Monday, March 26, 2007

a seriously LONG uma update

(the above photo is of John and me the other day at the hospital when we wore THE EXACT SAME OUTFIT, same colors and everything) (so embarrassing)

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.

THURSDAY:

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:

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:

Hello,

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
well.

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
her.

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
stretching exercises.

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
read.

love

john

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:

hello everyone,

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
woman.

here is a link to a site that some of you might find
interesting. it's some idea of what she has gone thru.

http://www.emedicine.com/EMERG/topic559.htm

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.

JOHN'S UPDATE:

hi everyone,

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
balance.

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
basic things.

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
and actions.

love

john

5 comments:

Jennifer Hawkins said...

Thank you for the updates, I really mean it. I have soo many questions. This helps to feel apart of what you guys are going through.
LOve you all

communicatrix said...

No such thing as too long when it comes to an Uma Update. Hair, maybe; Uma Updates, no.

Anonymous said...

sigh. thanks for the continued updates and amazingness. love, lindsay lindsay

The Mad Doctor said...

Erik,
Awesome updates. Longer is better (okay, now I want to laugh like Beavis and Butthead.)

Your friendly neighborhood internet stranger,
Stef

goingRAWr! said...

done.
with love.
xo
m