Thursday, June 30, 2011

**the sun came up with its conclusions

my boober do

he is your friend, your partner, your defender, your dog. you are his life, his love, his leader.
he will be yours, faithful and true, to the last beat of his heart.
you owe it to him to be worthy of such devotion.

yes. he who has been my best friend, my boy, my companion, my confidante, and my rock. to honor him and let him go with dignity and without suffering is the last and best gift i can give him, even though it comes at the cost of my own heart that is being torn from my chest. it is worth this- all of this, to have had every single day with him these last seven and a half years. even if i am not ready (i can't do this, i hear the words escape from my lips sobbing into G's chest tonight)- i can't do this!- but i can do this, for him. i put on my armor, and i will pocket my tears for the next seven days as we look to our last week together- me and my boy. his body tired and working too hard now to breath against those tumors in his chest.

what a blessing he is- my GOD what a blessing he is. soon i will wake up to his memory and thousands of photographs and he won't snore beside me and he won't lick my face any longer or greet me ( at the door. he won't greet me at the door, as he has every single night i've come home from work.

this is enough for now. look at that face! oh i wish you had met him, every one of you reading this page! and those kissable lips and that huggable body. why am i sitting here, typing into this void that will never be filled? he's in the other room, waiting for me. it's our time now. now! yes. yes yes yes. damn it.

**7/1/2011: a rough night... too rough and it took more than a couple hours for Ransom to be able to fall asleep. so, today we will say good-bye.

thank you for being here and for your kind words of encouragement and support. it is impossible to put into words the magnitude of what lies before us- but it is time for rest, for him- and to spend these last hours in his presence.

plus, he's asked for bacon and eggs for breakfast. it's only 5:45 AM, but he didn't get a lot of sleep and he's feeling for a smackerel of something good to eat. that's my buddy. that's my boy.

Monday, June 27, 2011

weekends always end too fast

big in japan


the sport of barking for table food
(pentax k1000, fuji superia 800, film)

japanese toys in antique shops, a first visit to the library (gasp!), and barking for table food. all good things. yes, those are tumors in his neck- and yes, they are huge, but not as huge as the love that is keeping him healthy and strong, in spite of those suckers. :)

Saturday, June 18, 2011



I decided to send E to VPK this summer, it's a 7 hour class and there is no nap, so she basically went from napping every single day for an hour (which she TOTALLY needs) to no nap cold turkey without any transition, other than one weekend just before VPK. In kindergarten, there isn't any nap so truthfully we need to get her off them anyway. She was moved to a new room at her after school facility to be in this class with an ESE trained teacher who is the polar opposite of the teacher she had at her elementary school (also an ESE teacher) Ms Shannon who is vibrant, empathetic, full of energy, and a take no bullsh*t you will do as you are told (my kind of woman) teacher. This teacher, Ms. Lee is VERY soft spoken, willowy, "guides" without being firm, and my impression sort of lets the kids take charge a bit. I have heard she is an excellent teacher though and she came highly recommended, plus I wasn't about to move Ellis out of her facility- it was enough she had to move classrooms and as you all might have figured out by now, she doesn't cope easily with a change in her nap time much less this kind of big change.

Anyway, at orientation I let the teacher know she has a huge personality, is one of the happiest children I have ever known, but that she probably won't see that for a bit because she will shut down in a new environment and to just give her time- she will probably cry the first few days but will come around quickly. She is stranger shy (extremely) but once she knows you, she is your friend for life sort of thing. I guess she took this to mean she doesn't transition well period, and has allowed E to (in her OWN TIME) move from one activity in the classroom to another at her "own pace" and not with the class- OH HELL NO. You give my kid an inch she will take 10 miles. NOT GOOD.

I was picking her up Thursday and she looked haggard. Now granted the kid can barely stay awake through dinner all week because of the lack of sleep that she is used to during the day. We have to fight to keep her awake until her head hits the pillow at 7-7:30 at which time she is OUT. So, I knew she was tired, obviously. Lee tells me she was crying in the afternoon, I tell her she does this when she is exhausted or hungry (or sick), and Lee mentions they took her to the front office to check her temp because she felt hot (she always feels hot, that's E- and she especially feels that way when she cries). Anyway.

On the way home E proceeds to tell me she fell out of her chair in housekeeping and face planted and it hurt "really bad" and is trying to show me where she bumped her head. Tells me they took her to the front office for an ice pack. (?) I'm extremely upset I wasn't informed. I call the director (Leiba, who I am friends with, she has a 12 year old she adopted at 10 who is deaf, was in China at the same time as me) who tells me that no, she didn't fall as far as they know, but she was playing with the blind boy in housekeeping, was "directing him" (this is so E) and he did not want to do what she was telling him to, she got upset, and the next thing Ms Lee knew, she was on the floor cradling her head (laying on her arms), crying. That makes more sense as I know my child and if she had fallen, which TERRIFIES her, she would have screamed, and 2. there is not a mark on her to indicate she landed on her head. Leiba and I discuss the rest of her behaviors all week and I find out she has not been following direction (not at all like E)- (or, hasn't been forced to, Lee let's her come in her own time from one activity to the next for fear she will upset E even more), she refused to take her place at the lunch table that day, and she is laughing at a child who speaks differently and she gets the WHOLE CLASS laughing with her and is the class leader. OH HOW MY BLOOD BOILED then quickly simmered and then cooled, realizing how hard this has all been for her.

Leiba and I are very close and parent in much the same way (we're hard-asses, meaning- don't give our kids exceptions because of their disability- same expectations, same rules, encourage independence, etc, if you fall, brush it off and get back up). I told her I would meet with Lee to make sure she understood my child was to follow the same directions, thrives on routine and strong boundaries, that time warnings will help if she is tired or struggling- "you have 2 minutes to come to the next activity or you can move to the bench" (quiet time, not a time out), etc. She responds SO well to time warnings and firm discipline. I know my kid like the back of my hand. Yes, she has unique physical needs, but otherwise damn well treat her the same as other kids and she needs to have the same expectations placed on her.

And yes, the teacher did address the laughing to the whole class and spoke about how it isn't nice to laugh at other people because they are different without naming E specifically.

25% of this breakdown in behavior and acting out is a new class room. 75% is grieving- missing her school and teachers (especially Ms. Shannon) of the last 1.5 years.

100% of this is NO NAP. I told Ms. Lee there are only 3 things that make E unhappy (and that I've never seen her act out and was relieved that she was because she has every right to feel angry and has never acted out before and honestly it was beginning to worry me and WHEW my kid is HUMAN!): Number ONE is always that she is tired. TWO is that she is hungry, THREE is that she is sick and if there is a 4th it is that unnameable grief, which is extremely rare any longer, but that she is grieving leaving Ms. Shannon, her favorite teacher, and misses her tremendously.

After snack and taking some quiet time to work on her Dad Day painting for Baba, she sat in my lap and we talked about listening and following direction, and how it would feel if someone laughed because she used a wheelchair (right now they all think it's the coolest thing), and how it's okay to HELP our friends but not tell them what to do. I told her I understood she was so tired and missed Shannon but that we were going to see her this summer and that Ms Lee loved her too and that it would get better and that it was okay to feel angry and to tell me she was angry but not to be mean to our teacher and to our friends. It seemed to really get through and she had a pretty good day yesterday. She asked me if she could have her nails painted this weekend and I said maybe next Saturday depending on how her week went and if Ms. Lee told me she was doing the 3 things we talked about: (following directions/listening, being nice to her friends/helping- her norm, and not laughing at people because they are different from us).

As I think back over this week, and the decision I made to put her in this class, I am grateful I did it- it was good practice for her in terms of the upcoming BIG transition to kindergarten, and good practice for me. And this is all I know: I TEAR UP when I take in where she has come from. In my sister's words: She truly is SO strong. I would give anything to have been able to hold her in her earliest days, though I don't mourn that I wasn't given that gift. Her mom (parents), must have been scared to death. They kept her for 3 months, watching that mass on her back grow to the size of a small human head. Fu Gaomei was a fighter and still is. I am so lucky. I would go to the ends of the earth for her. She fought without her MOM holding her and she WON. Against every odd, when she never should have lived. And she not only lived, but SOARED.

I've never in my live known anyone like her.

We'll get through this and she will come out shining again, and she will probably teach me more than I can possibly teach her.

Friday, June 10, 2011

(pentax k1000, film)
E in June, this year.


E in April of this year- barely fitting into her first chair (she has fast outgrown it!)

i'm gonna get you!
February 2010, just after she received her chair (once it was customized)

here i go
one year ago, in the same chair you see above (not her sports chair).


uncle jay, aunt karen and mei mei
December 2009, before customization

unbelievable to me how this baby girl has become little girl- i miss her tiny
28 pound (yes, at almost 4 years old!) body that we first met :o)

and yet, i am so very proud of who she is and how we have come to
know one another. i'm not sure if she has changed or if we
have just come to understand her as she has opened up
over these last (almost) 2 years together.

all i know is that we have one dang amazing child in our midst
and we are very blessed by her presence in our lives.

(kindergarten next year!

kindergarten! people!)

Friday, June 3, 2011

he ain't heavy, he's my brother

the love we carry
(pentax k1000, kodak max 800, film)

he ain't heavy, he's my brother
his welfare is my concern
no burden is he to bear
we'll get there
all i know - he would not encumber me...

and the love doesn't weigh me down at all...

he ain't heavy, he's my brother

listen here.

Thursday, June 2, 2011

racism in a conversation with a patient.


Entering a patient's room (not that this is of any significance, but she is from Holland, and not American, and maybe I state that only to show that racism is present everywhere in this world). She was half way through a blood transfusion and a visitor was saying good-bye.

Patient: "I was just talking with my friend about this blood, she was asking me if it came all the way from China! You know, if this was Chinese blood."

Me: (utterly baffled): "I'm sorry? If this was blood donated from China?"

Patient: "Yes. Well, you know, I don't want to turn into a monkey."

Me: (utterly shocked and horrified, hiding these emotions): "Are you implying in some way that Chinese people are monkeys?"

Patient: "Well you know what I mean"

Me: "No I don't know what you mean. I can tell you that your blood was donated locally and I can assure you that Chinese people are not monkeys. My daughter is Chinese."

Patient: (not missing a beat and not even remotely remorseful for her prior remarks): "Oh she is! Do you eat a lot of Chinese food?"

Me: (leaving the room): "I'm not sure what that has to do with my daughter being Chinese. I'll be back to check on you in 30 minutes, if you need anything before then, please call".

What I should have said: "No, we like to eat monkey brains".

god help me.