Welcome to Holland

Poem: “Welcome to Holland” by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

My Holland - Spring 2012

 

 p/s: I think Holland is great :). Its definitely not the same as Italy, but it's still equally beautiful if not more. Plus I looove tulips :))

 

Education

Harini ada protest besar2an seluruh Ireland under Special Needs Parent Association untuk membantah keputusan kerajaan nak mengurangkan LAGI budget for resource hours and also SNA (special needs assistant). Mama x join la, just kirimkan gambar jer..
Semenjak ekonomi merudum 3-4 tahun lepas, dah lebih separuh budget untuk golongan kurang upaya yang dah dipotong (actually lots other area pun kena potong jugak). Sebab tu lah bantahan di buat besar2an this time.

The good thing is, semalam minister dah announce yang diorang dah tarik balik keputusan untuk budget cut tu. But we decided to go ahead with the protest today sebab currment SNA n resource hour (time for one on one teacher-student) masih tidak mencukupi. So we'll see how it goes..

Actually future education for Z is the strongest reason why I want us to continue living here. Kalau ikutkan hati, dah lama dah nak balik Msia. There's so much different with the system here (although early intervention is quiet dissapointing) and i believe Z will got much more opportunity when he started formal education later. So there's to HOPE.

Z's typical weekly appointments

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Azmeer and TV3, please apologize to the Down Syndrome kids.

Petition by iPetitions

Please click on the icon above to sign this petition.

The Petition

The composer Azmeer and TV3 to apologize to the disabled community in general,especially Down's Syndrome person,child and parents on his comments towards a group performing in a TV3 Show,his comments are " like a buch Down's Syndrome idiots" or in Malay "budak-budak Tapaw ni bodoh-bodoh Down Syndrome" .
We want them make a public apologize thru press and TV statement.
Down Syndrome community have the right to be respected and cared about. We stand together in stating that our kids are educated, smart enough,able to do chores and have the ability manage themselves even though they are mentally challenge. We want the Malaysians to know that the education level has changed so much and we worked hard in taking care & made sure they are given the same chance like the others. We deserve some respect . Any impropriate act and words should be blame on the lack of self etiquette and manners.


Mama: Malaysian still far behind in term of sensitivity and awareness toward people with disabilities!

Sleep Problem / Apnea

My Sleeping Angel..

 

Sejak lepas operation haritu, mama notice Z selalu bangun malam. Well, dia takde lah bangun and wide awake gitu (ada few occassion jugak actually yg dia bangun n main2), mostly dia cuma terjaga and then 'humming' toss n turn and trying to get back to sleep. at least 2-3 kali jugak tetiap malam.. kadang2 more than 5 times! (memang zombie la mama di siang hari)

Kalau mama cepat2 tepuk2 dia, dia akan tido balik.. tapi kalau mama pun tak sedar, he could end up awake the whole night! Sebelum operation pun dia memang selalu turn n toss around masa tido. orang kita cakap 'tido buas'. Tapi dia punya 'buas' tu memang constantly. unless kalau dia betul2 penat. 

Cikgu pun selalu komplen dia nampak penat dan mengantuk di sekolah. Masa awal2 tu mama relatekan dengan his bowel problem.. but then bila dah buat operation, things just gotten worst.

Sleep apnea is very common in Down Syndrome. Tapi mama tak rasa keadaan Z chronic sangat.. but since we had appointment with his Paed today, mama mention jer la.. dia kata kalau sleep apnea ni selalunya tidur berdengkur, sometime the child will have to sleep in sitting position so they can breath. Z takde lah berdengkur sangat.. kalau penat jer.. he also did not sleep in sit up position. Tapi mama notice he does strecth his neck while sleeping. Always. Sebabkan dia tidur meniarap, Dr Murnaghan kata maybe that's how he try to overcome his breathing problem. Hmmm... Pastu kalau dia tidur terlentang, mesti dia akan tersedak air liur. Kadang2 sampai menangis la..

Dr Murnaghan will refer us to ENT specialist to do a check on his throat. Kalau his airway kecik, kena la buat sleep study.

Dr. Murnaghan tanya jugak, masa kat hospital tu diorang tak noticed ke Z selalu bangun malam.. Masalahnya nurse datang every hour, so every hour lah Z terjaga.. Lagipun dia on a lot of pain killer, memang keje tido jer la.. Tapi bila difikirkan balik, mama baru teringat, masa Z kat hospital tu, memang heart rate dia (when he's asleep) terlalu tinggi/rendah. Asik berbunyi jer heart rate monitor tu.. first few days tu kena guna mesin CTG utk monitor. Sampai kena buat ECHO lah.. But his heart is perfect. Pastu lak, memang dia susah sangat nak tido time tu.. kadang2 sampai 2 dose nurofen nurse bagi, tak jugak tido.. Dia memang tak boleh bergerak sangat pun sebab sakit kan.. Hmm.. Hmmm... Now that I've read more about sleep apnea and its effect, the more I am getting nervous about it.. Mesti lambat lagi nak dapat appointment pun kan.. sigh...

Anyway, for the last few weeks.. (2-3 minggu jugak) mama bought few Essentials Oils. One of it call 'peaceful' which could help with sleep problem (and anxiety). Sejak pakai EO ni mama perasan he is sleeping better. But still there were nights yg dia akan bangun 2-3 kali.. tapi ada jugak malam yg Z tak bangun langsung! at least some improvements la.. I will blog about EO in details kalau ada masa :D

World Down Syndrome Day 3:21

Happy Down Syndrome Day Everybody :D

Who I Am

Majlis Kasih Mesra

Ingatkan dah malas nak update, tapi sebabkan baru keluar newspaper, kena la jugak update kan.. Bukan selalu mama dan Z boleh masuk paper nih :p 

Majlis ni berlansung masa kami balik M'sia November lepas. Kebetulan tarikh yang terpilih adalah 24 Nov. Dapatlah kami menyelit sekaki sekali hehehe.. Group ni agak baru sebenarnya. Tercipta pada mulanya pun sebab nak plan majlis ni lah. Tapi ahli-ahli tu most of us berkenalan dalam 4-5 bulan sebelumnya la..

BH 22 Jan 2013. Thank you to kak Lailetaty.

24 Nov tu juga merupakan hari terakhir kami di Malaysia. Flight balik Dublin pukul 8 malam, pukul 6 dah kena ada di aiport. Majlis start pukul 1 hingga pukul 5, tapi pukul 3 kami dah terpaksa mengundur diri. Sedih nak tinggal sebenarnya, apa nak buat kan.. Itupun kami dah lambat sangat dah, nyaris2 tertinggal flight. bayangkan, pukul 7 lebih baru dapat check in. Jalan jam teruk, sampai pukul 6 lebih dah. Sekali tengok punya la ramai orang beratur nak check in. Nasib baik ramai lagi yang lambat haritu, so flight delay sikit. Tapi memang kelam kabut ler jadinya..

Berbalik pada majlis tu, kami sampai pukul 1 lebih dah sebenarnya. Malu2 jugak sebab first time jumpa kan. Tapi alhamdulillah semua ahli sporting sangat. Macam dah lama kenal jer.. Z sorang jer yang kurang sporting. Masa sampai dia tido, bila bangun tu tengok orang ramai pulak, apa lagi melalak jer la.. hihihi.. Baru semua orang tahu kepakaran Z kan? ;p

hihihi..kembang kempis kejap hidung mama. Tengok la hero yang tengah melalak tu.. :p

Sedih betul masa nak balik tu. Tak sempat nak join activity. Tak sempat nak ber group photo. Tak sempat nak ber huha huha. Hopefully dapat jumpa lagi di lain kali. Tapi mesti lepas ni diorang ber geder2 tanpa mama dan Z (jeles nih waaaaaaaa!). Apa-apa pun, mama tetap menyokong segala aktivity kumpulan ini. Semoga kita terus berhubung dan berkongsi suka dan duka dalam membesarkan ahli-ahli syurga kita. Sayaaaaang korang ketat2!

Some Things Are Better Left Unsaid

To tell or not to tell..

Z has a mild case of DS, his conditions are not that apparent. His own neonatal team didn’t even realized it for the first week. Normal doctors (read: not pediatrician) hasn’t had clue that he has DS if we did not mentioned it. And even most of my friends are doctors/surgeons, none of them ever mentioned or have any query about it. I was kind of hoping that people will know it straight away by looking at his face. But I don’t think it happening any time soon.. maybe in future, his features & symptoms will getting stronger where people can easily make their own assumptions, but for now it is up to us whether we are to make the announcement or not.

For the past few months, this issue has been bugging my head constantly. There are part of me that just wanted to scream out loud telling everybody about my baby conditions. No, not for seeking sympathy, but I just feel that people should know and should accept him the way I accepting him. Also, I feel like I’ve been living in a lie pretending that everything is alright, when it is definitely not. I am worried that people will think I still not accepting the fact that my son is different from others by hiding it. To be honest, I really wish I could talk about it freely.. I want to express my worried to others. I want to deal with it more openly..

But… I am not sure about others acceptance. Will they treat my son differently? Will they react differently towards me after they knew the fact? I always believe that my friends are all educated enough to react positively on his conditions. But at the same time, I also worried that they will feel sorry for me.. they might feel uncomfortable talking about the issue and even worst they might avoid talking to me just because they don’t want to hurt my feelings.

And today, it is proven what I am worrying about is in fact true. As we were having our normal morning break, we were talking about pregnancy and motherly instinct on their unborn child. 1 of my colleague ‘A’ make a shock and honest statement. She said, when she was pregnant, she was so worried that her baby will have a ‘problem’ because at that time our colleague ‘B’ (who happen to be away today) constantly talk about her special need child (which I will story later). This happen 7-8 yrs ago. And she still think that the story she heard from B really affecting her feeling at that time. Then my other colleague ‘C’ who is currently pregnant also express her concern about the stories she heard from her friends about DS baby which also make her felt uncomfortable. An how she wish she don’t have to hear all those sad story. And there I am.. sitting in the middle of their conversations listening carefully to what they said while part of me want to jump out and say ‘ hey my baby has down syndrome too!’ but instead, I just stood there.. nodding my head.. thinking of how this conversation has given an answer to my very own situation.. while of course trying to hold myself from crying..

I am not making any judgment here. I am fully aware, they are not against any of those special need childs. Its more about their concern and sympathy towards those children and their parents as they said. Especially when Alan (B’s Son) who is currently in the hospital due to failure kidney. To be honest I don’t really know Alan’s exact conditions as I was worried I’m going to hurt B’s feeling if I asked about him (<--noted already="" and="" bed.="" before="" br="" but="" degree="" having="" her="" his="" informed="" life="" me="" most="" of="" on="" retardation.="" she="" some="" son="" spending="" that="" the="">
See, from my very own experience, long before I have Z, I also have the same feeling. No, not feeling of disgusting or anything against disabled / learning difficulties people.. but more towards sympathy and uneasiness. I just don’t know how to react. I think because the lack of knowledge that make me react that way. I might not felt the same way towards people with DS. The only reason is, 1 of my niece (15 years old) also has DS. Yes, Z is not the first one. In fact, he is the third in our family. My youngest aunty ‘maksu’ (40 years old) also has DS. (NO this is not genetic transfer or keturunan. We have confirmed that from Chromosome study we did before.. it just happen randomly.. and our family just happen to be the chosen 1 :)). So, back to the story, because I already have experience with people with DS, I normally wont have the same uneasiness feeling towards them, unlike when I have to deal with any other type of disabilities. Just when I have my own son that I realized how important is this knowledge. I guess, only when you experience it yourself then you will understand it more right?

So, as a conclusion, NO, I don’t think they are ready to hear the truth yet. And not just my office mates, but the same goes to my real life friends. I am sorry my dear friends.. it never be my intention to hide such a news from you guys, I just don’t think it is necessary YET to tell. Unless of course if any of you asked, then I will definitely not going to hide it. Hope you guys will understand the situation we are facing at the moment. I know every person will react differently, and I know there are some of my friends that deserve to know.. but it just not the right time yet.. sooner or later you will eventually know. And if by chance, any of you ever bumped to this blog, please please please be remember that we really value our friendship, therefore we don’t want you guys to feel the unnecessary burden or uncomfortness. We treasure our journey with Z and we entirely happy with his present, and for that reason, we really appreciate if you guys will accept him just the way he is.

p/s: at least I have this blog where I can freely share my feelings and concern…

First pead visits (Ireland)

(also Z's first visits to papa's work!)


On the 23rd March, instead of going out for mama's birthday treat, papa has managed to book a 'formal' appointment with Dr Justin Roche (Pediatrician Consultant) in his hospital. Finally Z is on Irish's Health Service record!

After about 4 months without proper pediatricians' care, Alhamdulillah he is as healthy as any normal baby :). of course there is delayed in his physical developments, but Dr Roche himself quite surprise with Z current development based on his previous history.

There are few issues being discussed. Since we are moving back to dublin soon, meaning that we will have to find another paed for him (oh, i wish we can carry on with Dr Roche, he is soo nice!). Dr Roche has few friends in Dublin that he has recommended to us. He also has contacted them for the follow up and all paperwork will be prepared by his staffs. Hopefully by the time we back to Dublin, we dont really have to wait that long to meet another paed. and most importantly, we can start the physio and speech therapy soon.

He also ordered another blood test to be done. Actually we still havent got the chromosome result from malaysia, (although its pretty confirmed by now..) and we plan to meet the Malaysian paed when we're back in May. Anyway, the result here will be ready in 3 weeks (in malaysia it took 2-3 months before the result finalised + 2 month waiting just for the blood being taken!!!), so he suggested we just done it here. apart from that, he also need to do blood count. as mama has Hb E Trait (carrier for thalassemia), highly likely Z will be the carrier as well (sorry sayang....)

so, z's tiny hand being poked again yesterday.. but this time not so much crying. they have a 'magic' spray to numb his hand. so, yippiee! he only cried towards the end of the process.


Lotsss of questions being asked to Dr Roche, but one thing for sure.. there are lots of uncertainty... whether he can walk, whether he can talk, whether he can learn and most importantly whether he will have any health problem in future.. only time will tell.. according to Dr Roche, the first 3 years is crucial. all development has to be monitored closely and mama promise, mama will try my best to provide the best for you.. and 1 thing we definitely sure, mama n papa love you sooooooooo muchh sayang!

Chromosome Study

27th Sept lepas we had appointment for chromosome study (for Down Syndrome). Diorang amik sample darah Z^chary utk di hantar ke Lab.

Kesian anak mama, meraung2 masa kene ambik darah tu.. bukan aje anak, maknya pun meleleh2 air mata jugak dengar anak meraung.. huhuhu.. Z^chary ni bukan la jenis yg suka melalak.. dia nangis pun bila bangun tido kalau dah lapar sgt jer.. lebihnya setakat merengek2 skit2 tu ada la.. so, bila dia dh meraung2 tu, mmg sakit sgt la tu kot.. mamanya try jugak nk be strong, alaa, stakat ambik darah jer tu.. tapi lepas dgr dia meraung2 tu, aduss..berderai2 air mate… huhuhu… siannn anak mama nih..

:: Mamaaa.. tangan sayee sakit ni.. huhuhu.. ::

Back to the study, the result will only be in after 2 months.. tak sabar rasanya kami menunggu. sekarang everything is so blurry.. reason is because we got different opinion from different peads. even paed2 yg dekat HSB tu pun bercanggah pendapat. some of them sgt confident Z^chary has DS, tapi ade gak a few yg ckp no.. last 2 weeks i went to get another opinion from pead specialist at KMC, dia pun ckp NO. he thinks Z^chary is too active for DS. plus from his examination, mmg the signs are not so clear. kalau ada pun the extra chromosome, it should be very mild..

ntah la.. sbb tu i really looking forward for the result. not that it will change anything on my feeling toward him, i just want confirmation so we can plan for his future. lagipun i havent mentioned it to anybody except my immediate family (n beberapa kerat blog readers). bukan nk rahsiakan, tapi tatau nk ckp mcm mana sbb kitorang pun blom confirm lg.. *sigh*

of course i always pray that he will be ‘normal’ (what ever the definition is) but at the same time, i want to be prepared.

Z^chary Aiman adalah amanah Allah kepada kami. Kami akan tetap menyayangi dia biar apa pun keadaannya. Dia sangat sempurna di mata kami. InsyaAllah, kami akan berusaha memberikan yang terbaik kepadanya.