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Beberapa hari belakangan aye rasanya capeee banget..

cape kudu bolak-balik ke beberapa faskes.

cape ngantri.

belom lagi ngeliat rujukan lab yang bikin deg-degan.

pokoknya cape.

pada saat cape-capenya, ada yang “nyolek” aye..

image

ibu ini awalnya duduk sendirian di seberang aye. dia sibuk membersihkan tumpahan susu di bangku penumpang. ngeliat raut wajahnya yang tulus, susah si nggambarinnya- yang jelas dia ga bete kaya aye, dan sosok anak dalam pangkuannya, aye jadi pingin ngobrol ama ni ibu.

*aye jalan ngedeketin tempat duduk si ibu

Ibu X (I): jangan duduk disini mba, kotor..*masih aja ngelapin bangku yang alhamdulillah dilapis plastik

Aye (A): gapapa bu..dah dibersihin ini..

setelah agak ngotot dikit, akhirnya aye duduk juga di samping si ibu.

A: maaf bu, anak ibu (kena) CP?

*walopun ngomongnya dah diusahain sealuus mungkin, tetep aja abis itu rasanya mo nampar diri sendiri. kalo orangnya tersinggung gimana hayoo

cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.

http://cerebralpalsy.org/about-cerebral-palsy/definition/

I: wah..mba kok tau sih? mba dokter ya?

si ibu jawabnya tuh pake mata yang berbinar loh, ga ada ekspresi tersinggung or malu.

A: bukan kok bu..

An individual with cerebral palsy will likely show signs of physical impairment. However, the type of movement dysfunction, the location and number of limbs involved, as well as the extent of impairment, will vary from one individual to another. It can affect arms, legs, and even the face; it can affect one limb, several, or all.

Cerebral palsy affects muscles and a person’s ability to control them. Muscles can contract too much, too little, or all at the same time. Limbs can be stiff and forced into painful, awkward positions. Fluctuating muscle contractions can make limbs tremble, shake, or writhe.

Balance, posture, and coordination can also be affected by cerebral palsy. Tasks such as walking, sitting, or tying shoes may be difficult for some, while others might have difficulty grasping objects.

Other complications, such as intellectual impairment, seizures, and vision or hearing impairment also commonly accompany cerebral palsy.

http://cerebralpalsy.org/about-cerebral-palsy/definition/

lalu obrolan kami pun mengalir (sayangnya aye kagak sempet nanya nama ibunya or si ade)..

ternyata si ade yang berumur 3,5 tahun juga menderita epilepsi.

Epilepsy occurs in 15-60% of children with cerebral palsy; however, its clinical course is not well defined.

(Wong, et al., Epilepsy in Children with Cerebral Palsy, Pediatric Neurology, 1998)

dan ternyata, si ade punya abang berumur 10 tahun yang menderita ADHD…

Attention deficit hyperactivity disorder (ADHD) is one of the most common childhood brain disorders and can continue through adolescence and adulthood. Symptoms include difficulty staying focused and paying attention, difficulty controlling behavior, and hyperactivity (over-activity). These symptoms can make it difficult for a child with ADHD to succeed in school, get along with other children or adults, or finish tasks at home.

http://www.nimh.nih.gov/health/publications/attention-deficit-hyperactivity-disorder/index.shtml?rf=71264

Allahu Akbar, Masya Allah.. ga kebayang kalo aye di posisi si ibu.

Di satu sisi harus selalu menjaga si Ade -yang bahkan untuk duduk pun kesulitan- kontrol rutin untuk mengambil obat n ngeganti selang utk susunya (aye kagak tau namanya) sepekan sekali. belum lagi terapi wicara. belum lagi harus mencari obat ketika stok di rumah sakit rujukan habis.

Di sisi yang lain ia harus konsentrasi menjaga pula si abang-yang bercita-cita menjadi masinis- agar bisa mengikuti alur akademis di sekolah. si abang memang bersekolah di sekolah inklusi, namun pendampingan hanya dilakukan  sepekan dua kali.

terbayang si ibu di rumah sibuk memasak sambil menggendong si ade yang tiba-tiba mengalami kejang, sedangkan si abang sedang memanjat-manjat lemari..duh!

maka saya pun lantas merasa malu untuk sekedar merasa cape..

***pengikat ilmu. pengasah otak. pemoles hati***

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