Sam Update

We just found out that Sam was actually misdiagnosed. We have actually known about the possibilty for about a month now but didn't want to post anything until we were 100% sure. Results are out and Sam has what is called the Prader Willi Syndrome.

After thinking that my baby was going away for good and suffering with that knowledge for months, we were told that he actually has a different genetic defect. The symptoms are similar to SMA in the begnning but is pretty much the opposite of it when the the baby hits the toddler stage. Not only will Sam be with us for a long time, he'll also be able eat, sit, walk and do pretty much everything on his own. The crazy thing about the disease is that kids are usually tube-fed when born due to weak muscles and then gradually grow in strength until they can eat by themselves and not only that but they usually end up obese because they never feel satiated! Aside from that he is expected to have developmental delays or difficulties in almost all aspects. Upside of the delays is that we are getting to enjoy his small succeses so much. Very rare is it that you'll find parents who get really excited and proud everytime their 9-month baby sits up for a few minutes or manages to finish a half ounce of milk using the bottle. Things are definitely looking up.

For those interested in learning more about what Sam has just go to the Prader Willi Syndrome Association website for now. I'm pretty sure though that i'll be posting more about it sooner or later. Hopefully sooner.

Thank you so so much for all the prayers and support. Miracles really do happen.

Learning to sit with Granny and Mommy.

I can sit with just a little help from my mom. ^_^

I'm so tired!

For all the parents out there

I love 43things. The support from the community is so uplifting and has helped me feel less alone so many times. This is a reply to one ofmy mommy posts.


And a woman who held a babe against her bosom said, “Speak to us of Children.”
And he said:
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies, so He loves also the bow that is stable.
--written by Kahlil Gibran from The Prophet

Self-awareness

Makikigaya na rin ako. Am interested in finding out how others percieve me. Room for change. ^_^

My Nohari window.
My Johari window.

Had a hard time with my Nohari window. Ayaw kasi ng more than six! Hehe...

Same old wonderful world

Solomon once said that there is nothing new under the sun. What was true then is true now. What is felt now was once felt by someone else. Moms before must have loved as much as i love my baby.

As I reach out for Sam in the dark and feel his soft pudgy fingers, inhale its rather weird chocolatey smell and stop to pat him and murmur sweet nothings while he squirms in his sleep, I remember the first time I felt him pressing on my arm and, unable to move yet, saw the crown of his head. And once again I feel awe. I am humbled. Then I remember the times he's been hurt. All the needles and the tubes intruding his peaceful world, the tube mommy has to push down his nose despite the block, the occasional blood, the ever present cries and desperate pleading look on his eyes. He doesn't understand why mommy has to do it, why mommy has to hurt him and THAT hurts more than the pain. It pierces my heart as it does his. And I am scared for my baby, for all the hurt he'll have to go through not just from the needles but the pitying stares of strangers and all the other pain we have to go through just because its part of life. And so I pause. I look at him and kiss him. The fear melts away, sweet contentment creeps in and silences the voices, it lends peace to my heart. For now what is is enough.

Again emotions spring anew as i think of all the mothers who went through what I am going through, felt what I did -- joy, fear, contentment, happiness, confusion, pain, peace, sorrow, hope and love. Love most of all. I feel proud, I am proud that I am a mom. Imperfect as I am, I am proud that I now belong to that special club where membership means that you have to learn to be unselfish, to give up much, to sometimes reinvent yourself and to keep on improving so as to learn to love better and give even more. And I also feel grateful. I am so thankful for the priviledge of knowing what it is to love someone beyond anything imaginable.

However painfully brief or drearily long a child stays in one's life it still lends more color to one's life. One smile, one look, a single waft of your baby's scent and all the tears and struggles just go away. As the song goes... and i think to myself what a wonderful world.

Bow

You Have Your PhD in Men

You understand men almost better than anyone. You accept that guys are very different, and you read signals well. Work what you know about men, and your relationships will be blissful.

How Well Do You Understand

If only I used my knowledge right. But my emotion ALWAYS gets in the way. See mark I do understand you... making me more wrong?