« Ua maikaʻi koʻu hāpai mua ʻana, ʻokoʻa ka luaʻi ʻole a hiki i ke ono o ka mahina o ka hāpai ʻana.
Ua hoʻokō au i nā loiloi maʻamau āpau (hoʻāʻo koko, ultrasounds) a loaʻa iaʻu nā ultrasounds i kēlā me kēia mahina.
He 22 koʻu mau makahiki, a he 26 makahiki koʻu hoa, a ua mamao loa wau mai ka noʻonoʻo ʻana i nā mea a pau e hiki mai ana… A i koʻu wā hāpai ʻana, hoʻokahi wale nō mea i makaʻu iaʻu, ua hana wau. makaʻu i loko oʻu no ke kumu ʻike ʻole i ka ʻike ʻana i kaʻu hopena hōʻike "maʻamau".
Ma Iulai 15, 2016, ma 23:58 pm, ua hānau au i kaʻu keiki ʻo Gabriel ma kahi keʻena maʻi kokoke i koʻu home. Ua hauʻoli loa māua me koʻu hoa, ʻo kā mākou mea kupanaha liʻiliʻi i kali lōʻihi ʻia ma ʻaneʻi, ma ko mākou mau lima.
I ke kakahiaka aʻe, ua loli nā mea a pau.
Ua haʻi mai ka pediatrician maternity iaʻu i ke kiko blank, me ka lawe ʻole ʻana i nā mīkina lima, a i ʻole ka hoʻoponopono ʻana e kali i ka hōʻea ʻana mai o koʻu hoa: “He maʻi Down maʻi kāu pēpē. E hana mākou i kahi karyotype e maopopo ai. Me kēlā, haʻalele ʻo ia i ka nursery no ka mea pono ʻo ia e hele e ʻike i kāna kaikamahine ponoʻī. Haʻalele ʻo ia iaʻu me ka paʻa, hoʻokahi, hoʻopilikia ʻia e ka nūhou, e uē ana i nā waimaka a pau o koʻu kino.
I koʻu poʻo, ua noʻonoʻo wau: pehea wau e haʻi aku ai i kaʻu wahine? E hele ana ʻo ia e ʻike iā mākou.
No ke aha mākou ? No ke aha kaʻu keiki? He ʻōpio au, he 22 wale nō koʻu makahiki, ʻaʻole hiki, aia wau i waenakonu o kahi moeʻuhane, e ala wau i kēlā me kēia minuke, aia wau i ka hopena o koʻu kaula, ʻōlelo wau iaʻu iho. ʻaʻole e holomua!
Pehea e hiki ʻole ai i nā ʻoihana olakino ke ʻike ʻole i kekahi mea… Ua huhū au i ka honua holoʻokoʻa, nalowale loa wau.
Ua hōʻea mai koʻu hoaaloha maikaʻi i ka hale hānai, hauʻoli nui iaʻu. ʻO ia ka mea mua i ʻike e pili ana i ia mea: ʻike mai iaʻu me ka waimaka, hopohopo ʻo ia a nīnau mai iaʻu i ka mea e hana nei. ʻAʻole hiki iaʻu ke kali i ka hōʻea ʻana o ka makuakāne: haʻi wau iā ia i ka nūhou weliweli, a ʻapo mai ʻo ia iaʻu, ʻaʻole hoʻi i manaʻoʻiʻo.
Hiki mai ka papa ma hope koke iho, haʻalele ʻo ia iā māua ʻelua. ʻIke loa, hana ʻo ia i nā mea āpau i ʻole e paʻa i mua oʻu. Kākoʻo ʻo ia iaʻu a haʻi mai iaʻu e maikaʻi nā mea āpau, hōʻoluʻolu ʻo ia iaʻu. Hele ʻo ia i waho e hoʻomaʻemaʻe i kona noʻonoʻo no kekahi mau minuke a uē i kona manawa.
ʻAʻole hiki iaʻu ke kali, e hoʻokuʻu i kaʻu pēpē mai kēia keʻena olakino a hoʻi i ka home, i hiki iā mākou ke hoʻomaka hou i ko mākou ola hou, a e hoʻāʻo e haʻalele i kēia kūlana maikaʻi ʻole o ke ola a hauʻoli i nā manawa maikaʻi me kā mākou ʻānela liʻiliʻi.
ʻEkolu pule ma hope, hāʻule ka ʻōlelo hoʻoholo, loaʻa iā Gabriel ka maʻi Down's syndrome. Ua kānalua mākou, akā aia nō ka haʻalulu. Ua nīnau au ma ka pūnaewele e pili ana i nā ʻanuʻu e pono ai, no ka mea, ua ʻae nā kauka iā mākou e hele i loko o ke ʻano me ka ʻole o ka haʻi ʻana mai iā mākou i kekahi mea ...
Nā ultrasounds mana he nui: naʻau, renal, fontanelles ...
ʻO nā hoʻāʻo koko he nui pū kekahi, nā kaʻina hana me ka MDPH (hale keʻena no nā poʻe kīnā) a me Social Security.
Ke hāʻule hou nei ka lani ma luna o ko mākou mau poʻo: Ua loaʻa ʻo Gabriel i kahi kīnā puʻuwai (e pili ana kēia ma kahi o 40% o ka poʻe me Down's syndrome), he VIC nui kāna (intra-ventricular communication), a me kahi CIA liʻiliʻi. (ma ka pepeiao). I ʻekolu mahina a me ka hapa, pono ʻo ia e hana i kahi hana naʻau hāmama ma Necker i mea e hoʻopiha ai i nā "puka", i hiki iā ia ke loaʻa ke kaumaha a me ka hanu maʻamau me ka manaʻo ʻole e holo ana ʻo ia i ka marathon pau ʻole. ʻO ka mea pōmaikaʻi, ua holomua ka hana.
ʻO ka liʻiliʻi a he nui nā hoʻāʻo e alo! He "koa" kaʻu keiki. ʻO kāna hana i ʻae iā mākou e kau i nā mea i ke kuanaʻike, makaʻu nui mākou iā ia, makaʻu i ka nalowale. No nā kauka lapaʻau he hana maʻamau, akā no mākou nā mākua ʻōpio, he moʻolelo ʻokoʻa loa ia.
I kēia lā, he 16 mau mahina ʻo Gabriel, he pēpē hauʻoli a hauʻoli, hoʻopiha ʻo ia iā mākou i ka hauʻoli. ʻAʻole maʻalahi ke ola, ʻoiaʻiʻo, ma waena o nā koho lapaʻau i kēlā me kēia pule (physiotherapist, psychomotor therapist, speech therapist, pediatrician, etc.) a me ka ʻoiaʻiʻo e hāʻule ʻo ia i ka maʻi i nā manawa āpau (recurrent bronchitis, bronchiolitis, pneumopathies) no ka haʻahaʻa loa. ka nui o nā pale pale.
Akā, hoʻihoʻi mai ʻo ia iā mākou. ʻIke mākou i ke ola, ʻo ke olakino ka mea nui me ka ʻohana. Pono ʻoe e ʻike pehea e mahalo ai i kāu mea a me nā leʻaleʻa maʻalahi i ke ola. Hāʻawi kaʻu keiki iā mākou i kahi haʻawina nui i ke ola. E hakakā mau mākou no nā mea a pau me ia, i hoʻomohala ʻo ia e like me ka hiki, a e hana mau mākou, no ka mea pono ʻo ia, e like me nā keiki ʻē aʻe. “
ʻO Méghane, makuahine o Gabriel