Gameplan

Stay at home and take care of Sam.
Make Sam's life as happy as possible.
Focus on the joys not the sorrow.
Pray, pray and pray that he doesn't suffer much.
Pray, pray and pray for a miracle ( if only he'll survive to sit in a wheelchair ).
Prepare for our goodbye.
When we do say goodbye remember that someday I'll see him again and get to kiss and hug him.

Still hardest thing to do is to let go...

How we feel...

Thank you everyone for your support and prayers. Thank you for sharing the pain and wanting to ease our minds but as Mark posted (and removed)...

"It's Sam. not anyone else. it's SMA, not something else. It's 18 months, and not a few years. We were explicitly told to expect death, and not just the "worst".

Of course we have faith, faith that God knows what his plans are for Sam, whether he takes him home early or not. Faith is not just about believing that God can, coz the truth is he always can. Faith is also about trusting that sometimes he won't, if that's His will, and faith is all about that: His will."

As my OB said, "Lord, Your Will. Nothing more, nothing less, nothing else."

I guess Mark must have removed his comment because he thought it sounded offensive of ungreatful. But its true. So I posted it without permission and hopefully he doesn't get mad... And I do hope you understand.

SMA

Short article on SMA. The reality of it. So scary but we've got to face it or we can't fight it. I want to give Sam a happy life though short it might be.

CHILDREN BORN WITH SPINAL MUSCULAR ATROPHY FACE A SHORT AND DIFFICULT LIFE. HOW THAT LIFE IS SPENT IS THE PARENTS' DIFFICULT DECISION. It is among the deadliest genetic disorders to strike children younger than 2. Yet most parents have never heard of spinal muscular atrophy....

***
Sam - Mommy and Papa loves you.

Its confirmed...

our 4 month old baby has infantile spinal muscular atrophy. The doctor says he has around 18 months to live. But i don’t want to lose hope. She says that some have managed to live till 16years with the help of a ventilator. Got to find one immediately. I need to think, to act and be busy. Its so unreal. Its just so unreal. Please pray for us. Please pray for Sam.

See more progress on: be a good mom

Please Pray for this.

My baby might have Spinal Muscular Atrophy. Please pray that h’ll test negative. We need all he prayers. I guess I do pray more often now.

See more progress on: pray more often

#11-15

Today i NEED to do this to lift my spirits.

11. 43 things
12. Sam’s little tongue flickering in and out.
13. Being alone in a peaceful place with huge trees and a clear sky.
14. Window shopping.
15. A steaming bowl of sinigang with red hot siling labuyo on fish sauce.

See more progress on: identify 100 things that make me happy (besides money)

Down

He has recurring pneumonia and has feeding problems. Symptoms are to long to list down and I’m feeling really down today. Got turned down for a job for the frst time in my life and I’m just really. Need to get back to the hospital but i needed to log on and write some in here to feel a little better. Not working very well but at least I’m thinking. People tell me maybe its because I should be with my baby. I guess they’re right. And in some way I am happy and a little relieved I wasn’t accepted so I can be with Sam. But right now I just feel down. Being rejected hurts (my pride) and makes me feel less confident. I feel like a housewife ONLY. Aw shoot. I want to cry but I can’t. I wan’t my baby to get well but he’s still sick. I don’t want them to give him electric shocks or to or prick him and all that stuff. I hate him suffering. I hate that I can’t help but think of the finances. I hate that I’m scared to be “stuck with my baby” when I know I want to be with him. I hate being contrary. I just hate this feeling. I feel down…

See more progress on: be a good mom

First Two...

1. My sister – she won’t tell me the avatar she used though. i guess she must have put in something like get married and have babies…hehe… or better yet—Be like my wonderful sister! Twonk.
2. Marseille – One of my friends said she’s doing 43things now i guess i also have towo find her here.

See more progress on: Get 43 people to try 43things!

Neopets

Its been some time since I last visited Neopets. All my 3 pets are dying but my stocks have soared. Hihi. Guess which matters more? Anyway there have been some changes and I really like Neopie Centrals' "new" look. Oh so pretty pretty... And Neolodge looks like a lodge!!! Love it!

i love 43 things

43 things is one of the best web communities I’ve ever joined. Its really uplifting, encouraging, fun and helps me to stay focused and to keep on trying to reach my few but important (at least to me) list of things I want to be able to do.

So i guess i should spread the love (like we did with the Ubuntu installers, thanks to a friend) and hope that people will also have fun with 43things.

So if you join 43things after reading this and seeing it for yourself please do tell me so I can start counting...

See more progress on: Get 43 people to try 43things!

Still am not swimming: My lame but valid(?) excuses

I’m so busy with my new baby and our struggling business that I neither have time nor energy to swim at all, not to mention no money too. Another problem of mine is my swimsuit. You see I had this great 2 piece gray with pink piping sporty swimsuit which I wore during my pre-pregnancy days. It fits me fine again but one look at my horrible stretchmarks would make anybody want to turn away (that is if they’re polite :p). And if you think that I should just buy a new one remember: new baby+sick baby+struggling business=no money. ^_ Am pretty sure we would get through this rough patch…i just hope it would be sooner than soon. I miss swimming!!!

See more progress on: swim regularly

#6-10

6. Sleeping in on rainy days
7. Watching action movies
8. “Talking” to my 3 month old baby.
9. Tidying up/organizing my desk.
10. Long and fun conversations with other new moms.

See more progress on: identify 100 things that make me happy (besides money)

Picking up my lazy butt...

If I were catholic the sin i would be most guilty of is SLOTH. I am lazy lazy lazy… I loooove to sleep and lounge around doing nothing productive. So I’ve got to kick my bad habits. I want to be a good mom. I’ve got to wake up when I don’t want to. Clean up when its the last thing I’d rather do. Plan OUR day, plan OUR week, plan OUR life.

“The most important thing she’d learned over the years was that there was no way to be a perfect mother and a million ways to be a good one.”
~ Jill Churchill

See more progress on: be a good mom

100 Things that make me happy (besides money) #1-5

Its about time I started this list… ^_

1. Chocolate Chip Cookies
2. Doing laps (very slowly) in a steaming swimming pool.
3. Reading books.
4. Tickling my hubby.
5. Clean sheets.

Part 2 … to come..

See more progress on: identify 100 things that make me happy (besides money)

Waaa..Huli sa Balita!!!

Bakit ngayon lang ako bumisita sa blog nyo? Huhu... At least mukhang mas huli pa sakin si Mark. Hehe. I won't tell him. Congrats to both of you!! Welcome to the ever colorful, wonderful and stressful married life. ^_^

Tama ata...

Got the link from Nikki's blog. Took the test. Antok na ko...

You are a Social Moderate (50% permissive) and an... Economic Liberal (33% permissive) You are best described as a: Centrist Link: The Politics Test on Ok Cupid Also: The OkCupid Dating Persona Test