Tuesday, April 27, 2010

Reality Check with Arolf

I reminded him this morning that today is "no technology day" again... and he went into his whining fits.  He still does have them.  He still shouts.  He roams around.  Jumps around. Hums.  Even with therapy (he's been on behavior modification therapy for a more than a couple of months now), he still acts out.  He even fights with his therapist, pulls her hair, for example.

He also achieved some of his goals, though.  He now has eye contact (but has to be reminded or he forgets), and he says "excuse me..." before he bothers you and talks to you... he puts his trash in the bin... he's more responsible now like turning off appliances and such.

We still have loads of goals to achieve, and it will take years for him to achieve half, if not all. It's an expensive mean feat.  And as he grows older, additional goals add up.  Like nowadays, he's learned how to lie.  Tsk, tsk.

I set every other day to be "no technology day" meaning the kids cannot touch the PC, the DVD. and their DS Lites.  I gave them options like board games, I bring out art materials for them to play with.  Sometimes, I allow them TV time, though.  Since there really was nothing to do this summer.  They were supposed to take lessons like art or sports, but that all changed when I got sick.

Anyway, when he started, I made him stop right there and then, complete with menacing eyes and voice.  I talked to him about these key points:

-- he's 11 and turning 12, meaning he's old enough and he should stop acting out, and start acting his age
-- that we hired a therapist for him to get better and not worse
-- that although he got passing grades, they were low
-- that he needs to speak in Taglish (or else...)
-- that even though he talks in English, he is often grammatically wrong that's why his English grade is not that good, and that is just shameful, and every time he does it, people will laugh at him (to which he replied, he wishes he was born an American)
-- that he needs a religion, and not go to church because we make him go
-- that he needs to get good grades for him to graduate, go to college, get a job, and have a family of his own (to which he exclaimed "what???! I need a job to live???!)
-- that we will not be here for him forever, to care for and protect him

There were a lot of things that we have discussed, and some of them led to nasty threats and whining.  Yes, I know, but somebody's got to do it.  Somebody's got to treat him like any other.  Somebody's got to tell him the awful truth about life.

I saw it was difficult for him to grasp everything.  I saw how he sometimes turned a deaf ear and looked somewhere else but me.  I heard how he hummed to tune me out.  I saw his dimples appear when he's starting to cry.

I often think why we were given these trials in life.  Why me, why him, why now.... Isn't one situation enough?  Isn't Arolf's condition enough of a problem for a family to go through?  Should my being sick (again and again) pile on top of everything else?

There really was no definite answer.  All I do nowadays is sigh, and then talk to God... I tell him "Ikaw naman, pinapahirapan mo hindi lang ako, alam mo ba yun?  Sana kung ako lang.  Eh kung ganyan gusto mo, bigyan mo kaming maraming moolah, ok?  Alam mo naman panahon ngayon, puro gastos.  Therapy ni Arolf.  Gamot ko.  Kaw naman eh... hinay-hinay lang.  Uuwi din ako... wag lang ngayon.  Istokwa muna ako dito, k?  Pick me up in about 35 more years, it's a date."

I imagine him answering me... "hay.  ok, fine.  whatevs."

And I wake up refreshed, ready to drink my meds, eat my oatmeal, bread, and whatever is on the table.  I get to live life one breath at a time, and I'm okay with it.  i just hope that Arolf gets better and better everyday, and this morning did not go to waste... that some of it he retained and understood.

Well, if not, I already told him that since I'm no longer working, I'll be at home watching him like a hawk and I will be a force of nature on him.  To which he replied....

"Oh, brother....."  and slapped his forehead.

Friday, April 16, 2010

I refuse to stop bleeding....

Bleeding time--a medical test done on someone to assess their platelet function.

Julia Roberts look-a-like medtech: "ang tagal...."

Me: "that's ok... i don't wanna stop bleeding... if i wasn't it means i'm dead, right?"


it is difficult to know that there are things that are really beyond your control. However, I will not be me if I am to give up now. I have not been known to be that person.

I cried. But I am moving on. As always, tears are just a cleansing process--to lubricate my eyes, and help me see clearly again.

The doctors said that graft is rejecting. They said all they could do now is to try to lengthen the life of the graft, which is still, thank God, functioning. And then eventually, if it fails, then I go back to dialysis.

I do not want to dwell on the whys and hows. It may or may not be my fault. What with working and all. The risk then was really high since my donor was non-related, and I have 96% PRA. The transplant was a real gamble. I do not want to say that I lost. I'm still alive, aren't I?

Dialysis. The most important thing is not to get sick again while on it, and you'll be fine. You just get stuck with 2 huge needles and sit on a lazy chair for four hours twice a week, read a book, watch tv, or listen to your mp3 player while they clean you up. Not a biggie. Except that it's expensive, and sometimes a pain in the butt. There are hundreds of patients who undergo dialysis for years already. I call them hustlers. They arrive with piles of food, pillows, and bottles of water. The women bring gossip. Dialysis is their bonding time with their older kids. I hear them talk about their husbands womanizing, their neighbors, their expenses. The men even drive themselves home after. All the drama in one big room, you don't need soap operas.

anyway, i'm sure God has plans for me. Life is too short to dwell on things that we cannot change. I have dreams to give up, but then I am building new ones that revolve around the most important part of my life, and that is my family.

So, I am staying home, taking my meds, going to check-ups, and be a wife to a good husband; a daughter to the most supportive and bravest parents in the world; a sister to 2 equally terrific brothers and 2 loving sisters; an aunt to the 5 most loving nieces and nephews ever; a LOLA (soon!); a family member and friend to you guys, and a full-time parent to three wonderful bratty kids who will always be my reasons for breathing.

thanks for all the well-wishes and prayers. i'm at home resting. I have been given huge doses of steroids. I can't have sick visitors, sorry. I'm super immunosuppressed. But I know that all of you have been praying for me, and I am very grateful.

once again, here's to another journey! Hopefully, a very very very long fruitful journey. =)

God bless us.