我今日見咗一個朋友嘅朋友,聽咗佢嘅故事。
好想可以做啲嘢幫佢。
她於兩年前生了一個好得意嘅女,但到七個月時一次高燒,發現她患了一個十分之罕有嘅heart defect.
Anomalous left coronary artery from the pulmonary artery (ALCAPA) is a congenital (present at birth) heart defect in which the left coronary artery arises abnormally from the pulmonary artery.
要做open heart, 手術,但因為之前七個月個circulation 都錯了,雖然做了手術但部份 heart tissue 都壞死了, 現在每天還要食四次每次五粒藥.
當時住了醫院幾個月,要用feeding tube 餵食,BB 時全身都插滿線和喉
佢哋兩夫婦都無返工在家照顧小朋友。
但savings 都快用晒了,社工卻說他們不qualify 住公屋。
因為之前這些事情,現在發展比其他同齡小時慢,還未懂得說話或行路。
But i think more than that, it's just mentally very draining for them both, 外邊的世界無人明白,媽媽本來是一個對很多興趣,做傳媒工作的人,後來於倫敦學插花,但過去一年基本上把所有時間都花在湊小孩子和覆診等等。當然也會令夫婦關係時不時有緊張的時候。
BB 住醫院的四個月,每天也要去,自己不去的話,沒有人會有時間慢慢幫她餵食,結果常常嘔到一身都係。
面上tube feeding 的膠布,要peel off 時留晒血都照會peel.
媽媽說,因為自小在接受種種治療的原因,今小朋友十分之驚人, 令呢對爸媽跟世界越來越遠。
after hearing her story makes me really want to cry, not because i feel bad for her daughter's unknown future etc.
but more for how lonely and difficult it must be for her parents (the caretaker)
佢應該crowdfunding, 我話無理由無人suggest 過。
but i understand how it's hard for her to
1. have time to organise
2. 佢未衝破 到要開口問人幫手呢個心理關口.
不過我明白頭一年都係好困難,it's the phase you need to accept that "lost" and "new norm" 社工/其他罕有病患嘅病童家長話,通常要三年時間才會好一點 。
(well given if your kid dun have any new serious worse diagnosis)
醫生說現在都是邊食藥,邊做training, 再觀察看看。
照顧病童真的很辛苦 ,但她的女兒樣子十分之可愛的,希望一切會變好吧。