Sep 24, 2010

How I made peace with having a kid who has special needs

Semalam mencari-cari kembali pautan ke satu entry di blog Love That Max milik Ellen. Entry ini adalah antara entry yang paling saya gemari, malah blognya juga adalah antara blog yang saya sangat suka singgahi walau pun hanya sekadar sebagai pembaca senyap. Bait kata-katanya yang sangat memberi semangat tanpa perlu membuai rasa seorang ibu kepada seorang anak istimewa seperti saya.

Benar.. saya salah seorang ibu yang tidak pandai menzahirkan perasaan sedih, gusar serta susah hati. Saya akui saya tidak mampu membawa pembaca saya dibuai perasaan kerana objektif blog ini bukan begitu malah diri saya sendiri bukan begitu. Saya suka membaca sesuatu yang memberikan inspirasi & semangat. Malah berharap akan menjadi orang yang memberi insprasi kepada orang lain.

Berbalik kepada entry blog Love That Max, di sini saya salin dan tampal semula isi entry itu. Ia lebih kurang sama dengan apa yang sedang dan telah kami (saya & suami) lalui & lakukan:

Ken, a really thoughtful (and funny) writer over at Blogzilly who's dad to Bennett, wrote a comment yesterday that really moved me. It was in response to my flip post on what Max would say if he had more words. Ken wrote:

"I hope to be where you are someday. In my present state of mind I would be focusing on what my son can't say. Your post shows there is hope to be in a better place and instead have some fun with it and be in a better place."

This is something I've been meaning to talk about. Because here's the thing: I know I seem pretty well-adjusted. I am. I know I seem pretty upbeat. I If I had started this blog when Max was first born, or even a couple years later, this would be a very, very different blog. It would be a blog filled with worry, hand-wringing, and all sorts of dark thoughts. To some extent, it's taken the passage of time for me to get to this better place, but along the way I happened upon some things that helped:

• I talked about my worries and my grief. With friends, with other parents of kids with special needs, with people in support groups, with a therapist. Now we have blogs, but there's nothing like having a real conversation to get the trauma out.

*only I don't talk much on my worries and my grief. I usually answer properly to people's questions and it heals me a lot by sharing the information. I read a lot too.

• I found ways to savor Max. I've written before about how my fears for Max's future would sometimes overshadow the fact that I had a really cute, delicious baby. So I got into taking photos of him. Lots of photos. I'd order prints and meticulously put them in photo albums. I made photo murals and hung them around the house. I'd order photo calendars of Max for Dave and family. I had a photo gallery of Max in my office. The photos brought in the joy of having a child, the joy that can get so easily squashed by all the medical drama.

• I'd make myself remember that as sorry as I felt for Max, he wasn't feeling sorry for himself. He was perfectly content. He didn't know that he was having trouble picking up the toy car because his hands were tight from the cerebral palsy; he just knew to keep trying.

• I'd think about how much worse things could have been. This was a total shift in perspective, because for the longest time all I could think was, Why did this happen to us? Why am I the only one out of everyone we know to have a child who suffered such a catastrophe at birth? But when I'd consider far more awful things that could have happened, I'd suddenly feel a lot better about the present.

• I put together the best team of experts I could find. I researched doctors and talked my way into appointments, shamelessly throwing myself at the mercy of secretaries. I made sure Max had experienced Early Intervention therapists. If someone wasn't working out, I'd go to bat to find a replacement. I fought the insurance company to pay for more therapies. And we tried alternate stuff, too, like craniosacral therapy and hyperbaric oxygen treatment. I was determined to give Max every possible chance at succeeding in life. Taking action was helpful for me, too; I felt like I had some control over a situation that seemed wildly, and scarily, uncontrollable.

I didn't beat myself up. Between all the therapeutic exercises experts gave us, I could have spent 24/7 working with Max. I did my best, and I refused to feel guilty about not being able to do every single thing. Putting all that pressure on myself would have only made me more stressed, and that wouldn't have done Max any good.

• I forced myself to quit paying attention to major milestones. No more looking at the developmental books, no more updates from BabyCenter. I was only torturing myself by comparing what Max should have been doing with the reality of his delays.

*I stopped comparing her with her colleagues too. Another special kid can do this and that.. bla bla bla.. yadda yadda... yes, shoo shoo STRESS! I won't let the emotion controls me either.

I learned to celebrate small, everyday achievements.

I also learned to hunt down the happiness. If I was bummed out, I'd get in touch with one of Max's therapists and talk about the good things he'd been doing. That always gave me a lift. A little wine never hurt, either.

I finally got to acceptance. It came excruciatingly slowly because it kept head-butting with hope—my hope that Max would completely prove the doctors in the NICU wrong. As time went on, and it was clear Max had challenges, I readjusted my hopes. I was no longer looking for the miracle; I just really and truly hoped that Max would keep on improving. And he has. As our saint of a neurologist has always said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing."

And so, that's pretty much how I have gotten to this place. If you regularly read this blog, you know I still have the sad moments. I cry on occasion, including when I write posts like this that take me back to the early years. I still have a streak of denial; I have Photoshopped the drool out of photos. I have freakouts about Max's future. But I have come a long way, both in years and in my mind. I've learned. I've adapted. I've adjusted. I no longer see myself as a person who had a really horrible thing happen to her; I no longer see Max as a poor, unfortunate child.

I am a mom of a very wonderful kid who has some challenges, a kid whose smile heals me every single day.

If you have any words of advice to add, or you have a question you'd like to ask, please do.

And this is what happened when I didn't beat myself up; when I refused to feel guilty about not being able to do every single thing:

She could hold her feeding bottle properly. Sometimes with both hands, without a pillow support.

Dan banyak lagi perkembangan memberangsangkan. Salah satu yang paling saya gemari akibat sering dibuli oleh ibunya ini ~ bila digeletek dia akan ketawa dan dia pandai memberikan tindak balas terhadap apa yang akan saya lakukan padanya. Jika dia tak suka tangan diletak pada pipinya, misalnya, dengan pantas dia akan menarik tangan tersebut menjauhi pipi. Dan sejak pandai pegang barang ni pantas saja barang tersebut dibawa ke mulut, terutamanya kain. Dan pandai pula menggigit tanda geram yang amat sangat.

Pernah suatu ketika kami ke Kuantan. Akibat terlalu letih dalam perjalanan, tiba malam sesat pula, dia menjerit sekuat hati tanda protes. Diberikan pacifier (kini telah berhenti akibat rosak sebab digigit dengan sepenuh perasaan. Pacifier pun koyak!), dicampaknya jauh-jauh. Di pekan Kuantan, sesak pula. Agaknya orang di kenderaan sebelah pun boleh dengar dia menjerit kegeraman. Namun bila sampai di resort, bila diletakkan di atas lantai terus boleh tersenyum. Ha... itulah ubatnya...

And finally, thanks Ellen for a great post that lifted up my spirit!


working mom... said...

aku mmg tabik spring ngan hang la sue....insyallah, Allah swt akan membalas jasa2 seorg ibu spt kamu nnt...all the best for you and your little ms safiyyah yg mmg hebat iteww!...:)

suealeen said...

working mom...:
Aku ni simple je orangnya. Aku rasa sesiapa pun di tempat aku pasti akan lakukan perkara serupa. Redah apa yang ada di depan mata. Cuma yang beza mungkin level penerimaan kot.

Aku kuat sebab anak aku terlebih dulu menunjukkan kekuatannya, alhamdulillah.

Emmy said...

yeeiii...suka la sue, blog i'm following her blog too...best2...

hmm...btw, mgu ni rasanya macam asik membaca post macam post sue ni...from other blogs i'm sebab kita baru habis raya and baru balik dari berjumpa ramai orang ke ek?

suealeen said...

Tak jugak.. Link ni dah 2 kali naik kat FB. Letak status achievement Syafiah semalam. Then ada komen, komen yang memberi semangat la. So teringat balik entry Ellen ni. It just worth sharing...

ashra said...

wahhh..syafiah gigit pacifier sampai koyak ye..hehe.comel je die.nanti gigit pipi umi lak ek.hehe


suealeen said...

Takleh gigit pipi umi dia ni. Tak best. Dia suka gigit benda keras. :P


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