Thoughts behind polite smiles

January 21, 2010

Let me take a break from editing Ate's MRI photos and write some of the funny answers I would have liked to tell people...

I have my polite smiles, but I do have some funny replies that would get them dumbstruck - so I just keep it to myself.

Someone tells me kindly, "You are the best equipped to handle this situation.  I know no one else who is stronger and more emotionally capable than you."
-- oh really, I can think of so many others!

Someone tells me kindly, "Perhaps it is your great faith that God chose you."
-- would you like to be among His chosen ones too?

Someone tells me kindly, "Oh look, she looks so sleepy."
-- oh she just finds you boring that's why.

Someone tells me kindly, "You can do it and handle this.  I know you can."
-- I think you can too.

Someone tells me kindly, "God won't give a cross or a burden you cannot carry."
-- Would you like the same cross?  And oh, she's not a burden.

Someone tells me kindly, "She's a blessing in disguise, you'll see."
-- I can see clearly she's not in disguise.

Of course I know all mean well.  And it is their way to try to lift me up.  And they do, when I think of the funny replies in my head behind my polite smiles.

What to do... How to... John 9:2-5

January 21, 2010

Been reading on Glenn Doman's books and excited to use them.  Must get back to preparing the materials because can't afford to buy all the items.  Luckily was able to borrow some from Oma's friend.

Still reading the book but Glenn Doman quoted from the bible and it is now my battle cry!  Ate's battle cry!

John 9:2-5

His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world."

Glenn Doman only quoted verse 2.  I immediately looked for a bible to find the rest of the passage.  I can feel it!  Ate is going to be the miracle we all need to see to believe and increase our faith in God!  Oh how exciting it will be when the day finally comes!

Mom's session

January 18, 2010

Oma cried again today while Ate had an attack.  Wowo cried after he spoke with KuA because KuA cried to him.  KuA read online about Ate’s condition and what made him cry was the line “… some even make it to their teenage years.”

Ome asked me what is the worst scenario that I have thought of.  Well, if she doesn’t survive infancy.

Triccie Sison, Oma’s friend, came this afternoon.  Oma needed to talk to her more than I did, I think.  Oma did most of the talking and I just sat and listened.

What concerns me… well, when I saw mom and dad cry today… was that they are too old to carry such a heavy burden.  They both said they feel twice the sadness and twice the burden because they weep for Ate and they weep for me.   I worry because at their age, they should not worry.  The emotional burden may take it’s toll on them.  I want to tell them not to weep for me.  Not to pity me.  Because I do not feel any burden.

Oma and Wowo said my whole life is consumed by watching over Ate.  Well, I know that one day I would have more time for myself, more time to get myself a decent haircut, more time to go out with friends, more time to help others in greater need, more time to do things I like to do.  I know I will have those days.  But I am quite happy being with Ate 24/7.  Or almost 24/7.  I like being with Ate.  Although Tita Triccie said I should have a life of my own.  Yes I know, but for now I just cherish moments with Ate.

Earlier Ate was irritated with me because I was exercising her.  She had some physical therapy.  It was a little frustrating on my part because she couldn’t seem to do what she was able to do before.  That’s because we had a week of not doing any therapy sessions.  Now I know better.

I also noticed that when her mind is busy and stimulated, her seizures are less.  Or that they tend to stop.  Just earlier I saw two mild spasms and very quickly I got a flashlight and asked Ate to follow it.  And I moved her arms and legs cross-lateral while she lay on supine.  And the seizure was gone.  And since her seizures happen during her waking or sleeping moments, then I guess that is when her brain is least stimulated or least busy.  Hmmmm…. It just confirms more Glenn Doman’s hypothesis that a seizure is the brain’s heroic act of self-correcting itself.  It makes sense to me.  I don’t need scientific terms to back it up.  I just believe it.  And as the mom of Ate, I am the best doctor to Anya.

Sheesh.. our doctor (although she is very helpful), like other doctors, has no cure – just treatment of the symptoms.

Am a little excited now to do Bits of Intelligence cards on Ate.  Because she was looking at the faded photos of the ones I flashed her.  I need to do now the big red words to see if she is really looking at the words in the Baby Can Read DVD or if she’s just looking at the bright lights.  Well see…

Feast of the Sto. Nino

January 14, 2009

5:30pm anticipated mass.  It’s the first time hubs and I heard mass without Ate in tow.  I feel comfortable leaving her with Oma and Wowo while we’re out.

We’ve been living with Oma and Wowo for a week now.  It should have been just for a day while hubs is at work so I won’t be alone with Ate.  And then I’d go home at night.  But hubs has been going home late since he had several meetings in the evening.

It’s a comfort to see Ate loved by so many.

At mass, the priest talked about how we should be like children – trusting and giving full abandonment to God.  Young children trust their parents completely and abandon their lives to their parents.

Oh how I shed tears during the homily.  How annoyed I was!  How angry I became!  At first I was angry with the seizures and the medical condition of Ate.  I was angry that before we left the house for mass, Ate had an attack.  And before the attack, she was showing me little smiles.  At least she looked like she was smiling at the toy I was waving in front of her.  And then the seizure took her away from me.  She was there!  Present!   And she had to have an attack!  I know she trusts all those who love her.  And being a helpless child (with or without seizures) she gives full abandonment to us.

Lord, ako na lang!  Ako na lang bigyan mo ng seizure.  Ako na lang bigyan mo ng brain malformation.  Don’t let her suffer.  Her body gets tired!  Bwisit!  Bwisit kayong lahat!  Bwisit ka Lord!  Punyeta ka!  Tang-ina ka…  Am sorry Lord.  I am angry.  Please allow me to feel anger.  She is innocent.  Life is not just.  There is injustice in her life.  Am also sorry Mama Mary pati ikaw na mura ko.

After mass, a few minutes at the Blessed Sacrament did me some good.  Okay Lord, I’m listening.  Tell me.  What do I need to hear?  God told me loud and clear, and very quickly, only 2 sentences because He knew I wanted to get home to Ate as soon as possible in case she needed me.

There is no Joy without Suffering.  There is no Suffering without Joy.

Am not sure which sentence came first.  But how I typed it up is most likely how it came to me.  Joyous Suffering?  Suffering Joy?  Are there such things?  Okay fine.  I know that from my  High School upbringing.  After a while the word suffer soon disappeared.

Ate does not suffer.  I do not suffer.  At least not in the way it is defined in the dictionary.  There may be pain.  But it is hard to explain.  She willingly goes through the pain with joy in her heart.  How can I tell that?  She lives to serve God and so do I.  I need to go through this with joy in my heart that this gives glory to God.  And if I believe and know that, then Ate will believe and know that.  For now, much of Ate’s fate lies on my Faith.  Or sometimes, it’s the other way round.  Ate’s pure Faith guides me.  Can she have pure Faith?  She cannot reason.  I know she can think, she just can’t express herself.  I need to have Faith.

Tonight as she slept, I asked the Lord to increase my Faith.  Give me strength and courage to carry on your duty.  Help purify me so that I can be a better servant.

Feeling a little better

January 12, 2010

10:40pm  Ate is now asleep and I just finished writing in her notebook her activities for the day – in other words, her seizure log book.  I write in it when she wakes, sleeps, eats, takes her medicine, does some physical therapy and number of spasms per seizure cluster.

Today wasn’t such a good day for Ate.  She vomited twice after drinking breastmilk latched on.  She had 3 big attacks that involved yelping.  She had a fever which we brought down by dipping her in a basin of warm water and applying cold compress on her head after.  During the fever she had sudden quick spasms.  She was breathing quite fast today perhaps to get more oxygen in her brain and to get rid of the lactic acid in her – that’s what the doctor and the test results say.  I tried to do some semblance “masking” the Glenn Doman uses although it wasn’t the real thing.  It was just me and Ate under a blanket for a minute.  She hardly did any of her therapy sessions since she was sleeping most of the time.  Or she was hungry.  I think it’s the meds.

Today I also finally got to go to confession.  Oma was with me and Ate in the Woodrose chapel.  Reflecting on what happened earlier, my earlier thoughts were reinforced once again – that Ate suffers for my sake.  I was in the confessional and right at the moment Fr. Magsino was giving me my penance, I heard Ate yelping outside.  She’s taking on the penance of my sins.  I did tell that to Fr. Magsino during my confession.

I took note of what Fr. Magsino said.  And although I “inherently know” all that he said, I needed to hear it again.  And to hear it from a priest, when I am in the right disposition, in the confessional and with God’s grace working.  First he said it is difficult to understand why an innocent is made or allowed to suffer.  We must accept it for it is God’s gift.  Ate is God’s gift to my family.  Second, Ate has a burden but it is a burden she can handle because God says so.  Naturally, as Ate suffers and carries a burden, so do we her parents.  We would need more prayers, much faith and abandonment in God.  Needless to say, we need patience as God unfolds his great plan for Ate.  God is in full control and Ate’s life is in His hands.  We have to do what He wants, follow His plans for her.  After all, God knows what is best and we simply assist in carrying out His plan.  Third, we should pray to God to increase our faith, to entrust our lives to Him, to make us strong, to fulfill duties given to us and to be at peace doing so.  Most importantly and strikingly, Fr. Magsino said that only good can come out of this.  This should bring me and my husband closer to each other and closer to God.

Quite simple and basic right?  But it was said to me at the right time, the right place and by the right person.  And I got all these before Ate had her attack.

I guess that’s what it’s been a while since I last wrote on this.  I was mostly lost, angry, in denial, angry, depressed, sometimes a felt numb.

Mom described me as stoic when she told dad about Ate after Dra. Fojas gave us the harsh probability.  I wouldn’t call it reality.  Let me call it, the harsh statistics.  Because that’s where they base their prognosis.  I had to hear it from her… severe mental retardation in all aspects of development… the whole brain and not just part of the brain… may not survive infancy or may live to adulthood as a disabled… don’t bring your hopes up for a normal life for her.  I thought I would break down so I brought Oma along for strength.  Instead I find myself calmly asking her questions as she threw these words and phrases at me.  Oma was in tears and was close to breaking down.

I have no time to cry.  My daughter needs me.  Some say it’s not good because I don’t let it out.  But I let it out in other ways.  People have different ways of letting it out and handling it.  I'm not even sure if I am handling it.

Should I resign to accept the statistics of it?  Should I fight and push her to her limits believing she needs and wants it?  Does her happiness depend on it or does mine?  Ate wants me to do it for her.  Ate needs me to help her develop to the extent she can.  She needs me to believe she will get better.  I need to believe she will get better.  I want her to be happy.  And I guess she wants what will make me happy.  Well, definitely spending a lot of time with her will make both of us happy.  And spending time with her, doing the therapy, bringing her to Glenn Doman will make both of us happy.  I will not be afraid to hope.  11:20pm