Kwentong James

Galing kaming check-up and assessment ni James kahapon sa LaSalle Dasma hospital (ang layo!). Ni-refer kami ng isang co-alumni namin sa Christian org sa asawa niya doong ENT na expert on swallowing problems. Tapos nagkataong may clinic din pala dun kahapon yun devped namin, pina-schedule-an kami nung ENT with him para daw ma-assess ulit. Tagal na rin namin kasing hindi nakaka-consult dun. Sarap pala nung may backer, ang dali naming nabigyan ng slot!

Anyway, result nung assessment by both doctors, hindi advisable na pakainin by mouth si James due to several factors -- pangit ang coordination ng mouth, throat at larynx, saka meron pa rin syang head lag (walang control ang neck muscles). Kesa daw i-risk namin ang aspiration due to vomitting which may lead to pneumonia and other respiratory complications, tuloy na lang daw ang tube-feeding which can be forever na :(

Nagkwento pa si doc ng mga instances na may patients syang CP na tingin nya sinasadya na pabayaan ng parents. Yung tipo daw kaka-lecture lang nya na ingatang wag mag-aspirate ang bata tapos a week after nasa ospital kasi may pneumonia. Muntik na ako maiyak when he said "Siguro pagod na rin sila. I know gaano nakaka-frustrate at nakaka-fatigue ang pag-aalaga ng ganyang bata." Naman, nae-experience ko rin yung sobrang pagod, pero to think of doing something para matuluyan yung bata para matapos na ang paghihirap nilang lahat?! Ang sad naman nun! Bigla akong napa-dasal talaga ng "Lord, please wag mo hayaang dumating kami sa point na ganun!"

Sabi pa ng devped, "Ngayong 8 years old na si James, I'm sorry to say, ganyan na sya hanggang sa lumaki. Kasi ang peak ng development ng bata 6 years old. Lampas na sya dun. I hope I'm wrong pero kasi quad (spastic quadriplegic) sya at yun ang pinakamababa ang survival rate sa mga CP."

Alam nyo, habang nakikinig ako nun, I'm waiting for the feeling kung mararamdaman ko na para akong binagsakan ng langit at lupa. Pero wala. Tiningnan ko si Noy, kalmado rin sya. When we got home, tinanong ko sya. Pareho kami ng reaction, deep inside tanggap na namin. After all, 8 years na naming inaalagaan si James. Siguro din dahil andun yung deep faith namin kay Lord na lahat ito nangyayari for a purpose at kung ia-allow ng Panginoon na magkaroon ng miracle someday, kayang-kayang mangyari. We just have to trust in His perfect timing.

One thing that comforted us, sabi ng devped, ituloy lang namin ang mga ginagawa kay James kasi maraming bagay ang dapat ipagpasalamat pa rin, like wala syang contractures (stiff muscles and joints na hindi na maigalaw) dahil nae-exercise sa bahay, he's gaining weight kahit slow, saka he is a happy child inspite of everything.

We were advised that we really have to tailor our lives around a workable system wherein mabibigay namin ang best care for James kasi for the long haul ito. Which I think we're doing already na naman. Of course there's no other option for us but to love him unconditionally and search for other ways para mag-improve sya. So we're planning to consult rehab again for physical and occupational therapy home programs para ma-update ang current exercises niya saka balak namin pagawa ng customized wheelchair sa Tahanang Walang Hagdan kasi dun daw meron nun.

I'm just asking for your prayers mga friends -- that we may not be weary and always look at the bright side of things. Sus, ngitian lang naman ako ni James, ang saya-saya ko na ano. I just pray that Noy and I would be physically, emotionally and spiritually strong at all times for him.

Just sharing ...