to me
that, the stronger she gets, the more work she can and
will want to do. This one hour a day for each therapy
is probably appropriate for her condition now but she
can do more later and we will provide that for her no
matter what it takes. Her personality and mind and
will and life are still in there and they are coming
OUT! We will honor this with every known and
still-as-yet-unknown opportunity for her to regain
everything she lost. I've never had to do this before
but I can't imagine anyone more qualified to get all
the help they need.
Meantime, for the prayful/thoughtful/visualize-ful,
she REALLY needs to sleep at night and REALLY needs to
be DONE with respiratory problems. Take a deep breath
and pray for her. If she can't sleep or breathe well
she's not truly getting the fullest therapeutic
experience here....and with just 3 weeks left this is
I know that I'll need help when she comes home. There
will be times when I can't take her or maybe can't
pick her up from out-patient therapy.
I plan to keep up this schedule 'till about the first
week of April. By then I really hope the staff and she
and I have the kind of relationship and patterns
established that I can work at home and spend some
time away from the hospital.
Keep her in mind, please. Before this facility, the
intrusive and acute side of medicine had a lot to do
with her recovery - but couldn't have done all that
was necessary without the prayers and thoughts of so
many hundreds of people. Now, we're a little bit more
on our own so-to-speak. It's kind of up to her, some
therpists, and our love to bring her back. Please
continue your love for her.
Feel free to email me anytime. When I'm down during
the day (and this happens each day) I like to get on
my cell phone and check emails.
All my love and respect to you all,
Tuesday, March 27, 2007
So I decided, okay, we need a new task today. But what should it be? And then I remembered something that Uma wrote on her MySpace page a while back. I don’t know why it popped into my head today—I haven’t read her MySpace “blog” in months—but this particular post just popped into my head.
The subject line of her post was: “perhaps some goals, grace and love....”
And then the body of her post read as follows:
here's the story:
two fellas started this so that you could write yourself a letter to be delivered at a later date. we've all had to do them in high school and college. it's sorta cool to receive a letter from yourself about where you thought you'd be a year (two years? more?) later. FutureMe.org is based on the principle that memories are less accurate than emails. we strive for accuracy.
So, I was lying in bed, and I remembered this post, and I thought: that’s a great freaking idea. Let’s all send emails to Future Uma today! Because every time one of us sends an email to Future Uma it will be like we’re telling the universe: “Look, Universe, I believe that Uma’s going to continue to recover as beautifully as she’s been recovering and I believe that she is going to come out of this with all of her Uma-ness intact, and I know with all of my heart that one day Uma is going to be sitting down at her computer, reading emails. And I’m sending this email to that Future Uma. And for that Future Uma, thoughts of hospitals and rehab centers and brain aneurysms—that will all feel like a funny dream. It will all be something that Past Uma dealt with and kicked in the fucking ass. And it’ll be nice to remind Future Uma of all of the love that helped Past Uma get through that whole damned brain aneurysm ordeal. So that’s why I’m not sending an email to Present Uma’s dormant email box. That’s why I’m sending it to Future Uma, as a Statement of HOPE. To let her know that I knew she was going to get through this, that I had the faith that this was an email Future Uma would someday receive.”
So that’s the task I am humbly asking you to complete today. Write an email to Future Uma at www.futureme.org, and have them send it to: firstname.lastname@example.org on whichever future date you desire. (Remember, if you want to make it a birthday wish, her birthday is September 20th—but pick whatever future date you want her to get your message on, whatever date you find significant.) Even if you don’t know Uma but have been following her progress, it would be great if you could put your own little statement of HOPE out there into the inter-ether.
Oh, and I almost forgot to tell you the freaking strange part. So…I went to “copy and paste” Uma’s post about the www.futureme.org website and just as I was about to close the internet explorer window, I glanced up and noticed the date that Uma had posted her MySpace message about www.futureme.org. She posted it on March 27th, 2006—exactly ONE YEAR AGO TODAY. And that’s gotta be more than just some random coincidence, right? I mean, that’s too weird to just be a coincidence. I dunno.
Anyway, send Future Uma an email! (and again: her email address is email@example.com)
(and feel free to repost this and ask others to send Future Uma an email!)
Monday, March 26, 2007
I have a feeling this blog post is going to be long. (Okay, I just finished writing the update and it IS long.) And it's okay if you feel like skimming it because I have a feeling that when Uma eventually reads it, she's gonna be like, "oh my god, erik, stop rambling" and she'll end up skimming it too. (Or, just read it when you have a lot of time.) (Like, print it out and read it the next time you have to go poop.) It's just that I haven't written up an update in a couple of days, which means I have a few days worth of anecdotes to share (Thursday through Sunday), and I'm assuming that'll add up to a long blog post. (Spoiler: it does.)
First of all, Uma's doing very good. She has a long road ahead of her and she seems to be aware of the long road ahead of her, so that's both tough and good. A few nights ago, before I left the hospital, I leaned in really close to her and I told her: "You know you're not going to go through this alone, right? There are so many people who are praying for you, so many people who are here for you, so many people who are going to help you get through this." She smiled and nodded. She knows.
Uma continues to show so many wonderful signs of Uma-ness and I believe that she is going to come out of this whole thing with her personality and essential character intact. (We must remain HOPEFUL of that throughout all of this.) That's the scariest thing about a brain trauma—not the fear that your loved one won't remember who YOU are, but the fear that your loved one won't remember who THEY are. I don't think that's something we need to be afraid of anymore. All of the other things that Uma may have lost…like reading, writing, walking, etc.—those are all things that she can get back, all of those thing can be relearned. And we're gonna help her relearn 'em. But her essential Uma-ness…and you know what I'm talking about when I say "Uma-ness"…that irreverent, snarky, loving Uma-ness…it's there.
On Thursday, when I arrived at the hospital, Colleen Wainwright was there with lunch for John (thank you so much, Colleen). Uma's speech therapist was there too—she fed Uma some apple sauce, which was the first time Uma had eaten anything since that one time they fed her apple sauce in New York. (She's going to get pretty damned sick of apple sauce pretty darned quickly, so hopefully they'll be able to move on to other foods soon.) The therapist dyed the apple sauce blue in case Uma has any trouble digesting it—if the apple sauce comes back up, they'll know it's the apple sauce because there ain't nothing in your body that's naturally blue. So that's what they're feeding Uma nowadays: blue applesauce. And ice chips too. Hey—it ain't chicken curry with lentils and spinach, but it's a start.
The speech therapist put a speaking valve over Uma's trach, giving her the opportunity to talk. The speaking valve is basically just a little cap that covers up the trach and blocks that air hole, so that the air comes up through her mouth. Uma usually coughs right after you put the speaking valve on, and it's an entirely different cough than the cough we've gotten used to hearing. Without the speaking valve, when she coughs, her cough sounds kind of hollow and rattly, like—you know those children's vacuum cleaner toys with the colorful balls in a plastic oval cup? And when you push the vacuum, all of the colorful balls rattle in the plastic cup??? Do you know that toy I'm talking about? Without the speaking valve, Uma's coughs sound kinda like that. But WITH the speaking valve, they sound like real, solid coughs, and you can totally hear Uma's voice underneath.
And that's hopeful, that's encouraging. It tells us that Uma's voice is there. But Uma still hasn't shown any signs of attempting to talk. The therapist will say things to her, like, (pointing at me) "Who is this? Is his name Steven?" Trying to get Uma to say, "no, it's Erik," or just "Erik," but if the therapist knew Uma she would know that this probably isn't the best tactic to take with her and instead of responding, Uma will look at the therapist, like, "do you think I'm an idiot?" I want her to use that frustration and just go ahead and call the therapist on it: "I'm not an idiot, I know his name and you do too, so let's stop playing this silly game." But Uma hasn't gone there yet.
The speech therapist also works with Uma on writing. On Thursday, she got out a dry-erase board and wrote "U-M-A" at the top of the board, then she put the pen in Uma's hand and guided Uma's hand through the motions of making the letters, and then she asked Uma to do it herself. Uma knows what she's being asked to do, but there seems to be some writing aphasia because she can't quite get the letters yet. "U" seems to be particularly difficult for her—she was getting the "M" really well and then she would continue to do the "M" and the therapist would tell her to start at the beginning again.
Then we moved on to numbers, and the therapist did the same exercise with "1-2-3-4-5," and there must be something about the M/3 shape because Uma got the "3" down and wanted to keep writing the "3," I think to show us that she could nail it, but the therapist told us not to let her skip ahead because she needs to get the entire series of numbers down, otherwise she could re-learn them out of order. So we would start back again at "1".
The thing we have to remember with these writing exercises is that Uma is using her left hand for them and she's freaking right handed. So not only does she have to re-learn how to write, but she has to do so with her non-dominant hand. And she's going to, because that's the kind of rockstar she is. But it's going to be doubly tough.
After the writing exercises, the therapist got out an Uno deck and laid out several cards. Then she would hand different numbered cards to Uma and she'd tell Uma to put the cards in the correct piles. And Uma did this correctly, without hesitation, every single time. So she definitely comprehends the images, and understands what she's being asked to do—it's replicating the images and writing them herself that's difficult.
So after the therapist left, we helped Uma practice writing her name some more, and she was having a really tough time of it, but after struggling for a while, she wrote her name almost perfectly twice. The "U" is still kind of difficult—her "U" has a tail on it right now, so it kind of looks more like a "y," but she's getting closer and closer. After we practiced writing her name for about twenty minutes, Uma got tired of writing and she held the marker up in the air and started taunting me with it. I swear to you, she had this devilish look in her eyes and she was looking at me like, "you are not going to get this pen from me," and then she moved the pen close to my face like she was going to write on my face and I said to her, "you wouldn't dare…" And then she defiantly wrote on my face and then laughed. And then I had a big red mark on my face for the rest of the day. It was a nice moment because Uma and I have a very playful relationship and she was settling right back into that playful groove with me.
After that, Uma was pretty tired and she took a nap. John went out to run a few errands and I stayed with Uma while she was sleeping. When she woke up, it was really quiet in the hospital and I decided to sing to her because I thought maybe that would be nice, except I forgot the part about how I'm a terrible singer, and I tried to sing a Regina Spektor song to her (that part of her song "Fidelity," where she sings "all my friends say / that of course it's / gonna get better / gonna get better / better, better / better, better / better, better, oooooo") and Regina Spektor songs are difficult to sing even if you're a great singer, so my terrible singing really wasn't as "nice and soothing" as I was hoping it might be, and then I stopped singing and apologized to Uma and told her, "I know you'd much rather it was John singing to you right now, wouldn't you?" And she smiled and gave me this look that was a complete, "yes." So I stopped singing.
So then I asked her if she wanted to make any phone calls, and I asked her if she wanted me to call my Aunt Jill, who she knows really well and loves, and Uma's face lit up and she nodded vigorously—so we called Jill, and I held the phone to Uma's ear while Jill and Jill's two kids, Steffani and Taylor, took turns talking to Uma. Steffani is 10 and Taylor is 7 and they both love Uma so much—they built an Uma shrine in their living room with photos and drawings, and every day they go light candles at the Uma shrine and talk to Uma and tell her things like: "you have to get better soon so we can have another meeting of the Boys Are Dumb club, or the Smart Girls Club." Anyway, these little girls have been so anxious to talk to Uma that when they finally had her on the phone, they kept pausing to let Uma respond to them, and Jill had to keep reminding them to keep talking because Uma can't talk back yet. I had a dream last night—a really vivid dream—where Uma started talking again. We were in the hospital, and she hadn't spoken yet, and we were all just sitting around, and then Uma just started speaking, as if she'd never not spoken. And I know that could happen—it's what happened with Bob Woodruff—and so I keep praying that Uma's speech will suddenly come back to her. Feel free to visualize and pray for that to happen.
Friday was another long day of therapy. Uma's therapy sessions are pretty intense—especially physical therapy because she's spent most of the last 50 days confined to a bed—and these sessions are exhausting too. But Uma makes great strides every day. John worked with Uma during her therapy sessions and I'm going to copy and paste his update from Friday for his perspective on how her therapy is going. I'll continue my update after JOHN'S EMAIL:
Each day Uma has an hour with an Occupational
Therapist, a Physical Therapist, and a Speech
Therapist. It may not seem like a lot of time but it
is very tiring for her. In so many ways the things she
is being asked to do are new for her. Her bedridden
state for the last 50 days has produced some serious
hurdles to her recovery. But she is trying and doing
Today Erik and I were brainstorming about post-rehab
facility rehab in the home and many other options so I
didn't see much of what Uma and the OT did. I did see
her practicing writing though, and I saw that the sink
in her room was wet with use. The OT is 'hopeful'
that Uma will meet some of the goals we discussed
before her discharge. I hope that turns into a more
confident opinion soon.
The ST seems a bit frustrated with Uma. The other day,
while Prakash and Nava were there she asked them to
speak to Uma in 'hindi' to help Uma begin to talk with
the 'speaking' valve on her tracheostomy. They
informed the ST that they don't speak hindi but speak
tamil and that Uma should work with English. Then the
ST asked if she should try Mandarin as Uma went to
high school in Taiwan and speaks that language. Today
the ST took Uma outside for a bit in, I guess, some
effort to get her to talk. Didn't work. So we went
back in and I watched, from a distance, (sometime I
can be a distraction) as the ST had Uma draw a line
between two out of three pictures on a page that were
the same. It's like Sesame St. I saw through the
office window the ST trying to help Uma with the pen
in her left hand and saw Uma yank her hand away from
the ST! She clearly wanted to do it on her own. I
can't think of anything that would indicate to me that
Uma is still in there! The ST expressed some more
frustration to me after the session and I told her
that Uma can be a VERY private person and that she is
the only person I know who can sit in a one on one
situation and not say a word to the other person. If
she doesn't like you or trust you, you are seriously
S.O.L. because if Uma doesn't want to do something,
you're not going to get her to do it. Let's hope this
stubborn-ness can turn around to help her.
With the PT it was a different story. We missed our
regular PT because Uma underwent a vascular test for
blood clots, which she passed. So we had a substitue
later in the day. Here is why you need to stay on top
of things: the sub started out by attempting to put a
brace on Uma's LEFT leg. I said, "Did you know that
the RIGHT side is the weak side?" So then she
switches. Ok, not the end of the world....good think I
was there. She has Uma practice getting out of the
wheelchair and into 'bed' again. We have to set the
brakes, get the foot-rests out of the way, get Uma to
slide forward in the wheelchair, LEAN forward and put
her left hand on the bed and half pull half push
herself up out of the wheelchair and onto the bed with
only a little help at the hips. Then she has to get on
her left side and, with her left leg, lift her right
leg up onto the bed, then roll over onto her back. She
did this with a little help and, upon returning to a
seated position on the bed, began to cry. She had the
speaking valve in her trach at the time so this was
the first I've heard of her voice since Jan. 31st in
the emergency room when she yelled, "I AM IN HELL!".
Her tears today and her cry back then were perfectly
clear utterances of her exact emotional and physical
experience. The look on her face today was so pure in
its frustration and sorrow and fear. This clarity of
expression made it so easy to comfort her. I hid her
face from the rest of the people in the PT gym, let
her cry on my shoulder, and told her, "....this is
just temporary Uma. We're just practicing right now,
this is going to change, you're going to walk again
but you were so hurt that we have to start here. It's
just the first day. I'm so proud of you. I want you to
be my wife and walk down the aisle for me so let's do
it again. Besides, once you walk out of this place you
never have to see these people again (smile from Uma)"
So the next time I helped her and it actually went
smoother. Her movements had more force to them, more
accuracy. Her sense of balance in heavily impaired but
not nearly as much as it was before the shunt
revision. We then moved out to the hallway and she
practiced standing up and holding onto the hand rail
along the wall. She was starting to get tired. You can
tell this because each time she would sit back down in
the wheelchair she would try to attach the seat belt!
We then practiced walking. She had a four-legged cane
in her left hand and a PT on her right side. She took
12 steps. The last few found her holding the back of
her neck in pain. So many muscles must be so tight for
The last adventure was to go to the bath room/shower
and practice getting onto the bench to take a shower.
Probably next week we'll be able to give her her first
real shower since Jan. 30th. ....back to bed and a hot
pack for her neck, a massage from me and some
And I've decided, based on cues from the staff, to
keep moving her right side, keep stretching her
muscles, practicing writing, gently trying to get her
to talk, even after hours of therapy.
They have discontinued feeding her with liquid foods
from the IV. Now they are just directly injecting food
and water and medicine into the P.E.G. This means
she's not 'hooked up' to anything. And THIS means that
I can crawl right next to her in her bed and we can
fall asleep together. And tonight, in that bed, I
finally went home again.
Honestly, I feel so afraid for anyone in a hospital
situaton who doesn't have their own pit-bull advocate
looking out for them. She could easily be dead right
now if certain questions weren't asked and certain
points weren't made and acted on. Her road to any
kind of meaningful function is so incredibly long and
she just won't be alone on that road. When medi-cal or
this facility run their course we will continue with
other resources if necessary. I believe in her mind
and in her spirit and I believe there is merit to the
idea that the world is better with her in it. Pray for
her spirit, that she would have the will and humility
to submit to this process and dig into it with all the
stubborn-ness she can.
Thanks for reading and responding to these emails. I
need to write them and it's good to know they're being
ME AGAIN: (and this really is an epic blog post, I apologize for writing up a little novella) After therapy on Friday, we tried to have some "fun." Which is slightly difficult in a hospital setting. We watched an episode of Sex and the City (the one where they judge a firemen stripping contest and Carrie meets the politician who will end up wanting to pee on her in the next episode) and that was nice and relaxing, and then we listened to the Buffy Musical soundtrack, which Uma definitely enjoyed. During Spike's song, Uma made what I interpreted to be a "rock on" face, and she was smiling during the Anya/Xander duet. If you aren't familiar with the Buffy musical, I'm sorry to go on and on about it (and you're really missing out), and one last thing: during "Walk Through the Fire," Uma and I were looking at each other for the whole song, she was very focused, listening, and I felt like she was lying there identifying with Buffy and it was pumping her up for the long road she has ahead of her.
This is probably all hopeful interpretation on my part, but the song is basically an anthem about how Buffy needs to be heroic and do the hardest thing she's ever done in her life, and Uma's in the same place—except instead of fighting "dancing demons," she's fighting her own body. We just need to keep supporting her and loving her (as Tara sings in the song: "what can't we face if we're together?") and she will walk through the fire and win this fucking battle. Okay, sorry I just geeked out on Buffy the Vampire Slayer like that, but Uma's a Buffy geek and she'll appreciate it.
The speech therapist told us to try to keep the speaking valve on her trach as much as possible—we can't just leave it on 24/7 because it requires slightly more effort for her to breathe with the valve on, and she gets tired and starts to fall asleep when she's wearing it—but the longer she wears it, the better: when she's able to wear the valve all day and all night without having any trouble breathing, that will mean she's ready to have the trach removed.
On Friday, she wore the speaking valve for two pretty long intervals and we would tell her that it was okay for her to try to talk if she wanted to, but again she didn't make any attempts at talking. I think I've already said this in this very long email, but for all of you still visualizing things for Uma, still praying for Uma, this would be a really good thing to focus on. I have a theory, and this is totally just my interpretation and I might be totally wrong—but I feel like Uma might be afraid to try to talk. Afraid because: what if she tries and she's not able to do it? She's so powerless in so many ways right now and withholding speech is really the only "power" she has. So I feel like she might be waiting, holding that power back for now, until she feels completely ready. A little anecdote: my family gets together a lot, and Uma's been coming to family gatherings for years. Whenever we would go to these gatherings separately, if she got there first, she would wait outside in her car until I got there. Even though everyone in the family loves her and embraces her as one of their own, it took Uma several years to feel comfortable enough to go inside ALONE and claim herself as part of the family. But this past year, she finally felt safe enough to do that. Anyway, I've been sitting in the hospital with Uma praying for her to try to talk again, and a part of me feels like she's sitting in the car outside with her voice, waiting to feel comfortable with it, waiting to try. And I ask all of you to PRAY and VISUALIZE and HOPE for her to stop waiting and for her to PUSH THAT VOICE OUT OF HER THROAT. Her voice is there, we've heard bits and pieces of it underneath coughing fits. So pray for her to let her voice be heard.
On that note, I encourage you to go out into the world today and use your own voice, use it for Uma. Be bold: ask your boss for that raise; tell that person who you've been secretly crushing on for years that you've been secretly crushing on them for years; stop being so stubborn and apologize first. Whatever. You've got a voice, so use it—and use it big. And while you're out there in the world using it, take a few moments to imagine Uma doing the same thing. That would be awesome. Thank you.
Okay, now here's JOHN'S UPDATE from SATURDAY:
uma did very well yesterday in many ways. she is
already beginning to get up from and back into her
bed and wheelchair with more ease and strength. on
friday she walked 12 steps. on saturday she walked
about 25 both using the railing on the wall and using
a really long pole in her left hand to both simulate a
cane and also to force her torso to work more.
In speech therapy she is doing well at some things.
when shown a piece of paper with three letters or
numbers on it where two are the same, she can circle
the two that are the same with increasing speed and
ease. really, yesterday was the first day she did this
and she made no mistakes and gained a dexterity with
the pen in her left hand by the end of the exercise
which included about 20 pages of images.
i've been told by the speech therapist that she will
have her tracheostomy in for at least two weeks. this
differs from what the doctor told me upon our first
meeting. the doctor is more aggressive than the ENT
apparently. this news is very disturbing to me but
their point is that she need to be able to go through
the weaning stages without difficulty breathing. they
have trained me to put the 'speaking valve' on and
off. this is nothing more than a one way valve which
allows air to pass into the trach. but not out of it,
forcing her to breathe out through her mouth or nose.
this type of breathing is more difficult physically
than simply breathing though the trach and so she
might tire more easily. and since she is not
electronically monitored for anything anymore, they
want to be very conservative with this.
my frustration with this is lessened somewhat by the
fact that she has not attempted to speak even WITH the
speaking valve on. we had an alternate speech
therapist yesterday (saturday) who was very good and
seemed to think that uma has apraxia - difficulty
planning the movements necessary for speech AND
aphasia which is a loss or impairment of the ability
to produce and/or comprehend language, due to brain
damage. while she is beginning to follow commands
much more readily in other aspects of her therapy, she
has yet to try to speak or vocalize in anyway.
i know i've said in other emails how great the rehab
place is, but there is so much to keep track of and to
push for. for instance - one therapist will mention
electrical stimulation for her right arm but not write
a request for it. how did i find out that you have to
write a request for it? because the alternate saturday
therapist told me....and SHE is going to do this for
us on monday. so, in my mind, i put two things
together - that we lost a few days without this
treatment of her right arm and that we will not be in
this facilities' in-patient program for more than 4 or
5 weeks. and this is just ONE item on a long, long
list of items that need to be addressed for her. i'll
say it again - i honestly don't know how anyone gets
better without some real help OUTSIDE of the medical
team that is working on them.
she and i are able to take naps together a few times a
day and we usually fall asleep together at night after
visiting hours while watching a dvd. these are the
moments that i live for. the non-verbal exchange
between us exists as it ever did, the level of
absolute comfort and ease between us remains intact.
she and i have a relationship that is very much
changed but that remains, at its core, the same - the
foundation of our relationship is intact but the
structure of it has changed. she receives comfort and
help from me and, i believe, will, in the future, be
able to reciprocate.
what i'm praying for now is (besides patience for me)
is for her mind and capacities to heal in such a way
that she feels as deep a sense of fulfillment in life
as she ever did - and that she'll be able to continue
to grow as an emotional, intellectual, and relational
here is a link to a site that some of you might find
interesting. it's some idea of what she has gone thru.
we are not in the clear yet. i don't know how else to
say it. there are as many things to be grateful for as
there are things to pray for right now. i'm not going
to forget about either. please pray and think of her
if you can manage it.
also - re: visiting. we're keeping the time of each
visit to about a half an hour with breaks in between
people. she tires easily and withdraws the longer
people stay and talk to her. it's not necessary to
continue to speak to her simply because you're
visiting - she probably can't really understand
everything we say to her right now anyway. intention
counts as much as words right now i think. please feel
free to call me for any details.
love and thanks
ME AGAIN: Okay, this email has already been WAY too long, but I'll have to wind it up soon because I took much better notes on Thursday and Friday than I did over the weekend. So I'll round this up with a few weekend highlights:
--Uma had many, many awesome visitors over the weekend—I hope I'm not forgetting anyone: Sissy, Colleen, Aida, Dan, Joe, Patt, Maria, Marvin, Roman, Michal, Emily, Norma & Dan, Wayne, Joe C., and of course, Marie. Marie just had the busiest workweek of her year, and she's now she's back on the other side of that busiest workweek, and I know Uma was so happy to have Marie back at her bedside. There were a lot of great visits over the weekend, and all of the excitement kind of tired Uma out, so we're going to work on getting a schedule together so we can spread the visits out throughout each day and make sure that Uma gets lots of rest throughout the day too.
--John brought his guitar to the rehab facility and he's been playing for Uma and it's the most beautiful thing. He's been playing some of his own songs, some Beatles tunes, some James Taylor, lots of good stuff. Listening to John play the guitar and sing is one of the most soothing sounds in the world. I wasn't there for this, but John and Marie were telling me that at one point yesterday, John was just improvising some music and then one of the nurses—a Filipino man named Alfred—came in to check Uma's vital signs and he started singing a church song, and John listened to the melody and followed along, and then after the nurse finished checking Uma's vitals, he turned to John and said: "You must like that song, you know it too!" But John was just playing what he heard the man singing.
--Okay, I'm going to wrap this email up (finally) with JOHN'S UPDATE from yesterday (which he sent out this morning) because his update has the most exciting highlight of the weekend (I'll give you a preview: Uma said her first word!)…LOVE to all of you.
we had a day off yesterday from all the therapy and
had many visitors. at one point there were 6 of her
friends in the room and she really enjoyed that. she
was laughing and smiling a lot, focusing on whoever
was loudest at the time! we keep those visits fairly
short because, while the joy is a great thing, the
activity is tiring for her and she still does not
speak and withdraws visually after a time. it's a
the first thing we did yesterday with a nurse named
margaret was to give uma a seated shower - her first
real bathing since jan. 30th. she really liked that
and did much of the work herself. we helped her dress
in her favorite edmonton oilers jersey and put her
back in bed - again, with her doing much of the work.
if one can read a sense of contentment on someone
else's face, i think i did that as soon as she got
settled in bed. she seemed very relieved. many of the
comments margaret made were about how much uma has
changed since the first time we were there, before the
shunt revision, or about how much of the work uma is
doing on her own.
there were some other milestones yesterday, too. in
addition to a shower in the bathroom, there is also a
sink and a toilet. yesterday we made use of the
shower, obviously, AND we made timely use of the
toilet which was precipitated by a facial and hand
gesture cue from uma. those of you who know her and
her pride know that i've already overstepped by bounds
in telling you this but this is a very big deal.
think of all the things you do several times a day
that you just don't really think about.....you just
sense a need or desire and you go. what we're slowly
getting past, i think, is her inability to do these
we are also alternating having the speaking valve in
her tracheostomy and not - depending on how tired she
is. after most of the people left yesterday and just
marie and wayne were there, and after we had taken her
out on the 3rd floor balcony to look outside (she
liked that a lot, too), she was looking a bit
uncomfortable so i whispered in her ear, "do you need
to go to the bathroom?" and she said (get that? she
SAID), "no". first word......."no". it was with
great effort that i did not make a big deal out of
this. no cheers, no tears, no hand clapping - my
thinking is that we are trying to establish normalcy.
she would normally talk - lets experience her talking
as the most normal thing in the world. it's weighty
enough already without a dance of congratulations. (i
did tell her how great it was that she did that - she
rolled her eyes)
the activity today is, to me, reassuring that many
things in her recovery will be just a matter of time
and hard work. no one who knows her could ever accuse
her of being lazy but this is different. prior to jan.
31st i'm sure she felt like her body was her own to do
with as she felt - whatever, whenever she wanted for
the most part. the relationship she had with her
body, her musculature, her nerves, her ability to
receive and give all kinds of intellectual and
emotional expression, her desire to act and her gift
to us of her theatrical work, her experiences and
plans for her work-life, her plans for her wedding,
and on and on - these things are all changed for her
now. in just four days of rehab she has spoken,
indicated, consistently moved the functioning parts of
her body with more control, and tolerated all pokings,
proddings, changings, etc. with great patience. i've
already seen it wearing on her and it will wear on her
more as time goes by. this will probably be offset, at
times, by the gains she'll make = good days and bad
days - good moments and bad ones. that's why,
yesterday, i asked for your thoughts for her spirit.
for those of us still on this road of prayer and
visualization and hikes and lunches, her spirit could
use help every day.
for me, if this level of activity and interaction is
all we ever gain back from the insult to her brain,
that would be ok. uma and i are already relating as
well non-verbally as we ever did. maybe i'm able to
claim that because i just don't believe that this is
the end of her recovery at all.
each day there are moments for me that are so
surprising in their clarity and meaning. last nigh i
was laying down next to her and she had fallen deeply
asleep. her right arm was completely relaxed and she
was breathing very steadily. i just looked at her face
- tracheostomy, shaved head, scars and all and
thought, 'i'm glad you're in my life. i'm so glad you
didn't die' and then i planned a little bit of what
i'm going to say at our wedding.
thank you all so much for all the prayers and thoughts
Thursday, March 22, 2007
Please come join us for a lovely evening of chanteuserie!!
Bootleg Presents: SnatchBar in The Bootleg Lobby
Uma Spring into Sn-action!
Saturday March 24, 2007 @ 9pm Snatchbar is the brainchild of several women/men who identify with snatchbearers to make delicious music and art for social change. Each month you are invited to the Bootleg lobby for stellar musical entertainment; a portion of the proceeds will be donated to a different cause each month.
March is the birth of Spring and the re-birth of Uma. We gather to drink and make music and make-out to help Uma Nithipalan and John Ballinger cover the costs of her surgeries and rehabilitation from a recent aneurism.
Doors open at 9…Music starts at 930 with: The Brothers Landau a Superb guitar and cello duo!!! This month, the sassy songstressness of… Elizabeth Guilliams, Laural Meade, Pamela Samuelson, Patrice Quinn ...and on the keys Mz. Brenda Varda!!!!
Cover is sliding scale donation $15 - $30
2220 Beverly Blvd, LA 90057
Wednesday, March 21, 2007
I visited Uma back at the rehab facility today, and it was wonderful to see her doing so much better after the shunt procedure. She seems to be a lot more comfortable, and that must be a huge relief for her. I spent some time reading entertainment magazines to her--well, mostly looking at the pictures--and a couple of times she took the magazine out of my hand and held it closer to get a better look. She seemed a bit tired--who wouldn't be after what she's been through the past few days--and almost fell asleep but then more visitors arrived, and she seemed to lose interest in a nap. First John's parents came in, and Uma gave Norma a lovely greeting--she not only smiled, but reached out her hand to greet her. Then Nancy, a friend from high school, arrived, and Uma gave her a beautiful smile, too.
Uma can't speak yet, but she says so much with her eyes. She doesn't seem to miss anything that is going on around her. But she does lose interest sometimes. It's hard to participate when you can't speak, so I think she has resigned herself to being an observer for the time being. I have a feeling that won't last long, because the rehab therapy is going to make demands on her and I believe she very much wants to meet those demands.
It is so amazing to watch Uma and John together. John draws her into his loving gaze and she just melts. They are so in love, and it is such a beautiful thing to see how Uma looks at him. Just look at this photo that I took today and you'll see what I mean. Love is going to pull her through this and bring her back to John and to the life she once knew. And that love is coming to her from more directions than she can imagine, with tremendous power to support her through the very difficult challenges ahead.
UPDATE: I just received John's update, here 'tis:
Today was a very good day in so many ways.......
Prakash and Nava and Sissy and my mom and dad, and
Bart DeLorenzo and Uma's friend from high school,
Nancy visited and, of course, Erik's mom Sherry
visited and, once again, brought me lunch - which
ended up being lunch and dinner.
I arrived at the facility at 10 am and they had Uma
out in the hallway on a wheelchair. They do that with
some patients thinking it will be stimulating for
them. They don't know Uma. I've rarely seen her look
that unhappy. I immediatlely hugged her (she did NOT
smile at me, as usual) and asked her if she would like
to go back to her room. She nodded (!). We took her
back and THEN she smiled at me. She doesn't like being
put on display like that - which is how she would,
most likely, interpret that - with the whole
DEAF, "HI UMA! HOW ARE YOU TODAY?!' from every nurse.
I know, I know, it is SO well-intentioned and probably
good for many, many people but, I'm telling you, not
for her. She is a very independant and proud person
and this may actually hinder her progress at times.
She may think she doesn't need to practice some
things, assuming she can just do them like before.
So we ended up changing rooms for reasons I don't know
but it's a private room which is nice for her I think.
The occupational therpist said she did "a LOT better
today than before" the revised shunt....I watched her
truly help a lot in dressing herself and she did very
well seated in the wheelchair and washing her face
with a washcloth and washing her hands with soap and
The speech therapist began testing her with a speaking
valve in her tracheostomy. She did not speak today and
may not for awhile. Think about having a large tube
down your own throat for over 40 days and nights and
then having someone ask you to speak. Good luck. She
also did better with the ST than before.
We ended the day wathing Sex and the City episodes on
my laptop. There is only one headphone output so she
listened. The last time we did this was the last time
we were at this facility and she was somewhat into it.
She didn't really respond that much to it but didn't
push it away either. This time she was really into it
and, as soon as the opening credits began, she smiled
and opened her eyes bigger. I asked her if this was ok
and she nodded a few times. I was able to sit right
next to her and put my face next to hers and hold her
hands and arms etc. It felt a lot like home.
There came a point when she began to cry. Nothing in
the dvd indicated a crying response so I stopped it
and took off her headphones. I asked her if she was
sad and she nodded. I didn't ask her what she was sad
about. Instead I went through a list of absolutely
everything I could possibly think of that she would be
able to do again with time - acting, reading, talking,
using her arm, going home to watch Sex and the City,
having me cook for her and bring her wine, having her
cook for me (this brought a smile) etc. ....didn't
take long before we were back at the dvd. Later when
the final crawl came she was squinting her eyes at the
screen and began to cry again. I may have put two and
two together here and asked her if she was sad - again
a nod- that you can't read? - nod. More
reassurance......another episode of Sex and the City.
The last two episodes she watched alone as I had
retired to the foot of the bed - my feet on a chair,
my body on my right side with my head at about her her
hips on a pillow with her left hand alternately
holding mine and stroking my hair. I slept well for
Tomorrow is another day but I feel better now. There
are going to be challenges and questions and the fear
of shunt problems (for the rest of our lives
together), but we literally are doing everything you
CAN do for her condition.
At this point I would ask you to pray for her spirit
to keep doing all the little, seemingly stupid,
exercises the therapists need her to do. When she
realizes what condition she's in and that these steps
will bring her back I believe she'll do extremely
well. She has great weakness and non-control on her
right side, especially her arm and hand. She tires
easily still. She has trouble with very basic things
but shows promise. It's going to be a very long road
for her but she has as much chance as anyone if she's
All my love and respect,
means her therapists can get all of her therapy back on track. Which
is huge, awesome news. Because for the last few days she was just
sitting there in the ICU, bored as all get out, waiting. And now that
she's got a perfect, functioning shunt that's going to facilitate a
whole lot of progress in her brain, we don't want her to have to wait
anymore—we want to take advantage of her new shunt and start getting
her better! So now that she's back at the rehab facility, that's the
Here's John's update from last night, and I'll post my update below John's.
Hi there everyone,
About an hour ago Uma was taken back to the wonderful
rehab facility. I was told early in the day that the
transfer would be today, but after waiting for about 9
hours and being told several different things, I
finally put both nursing stations at both facilities
together on the phone so they could finally figure out
who is suppposed to call the amulance.
I saw the ct scan today - i had to actually run and
chase down the doctor to get his attention but he
showed it to me - he actually voluteered to show it to
me. I saw a rounded black object in the middle/right
of Uma's head - her right ventricle - and right in the
middle of it was a short bright white strip - the
shunt. So then, I was looking at a shunt in a
ventricle which, I am agonizingly sorry to say, I have
not seen before. When looking back on this some might
say, "Well, in the grand scheme of things, you only
lost a couple of weeks due to the mal-placed original
shunt..." but it's different when you're there each
day all day and all night knowing that something isn't
right and knowing that there is so very little you can
do about it and knowing that this isn't her elbow -
she didn't sprain her ankel here, this is her
brain.....there's really no feeling quite like it and
I wouldn't recommend feeling it if you can possibly
On the other hand......her face is different now. I'm
almost afraind to say how much more clearly she looks
at you or at her environment. She cried twice today.
Because she can't talk yet, I don't know why she
cried. But she was looking at one of the wires
attached to her in the ICU, the pulse/ox that attaches
to her finger. She was studying it for a long time and
then she looked at me and just started crying. The
tears and her face told me she was afraid and sad. I,
of course, comforted her - telling her that everything
she was and wants to be will come to pass, that she
will use her right arm and leg again, that she would
come home again, that we would get married, that she
would go to work again, that she would act again, even
that she would take care of herself again, and that
today we would be going to a better place.
I can't imagine what it must be like for her but i
have a feeling we will know soon enough.
I was too tired to tell you last night what happened
yesterday. She kissed me.....no, I'm mean SHE kissed
ME....I didn't reach down and kiss HER. She lifted up
her head to me, held the back of my head with her left
hand and kissed me like a woman kisses a man. A very
intense and wordless (!) moment followed.....just eyes
and cheeks and hands and breath. Funny how you can't
hear a single ICU alarm going off in a moment like
that. My entire universe was her face, her eyes and
the tiny-ship-in-the-middle-of-the-sea feeling you get
when your emotional exchange reduces every distraction
to it's proper size. ....you float, safe because you
And.....today, while listenig to music, she began to
move her head and purse her lips in that "Uma -
getting-ready-to-dance" way. Any of you who've seen
this know what I'm talking about. It wasn't jus
tapping her foot in time to the tune. Nice.
So - I feel that I can't ask for much more than a
properly placed shunt and the behavior she's beeen
displaying and being out of a hospital. I feel that if
she remains medically safe, she will be
And, tonight, I will sleep.
And now I want to share some moments I had with Uma yesterday:
When I first arrived at the hospital in the afternoon, John had been
alone with Uma all day, so he left the room to take a nap, and I sat
with her alone for about an hour. When I sat on the edge of the bed, I
felt my glasses move ever-so-slightly down my nose and they were kind
of uncomfortable and without indicating anything—without pointing at
my glasses, without wrinkling my nose to shake my glasses—I asked Uma,
"can you push my glasses up?" And without missing a beat, she
immediately reached over and pushed them up the ridge of my nose.
Total comprehension, without a doubt. (I think this comprehension
sometimes comes and goes though—later in the afternoon, when John had
returned from his nap, I asked Uma to push my glasses up again, and
she wouldn't do it. I don't know what to make of that. Either she
didn't understand what I was asking, or she realized that I was trying
to show John that she understood what I was asking and she didn't want
to "perform" for me. Both seem equally possible. If her comprehension
does, indeed, waver like that, that's just something we're going to
have to work on with her during her rehab.)
Uma and I hung out for a while and at one point I asked her if she
wanted to take some photos with my phone. Her face brightened when I
asked her that, so I put my phone into "camera" mode and I handed it
to Uma. Now, when you're taking photos with my phone, it has a pretty
big screen that shows you what you're about to take a photo of, and
Uma held the phone up and started surveying her surroundings through
the phone. She definitely seemed to understand what she was doing,
like she was looking for a good photo. I told her that she had to
"push that circle button in the middle" when she wanted to take a
photo. She didn't show any signs that she knew what I meant, though,
and then she just kept surveying her surroundings through the screen.
So I told her again, "you need to push that circle button in the
middle if you want to take a photo." I wasn't sure if she was
understanding, so I told her several times, and pointed out the
correct button. Finally, she "got it," pushed the button, and took a
picture of me. Then I told her, "you have to push the button again if
you want to save the photo," and she immediately pushed the button
again. Then I asked her, "do you want to take another photo?" And she
did—she took two more photos of me. Then I asked her, "do you want to
take a photo of the ICU, so you can show people what you've had to
stare at all weekend?" And she understood what I was saying, she
stopped pointing the camera at me and directed it at the room. She
held it up for a while and I thought maybe she'd forgotten about the
whole "circle button in the middle" thing, so I reminded her—a few
times—and then, finally, she took a photo of the nurses station across
from her bed. I'm going to post these photos on my blog so you can see
for yourself, but I thought it was pretty danged cool.
While I was sitting with her, watching her take photos, I had such a
strong sense that: yes, this is going to be a long road of recovery;
yes, there are going to be many frustrating moments for Uma; and YES,
she's going to get through this. And that last "yes" is the most
important one. I mean, obviously. But still: we have to remember that
they told us she was probably going to die. And they didn't just tell
us that once. They told us TWICE. And those aren't words that you
freaking EVER want to hear. But still, the doctors said those stupid
words on the first day, and then they said them again on Day Fourteen
(after she had her stroke). And look at what she's doing now! Every
single day is a blessing and a miracle. Every single day is a day to
say "fie on you" to those stupid doctors who dared underestimate Uma.
Every single day there is something to celebrate.
Okay, so after our photo session, I found the latest copy of Premiere
Magazine in my backpack and I started showing photos to Uma. As most
of you probably know, Uma's a total subscriber to US Magazine, and she
loves the whole celeb thing, so I figured she'd enjoy checking out the
photos, and she definitely seemed interested. There was this one page
that had four photos on it, featuring four celebrities: Sienna Miller,
Justin Theroux, John Cusack, and Mandy Moore. I pointed each of the
actors out and then I asked Uma, "who's your favorite?" And she
immediately pointed to Sienna Miller.
Okay, two thoughts popped into my head the instant she pointed at Sienna Miller:
(1) She understood that I wanted her to point at one of the photos on
the page! I didn't indicate by pointing at the page myself, I just
asked her to show me which actor was her favorite and she immediately
responded! Comprehension! Awesome!
(2) There is NO WAY that Sienna freaking Miller is Uma's favorite
actor in that group.
So then I thought, maybe she doesn't necessarily remember who all of
these actors are and she's just responding to the individual photos
and the photo of Sienna Miller is her favorite photo? Of course, since
she can't talk yet, this is all just conjecture, but that seems to be
the most likely thing to me. Because honestly, Uma: Sienna Miller?
I decided to ask her a different question: "Can you point out one of
the two men?" She furrowed her brow and didn't seem to understand what
I was asking. So I changed the question again: "Can you point out John
Cusack? He's the one who's holding his collar. Who has their hands up?
Who's holding their collar?" Uma looked at the photos, but then she
furrowed her brow again and didn't seem to understand what I was
asking. She seemed frustrated and tired, so I told her not to worry
and put Premiere Magazine away. Maybe we will have to re-educate Uma
in the brilliance that is John Cusack—and if that's the case, I'm
happy to take on the task.
By then it was 6:30 p.m. and the ICU doesn't allow visitors from 6:30
p.m. to 8:30 p.m., so John and I went out to the hallway to hang out
and wait for Uma to be transported back to the rehab facility. John's
brother Wayne came by shortly thereafter to wait with us. (I am still
so in love with the back of Wayne's head—remember, Wayne shaved Uma's
name into his hair? It's so cool.)
For a while we got kind of nervous that Uma wasn't going to be
transported last night—which was a frustrating thought because the
sooner she gets back to rehab, the sooner she can get back into her
therapy regimen—but we didn't have anything to fear: Uma was finally
picked up by the transport people at 9:30 p.m. and she was in her bed
at the rehab facility thirty minutes later.
Visiting hours at the rehab facility usually end at 8 p.m., but since
Uma was just getting checked back in, they let us come in and say
goodnight to her. After John and Wayne said goodnight, I decided to
hang out a little bit longer because I knew I wouldn't be able to
visit the hospital today (Wednesday), so I sat by Uma's bed and talked
to her for a bit, and then the most amazing thing happened. At least
it felt like the most amazing thing to me. I was talking to Uma and I
wasn't looking for a response from her—I was just talking—and I said
to her, "you know how much I love you, don't you?" And then she
nodded. I swear, I screamed at the nurse: "DID YOU JUST SEE THAT!??
SHE NODDED!!!" Because Uma hasn't been nodding or responding to yes or
no questions AT ALL up until now. Nodding a "yes" is huge. So then I
asked her, "and you know how much John loves you, right?" And she
nodded again! And then I told her she was doing really well and she
had to nod for the doctors the next day when the doctors asked her yes
or no questions, and then I was kinda giddy and I just wanted to KEEP
asking her yes or no questions because this was all too exciting.
So then I asked her if she wanted me to call anyone on my cell phone
and have another friend talk to her. She smiled, and then I asked her:
"How about Erica? Do you want me to call Erica?" And she nodded, so
then I called Erica and put Uma on the phone with Erica, and that made
her happy. So then after we finished that call, I asked her if she
wanted to talk to anyone else, and I scrolled through my phone and
said, "what about Bo?" And she nodded again, so I called Bo—but
unfortunately we got his voicemail and I left a message telling Bo
that Uma was "REALLY ANNOYED" with him for not answering the phone,
and Uma was smiling the whole time I left the message. Then I asked
her if she wanted me to call anyone else, and I think she was kind of
over the whole "calling people" game after having gotten Bo's
voicemail, and she shook her head "no." This was a definite "no"
shake. It wasn't quite as clear as the nods she had been doing, but it
was still a "no" shake.
By then, Uma seemed kind of tired, so I asked her if she was
comfortable (and again, she nodded!), and then I said my goodnights,
I just wanted to share all of those stories from the day because I
think they're so encouraging and hopeful. Thank you for all of your
prayers and good thoughts. Keep them coming. You are all beautiful
Oh, one last thing: Michal designed several awesome Uma t-shirts that
you MUST check out! Here's the website:
www.teamuma.spreadshirt.com (proceeds go to The Uma Fund)
Tuesday, March 20, 2007
I sent out this email yesterday and just realized I forgot to post it on the blog. So here it is, a day late but still totally relevant:
Hello everyone...sorry it's been a few days since I sent out an Uma
update...a couple of people have called me this morning to ask how her
shunt revision went and I totally thought I'd sent out an email after
the procedure! Sorry to leave you all hanging. The procedure went
Uma had her shunt revision on Saturday morning at 4am. The doctors are
confident that it was a success (and they confirmed that the previous
shunt was not working AT ALL), and Uma has been very alert since the
procedure and seems to be doing very well. She had lots of visitors
this weekend, too, and that was awesome. At one point yesterday
afternoon, I think there were eight of us there, and since she was in
the ICU (not because she needs to be in an ICU, more because it's the
only place where they had an available bed for her) we couldn't all be
in with her at the same time (the ICU only allows two visitors at a
time) so we cycled in and out of the room in five to ten minute
shifts, and I think it was nice for Uma to see so many different,
Now we're waiting on a CAT Scan, which should happen sometime today.
They wanted to wait a couple of days so they could give the new shunt
a couple of days to work and get an accurate look at what's going on
in her head. As long as the CAT Scan looks good, they will transfer
her back to the rehab facility either tonight or tomorrow. (Call me or
email me if you're planning on visiting her tomorrow--Tuesday--and I
will let you know which facility she's at.)
I haven't given you all an Uma "task" to do in a while, so now I've
got one for you to (literally) chew on. It's similar to the "think
about Uma while you're swallowing" task I sent out a few weeks ago,
but slightly more elaborate.
When Uma gets back to the rehab facility, we are eager for them to
take out the trach in her throat so she can start talking to us again,
but before they take out the trach tube, they want to take out the
feeding tube. And before they can take out the feeding tube (which is
actually a PEG tube in her stomach), they need to get her eating
again. They will start with soft foods, naturally. Like apple sauce
(which they actually fed her in New York, once). And then progress to
So...this week...I was thinking it would be cool if we could all eat
some of Uma's favorite foods and visualize Uma getting back on the
whole Eating Train...because Uma freaking loves a good meal (she lists
"eating good food" as her #1 "general interest" on MySpace)...and
hopefully she'll be back in the whole
eating-with-her-mouth-instead-of-a-tube thing PRONTO so that they can
get that trach out and then we can help her back onto the Talking
Train. Are you with me? Awesome.
Some of Uma's favorite foods include:
--Avocado. This one's a biggie. Eat it alone, or put it on a sandwich,
or in a salad, or in whatever. Uma loves avocados everywhere. So put
'em everywhere. And then eat 'em.
--Curries. With chicken or whatever. Spicy, juicy, tasty curries.
(When Uma left for New York, she was only planning on being there for
3 days, natch, and she left some dishes in the sink, which then stayed
in the sink for awhile because Uma's New York trip ended up being, oh,
37 days longer than planned. Anyway, I mention this because, based on
the contents of Uma's dirty dishes, the last meal that she cooked for
herself at home before leaving for New York was curry. So curry on, my
--Speaking of spices, Uma loves the spicy. Ethiopian, Sri Lankan,
India, Thai--the spicier the better. She's got an extremely high
tolerance for the spicy stuff. I had Sri Lankan leftovers with her
once (that she had brought home from her Aunt and Uncle's) and I was
sweating like a pig, and she kept telling me I was crazy ("it's not
THAT hot"), so if it makes you sweat, that's good.
--Chicken. More specifically, chicken bone marrow. I know this is
super strange, and I doubt anyone on this list is actually going to go
out and crack open a chicken bone and suck out the marrow, but I'm
listing it because it's seriously one of Uma's favorite things to eat
and maybe someone WILL go out and crack open a chicken bone and suck
out the marrow, and that would be such an incredibly Uma thing of you
to do that I'm sure the good healthy vibes you'd be sending Uma's way
would be, like, even more intense than your usual good healthy vibes.
--Marmite. This is another weird food suggestion, but what can I tell
you: Uma's a strange duck. I've never eaten Marmite and I'm not even
exactly sure what it is, but I think they sell it at Trader Joe's and
other specialty grocery stores, so if you happen to see it while
you're shopping, throw it in your cart and give it a try. I think it's
something that one would usually spread on bread, but Uma likes it so
much she eats it straight from the jar. Not that she eats it very
often. It's something she used to eat a lot in Taiwan. But last
December, when I asked her what she wanted for Christmas, one of the
things she asked for was Marmite. So she's definitely been hankering
for it lately--and who knows, maybe you'll discover a new paste
delicacy and you'll start craving Marmite too? Weirder things have
And some drink suggestions:
--Red Wine. Uma enjoys a nice glass of red wine, but she ain't picky.
The cheap stuff works just fine.
--Red Bull. I know, gross, but Uma is totally addicted to the stuff.
There are usually at least six or seven empty cans rolling around the
passenger foot area of her car.
Alright, there you go: eat and drink up. Thank you for your continued prayers!
ALSO, here's John's latest update, from last night:
since the shunt revision early on saturday morning uma
has had a presence in her countenance that i haven't
seen so far. she is calm, sad sometimes, but clearer.
her facial responses to people are faster. she's not
fidgeting or jerking her left leg around anymore. her
right arm and hand are not locked up in spasm anymore.
this has lasted for two days now. twice the doctor
told us that she seems more 'awake' and that he thinks
the shunt is working.
they decided to do the ct scan tomorrow, monday. i
think this is medically prudent because it allows them
more time to see what effect the shunt has had, not
just on her outward behavior, but on what's taking
place inside her cranium. i've been taught tonight by
dharshi to ask the doctor these things tomorrow - Is
her 'mid-line' still shifted or pushed? Is there any
new bleeding? Is the shunt place properly? Is there
any calcification taking place? Has a radiologist seen
There were many moments today between Uma and I that
were priceless to me. Just seeing her look at me with
such clarity is something i'll never forget. Lately it
feels like the passage of time has been altered for
me. I value those moments with her as if they might
never come again. This is NOT a pessimistic viewpoint
for me. This is living right now, IN this moment, and
valuing it as if it were unique and passing....as if
the memory of it will be of staggering importance to
me. And so the memory of those moments passes through
and adheres to every fold in my brain - at least
that's the way it feels.
So - a good friend of mine in New Jersey emailed me
and told me how amazing it is that so much love has
come down from this challenge. It IS amazing. I'm
changed for the better and I've heard that from many
other people. And the truth is, I don't know how I
would have come this far without every word and action
of love that we've received. I/we need ALL of it and
accept it gratefully. There are so many things that
can hide or crush love in this world. But Erik said
that he thinks Uma will come home to a world that is a
little bit better because of what has happened and how
we've all responded to it. I think he's right.
Lastly, it's just really not too late to pray for her
in this shunt business. I've been praying all day
about this and it has helped me to do it. Help
yourself :). She needs to move out of the hospital
setting and needs to do this with utmost confidence.
We know that the shunt will be something we'll be
tending to for the rest of her life but, for right
now, we want to have it work....let's say, for 6
months without another hospital stay. We need to know
that we can jump on this rehab with a real sense of a
reduced need to worry about whether or not she's
qualified medically to participate in rehab. That's
something to pray for....it's on-going, it goes on.
Pray a boundary of safety for her, for her head, her
brain, her spirit.
The plan for tomorrow, at least from another amazing
nurse, this one named Randy, is to get the scan done
in the morning and, if all goes well, move her back to
rehab the same day. I will accept whatever the scan
says and will always push (with respect and tact) for
the very best care for her. Pray for me, too if you
can spare one.
In hope and in love,
HERE ARE SOME WAITING ROOM PHOTOS FROM SUNDAY (we're not actually in the "waiting room," though, we're in our de facto waiting room, i.e. the hallway outside of the ICU) (which is where we would wait to see Uma because the actual waiting room was just too danged small) (thank you to all of the awesome visitors Uma had on Sunday: Anna, Erica, Jamie, Ted, Michal, Jeremie) (and thank you Eleanor for bringing John lunch on Monday, and thank you John's parents for general awesomeness and for taking John out to dinner on Monday, and thank you Rebekah for bringing John lunch today)
UPDATE: Awesome news!
I just got this text message from John:
"Transfering 2day 4 sure. Saw the ct scan myself & shunt is def. IN the vent."
Oh, and also!
Several friends of mine--two couples, Bridget & Chris, and Jessica & Hamish--had babies this week and I just want to congratulate them. I haven't seen the little tykes yet, but I've seen photos and they're both little beauties. And I figured there are so many awesome people reading the blog these days and sending out love, so right now I'd like to send out a hearty "welcome to the world" to Rita Cathleen and Lucinda Rose. So...welcome to the world! If I've learned anything these past weeks, it's that there is SO MUCH goodness out there, and I'm happy to include the two of you in that goodness!
And here's the latest beautiful example of Vandalism For Uma:
Sunday, March 18, 2007
Okay, I'm going to start today's update with John's update:
Erik and I both left the hospital last night (friday) at about 9pm. Uma had fallen asleep and seemed ok. There was a nurse named John from Nigeria I think who assured me he would call me when she was taken down for the shunt revision.
We had waited there all day for a bed in the OR to open up. It was, again, one of those days and nights where you just had no idea what was going to happen to Uma and you had absoulutely no control over any of it at all. You just wait, knowing that this is a fairly time-sensitive thing. Why else would the neurosurgeon at the rehab facility have looked at the ct scans and then instructed everyone to immediately begin expediting Uma's transfer? ....so you wait and pray, or try to pray. It's frustrating knowing that we lost at least 2 weeks in NY around this whole shunt issue and then find out, on the way out the door, that we need to revise it. That is when your sense of no control begins to really crush your soul. The pain from this is just hideous - there she is, doing everything you could ask a human to do to stay alive,and you realize she's NOT getting the help that was promised from people who are SUPPOSED to know, SUPPOSED to help. To think that she survived that amount of bleeding (Dharshi looked at the ct scan from Jan. 31 and said it's a miracle she's alive at all), that amount of vaso-spasm, coma, pneumonia, infection, catherterisation, triple H therapy, drugs, surgeries, procedures, confusion, inactivity, poking, prodding, commands, loud noises and voices every day, a bad shunt, really bad hydorcephalus and STILL managed to mouth words, smile at people, laugh at jokes, cry at photographs and news of people's love, move her bad leg and foot and hand, sit in a chair, write her name, roll a wheelchair, and WALK - even if it was just astep or two.....and then to just be waiting with her in ANOTHER hospital setting (wires attached to monitors, alarm bells sounding off, respirators etc) was just....at times like that the question of "why her?" can easily pop back into your head, and your sense of the blessings involved can just slip away.
On the way home I called my dad and, among many other things, we discussed what God, prayer, sacrifice, acceptance, and love all have to do with one another. I was thinking about how many people's lives have been so positively changed by Uma's illness and ourwritings etc. The latest evidence of this was when a complete stranger who happened to be a Physician Graduate student saw Uma in bed at the CMA (closely monitored area - a step down from Intensive Care Unit). He came up to me in the hallway and said, "My wife is an intense blog follower and has been religiously following this on the web......I'm glad you made it out here (to California)" And today Erik showed me photographs of 5 school classes somewhere who had all taken class pictures with painted signs saying things like, "get well uma!" and "we're praying for you uma" One picture had one of the little students posed in a palm-together prayer position. Add to this the fund raiser, the email and calls I and many others have made and received, the way the nurses and pastoral counselor at St. Vincent's reacted to her, the thousands of people praying for her everyday, and the changes and responses in people lives is truly amazing. This is truly a very, very large action of love on the part of the most widely varying group of people I can imagine.
This, coupled with my own experience of a renewed sense of love and prayer and connection is an amazing blessing. People talk about blessings in disguise pheonix-like experiences, or unimagineably powerful lessons about life that are learned as your heart breaks from them. And I would agree with all of them.....but last night I just had to pray, "ENOUGH! Enough "blessings" disguise or otherwise. Enough lessons for other people. Let's have a blessing for HER!! Let's get her some definitive medical help so that we can all have MORE lessons of love and life and the divine when she has been rehabilitated!" Yes....I yelled at God. But the way I see it, my God wants a relationship with me and that means all of me - at my best, my worst, and in my deep frustration....and there's a difference between being angry and being frustrated.....I was telling this stuff to my dad over the phone and he replied, "You'd better get ready for a phone call...."
At 4 am (on Saturday morning) John called me and told me they were taking her down for the shunt. I got there at about 5:35 and about 10 minutes later, the anesthesiologist wheeled her past me. I asked how everything went and she said,"fine. no problems at all" Subesequent conversations with the doctors informed me that the shunt revision went well and that csf was flowing well now and that the previous shunt was fully blocked. I also got them to agree to another ct scan to verify the position of the shunt before transferring her back to rehab.
So, if all goes well with the ct scan tomorrow she will, most likely be back at rehab on monday.
And......she is doing well. She's not on a ventilator,her right arm and hand are about 90 per cent more relaxed than I've seen in weeks, she picked up a magazine with her left hand to look at it, and she's not agitated, not constantly moving her leg, and she's not leaning her head to the right tonight. But, most important to me, she looks different. She looks more calm, more focused, her pupils are less dilated in my opinion and her smile is more even.
She got visited today by Wayne (who had his hair cut today and had "UMA" carved in hair on the back of his head), Aida, Lauren, Ann and Keith and, of course, me and Erik. Lots of smiles and recognitions.
We'll see what the next two days bring. I am praying hard for a clean bill of health. It's the only way to have any rehab be effective. I'll be back at the hospital tomorrow at about 9 to keep pressing the ct scan and visit her. There's no internet there or anywhere around there so I'm back to the late-nite writes.
all my love,
And here's a little backstory, an email I sent out on Friday night:
I just wanted to piggyback on John's email from tonight and give you
all a few more details about where we're at...
Basically, we spent the entire day waiting for Uma to get her new
shunt...and waiting...and waiting...and the hospital staff told us
that we were waiting for an operating room to "open up," which could
be as soon as "the next ten minutes" or as late as "tomorrow." So we
waited, and waited, and waited. Which wasn't TOO bad because we were
able to sit with Uma, to be with Uma, to talk to her, to hang out with
her. Our friend Sissy Boyd came by, and it was great to have her
there, and Uma really responded to Sissy, and it was a good day. Uma
was doing good.
But then at about 7pm they took her to the ICU (and they wouldn't tell
us why they were moving her--there was no change in her condition--I
honestly think the only reason they moved her was because they were
shuffling patients around for some bed situation, and they shuffled
Uma to the ICU) and they told us that we couldn't go into the ICU with
Uma because there's no visiting from 6:30pm to 8:30pm in the ICU. So
we waited to see her again...and then we got to see her at 8:30, but
the ICU limits visiting to FIVE MINUTES every hour. So we could only
be in there with her for five minutes. And she seemed kind of freaked
out and scared, like, "why am I in this new room with new nurses?
what's going on?" At least, that's how I read her expression. So John
and I told her, again, that she was going to get a brand new awesome
shunt and that we just had to be patient until the procedure and she
would be back at rehab soon, and to rest--to sleep--and we would be
back to see her soon.
So, anyway, that's where we're at. We're waiting, and Uma's in a new,
random ICU for the night. Which is tough and frustrating because we
want to be with her and we want her to get her shunt fixed both
beautifully and SOON.
So...we have been waiting, we are waiting, we continue to wait. And while we
wait, we need to pray that an operating room "opens up" for Uma first
thing in the morning, we need to pray that the shunt procedure is
awesome and perfect, and we need to pray that Uma has strength tonight
and that she can relax and sleep and not be afraid while SHE waits in
that new bed, in that new ICU.
Thank you and love,
So now it's Sunday morning and Uma's had her shunt procedure. The doctors are confident that it went well (and that the previous shunt wasn't working AT ALL). They are going to do a CT Scan sometime today and assuming everything looks good, we should be going back to the rehab facility tomorrow. The visitors we've had the last few days have been wonderful and I know that it's meaningful for Uma to have such great contact with her friends. Thank you, and please come by to visit with Uma if you haven't yet. Just email me and I'll give you all of the details.
Okay, I'm about to leave for the hospital myself, but first I want to post a bunch of pictures.
These first few photos are from the New York waiting room. I was cleaning out my camera-phone and I don't think I've posted these photos on the blog yet.
This is Erica, Eleanor, and Eleanor's fiance Bill:
The above photo was taken on Uma's second weekend in New York. We were still enmeshed in pretty scary times. I think Eleanor is writing a letter to Uma. I've been writing emails to her because I know that one of these days she's going to be able to check her email again and it'd be nice for her to have some real emails waiting for her (instead of just spam). My aunt Jill gave me the idea after telling me that she had been emailing Uma. If you don't have Uma's email address, leave a comment here or send me a quick email and I will pass Uma's email address on to you.
This next photo is Adam:
Uma's dad Nithi calls Adam "the chocolate man" because Adam is awesome and got into the habit of bringing us hot chocolate every night. It was so nice, after a long day in the waiting room, to get a hot chocolate pick-me-up every night around 6pm. We all got completely addicted. (Okay, I was already a hot chocolate addict, but still, now I'm an even worse addict.)
Sezin sent me an email last night with a link to an article about how scientists have discovered that cocoa beans improve brain flow. Total coincidence that we've all been consuming MASS AMOUNTS of cocoa beans. So we need to get Uma addicted too, and I'm going to ask them if we can start giving her a little bit of cocoa every day.
This next photo is Jason and Nithi:
It's kind of a strange photo, yet? (Okay, um, I'm rereading this and just saw that I wrote the word "yet" instead of "yes," and I totally prefer the oddity of "it's kind of a strange photo, yet?" to the generic and mundane "it's kind of a strange photo, yes.") Waiting, waiting, waiting. Jason got married yesterday! (Congratulations Jason!!!) (He didn't get married to Nithi, that's not what they were waiting for.) (Obviously they were in the waiting room waiting for Uma.) (Gosh, this paragraph doesn't make much sense.)
Okay, moving on, this next photo is of John and me:
Eleanor took the above photo. I don't have any idea what we're looking at on our phones, but whatever it is, we're certainly FASCINATED by it~! (I just asked Eleanor if she remembered what we were looking at when she took this photo and she thinks that we're comparing photos of Nithi we both took with our phones.)
Okay, this next photo is another photo of waiting taking place in the waiting room.
That's Sladiee sitting to my right, talking on her cell phone. Sladiee's mom Linda had a brain aneurysm about a week after Uma did and I've been saying lots of prayers for Linda and thinking of their whole family and wondering how they're doing and hoping that they're staying strong and that Linda is making improvements. I called St. Vincent's hospital yesterday to find out how Linda was doing and all they would tell me at the reception desk was that she's still in the ICU. So say a prayer for Linda when you can. She's a good mom and she's got two amazing kids. (Sladiee and Elman--say a prayer for them too, I hope they're doing okay.) (I miss them, they're good peeps.)
This next group of photos is of Uma being moved to the rehab facility:
The above photo is of Uma on the Air Ambulance. John sent this photo to my cell phone just as they were about to take flight. Look at how tiny the plane is! (I would like to take a moment here to send out another thank you to all of the amazing, generous people who contributed to The Uma Fund and made it possible for us to get an air ambulance in the first place.) (Thank you!)
Marie and I were both waiting for Uma at the rehab facility when they arrived. (Uma's aunt and uncle, Prakash and Nava, were waiting there too, but we were waiting in different locations and we didn't all find each other until after Uma arrived.) Marie and I were so excited to see Uma again (it had been about a week and half or so since either of us had seen her in New York) and every time one of our phones would ring, we'd jump around and be like, "they're here!" and then look at the phone and see that it was someone else calling, until finally John sent me a text message with six awesome letters: "landed!" And then Marie and I started watching the door, like, so excited that any second Uma would be coming through it, and as we were watching the door all eagle-eyed, we saw the ambulance drive past and we ran outside and that's how we got to be there to take these photos of her literal arrival.
These Air Ambulance medics were the nicest people.
And how much do you love their outfits? Seriously, I want a cool Air Ambulance jumpsuit of my own.
The above photo was taken just after Uma had been brought into her rehab room, John was thanking the Air Ambulance medics. And then the rehab nurse started getting Uma all situated in her rehab bed:
The next two photos were taken at the county hospital while we were waiting for the shunt procedure:
(Don't you love how Uma has her hand rested on John's back? John sat down and put his head down for a moment and then Uma just put her hand up there, comforting him. It was a nice moment to see.)
Here's a much needed pre-shunt nap:
Here's a much needed post-shunt nap:
And here's another much needed post-shunt nap:
Awesome, rockstar visitors: (I will add captions to these photos later, I want to get on the road to the hospital right now.) (Okay, now I'm back adding captions.)
This first photo is of Uma with Sissy Boyd.
When Sissy first sat down with Uma, Sissy got a bit emotional and shed a few tears and then Uma's face just filled with emotion and she cried with Sissy for a moment. I would say it was about thirty seconds of pure release. Uma needed to let it out, and she did, and then Sissy started talking to Uma and listened. It's hard to see Uma cry, but it's GOOD too--because it's another indication of the fact that she's aware of what's going on.
This next photo is Aida and John. Uma was asleep when Aida arrived and we were waiting for her to wake up so we could go back and hang out with her. Aida flew out to New York with me and my mom on January 31st, aka Day 1, and so the last time Aida saw Uma was when Uma was still in her coma. So it was really great for Aida to see Uma again, so awake and alert.
Okay, this next photo is of Ann Closs-Farley. I've been worried that John isn't taking engouh care of himself and I put out a call for friends to bring John lunch, and Ann and her husband Keythe volunteered to take care of his lunch needs on Saturday. They were awesome. They brought a really tasty curry dish, as well as some equally tasty japanese pineapple gummy candies, a spongebob squarepants book (that their daughter Violet wanted to read to Uma, but unfortunately childred aren't allowed in the ICU, so she'll have to wait to read the book to Uma until Uma's back at the rehab facility), a rubik's cube, and a few other assorted goodies. It kinda felt like Christmas. So nice.
And Ann had some great ideas about making Uma's room at the rehab facility feel more homey, i.e. bringing cozy sheets from home, putting up our own window curtains, things like that. And next time Ann visits, she promised Uma she would paint Uma's toenails, and Uma gave Ann a smile in response, so I think she's game.
After lunch, we got a visit from Lauren Campedelli:
It looks like Uma's sleeping in the above photo, but she was actually blinking when the photo was taken. I didn't ask her to take the photo again because I know that if I had, she would have rolled her eyes at me, and she rolls her eyes at me enough as it is.
It was so good for Uma to see so many friends. Thank you for coming, Lauren! (And everyone who has visited!)
The next three photos are of John's brother Wayne's head. More specifically, the back of his head. More specifically, The Best Haircut Ever.
Okay, and these final six pictures that I'm posting are my favorite pictures. They're from Leona, they're the photos that John mentioned in his email update above. First, some context from Leona:
"When I told my mom about Uma, she went to each class in her school to share Uma's story and ask for prayers. After hearing about her, students decided that whenever they came in contact with someone that didn't know her story they would tell it to them and ask for more prayers. If that person already heard the story they would just say "Uma" to each other as an instant prayer for the whole family. These photos were taken on the day St. James School designated "Pray for Uma Day." Masses were dedicated to her all day long, and even days later, my mom was greeted by little "Uma's" in the halls that, collectively, sounded like one long meditation."
(note: i've removed the school prayer photos at the request of someone from the school.) (But Uma saw the photos and smiled and I'm not sure that she yet comprehends completely how much love is out there for her, but hopefully something like those amazing photos helps her understand it)
The signs read:
"St. James 5th Grade Loves and Prays for Uma"
"Uma...We are praying for you...Get Well from Grade 4"
"We've been praying for you Uma...2nd grade."
"1st Grade is Praying for You! Peace and love. Have peace, Uma"
"Dear Uma, We are praying for you! Love, the Kindergarten Class at St. James."
Amazing and beautiful!