A trail of illnesses and broken pathways…..

We went on holiday to Tioman Island recently. It is a beautiful island off the coast of Peninsula Malaysia, where the movie South Pacific was filmed at in 1958. It was our first holiday in a long time. The girls made friends with another girl there, they swam in the ocean, built sandcastles, fed the fishes and ran free all day. More importantly, it was our first holiday without the nanny. Ever since Maya was born, we have always travelled with the nanny because Maya was so difficult and fussy. We needed 3 pairs of hands. At times, my parents were kind enough to accompany us on some of our trips. Even then, 5 pairs of hands weren’t enough at times.

When Min was born, then when May regressed and eventually Min too regressed, we needed all the help we could get. We were always a little bit envious of parents who didn’t need a maid, we couldn’t cope without one. Well, we could. But we’d be exhausted, the house would be in shambles, the girls would be neglected and we wouldn’t have the energy to nurture our marital relationship. Mums who do it all leaves me feeling just a little bit ineffectual, though I know that it’s because their children are easier. As a friend said, my 2 girls were the equivalent of 4 boys. 4 boisterous, hyper, angry boys. That was one of the sweetest things anyone has ever said to me, because it validated what I felt at times. When it got too overwhelming and the feeling of despair because I couldn’t manage just one small child.

Sitting on the pier

So for us to go on the family holiday together, without a maid and actually enjoying ourselves was an entirely novel experience. There was no stress, no anxiety and no dramas. We coped very well, we didn’t miss the extra pair of hands and no one cried. We followed the natural rhythm of island life and chilled out. Just like what a vacation should be like. One day, after a rainy afternoon, the hugest and most glorious rainbow came out, rising out of the ocean. It brought to mind the first rainbow Maya ever saw in Singapore. That fateful day when May said “Look Mummy, there’s a rainbow in the sky!”. We sat at the pier and watched the rainbow for the longest time.

3 island beauties

I am eternally grateful for where my girls are right now, their future is brighter than anyone ever thought possible. But it tears me up that they are so sick so often. They never seem to get a break healthwise. Many are under the mistaken belief that everything is rosy perfect in our home now, because the girls no longer have autism. Yet I still feel like I’m fighting a dirty long drawn-out war even though both parties have called truce. The clean up job is taking longer than the actual war.

I’m mindful of friends with young babies, most of the time I have to cancel a playdate because one of my girls are always either just about to fall sick, are in the middle of an illness or just recovering from one. I wouldn’t want to pass on the virus to another child, I feel a strong social responsibility. I absolutely hate it when people come to my home or a social gathering and don’t have the decency to mention that their child is having a high fever or the flu. Though dragging a young child around town when he is sick boggles my mind. Or worse, when they themselves are sick and they try to kiss and hug my girls! A little bit of common sense goes a long way ya know?

Feeding the fishes

Anyway, with the girls’ impaired immune system, every little infection turns into a long drawn out period of illness, more often than not turning into more severe infections. If we’d exercise a bit more hygiene practice, perhaps we will need less vaccinations. After all, most of these infections occur through contact or airborne transmission. If you or your child are sick, stay home. Please don’t send a snot-bucket, drippy-nosed, hacking up, vomitting, feverish, phlegmy kid to school.

We are now doing classical homeopathy after a brief fling with functional homeopathy and no longer do any diets or biomed supplements. I can’t predict whether it will be 100% successful, just as no one can predict if a particular course of treatment will work for your child. I have a sinking feeling that at some point I may have to crawl back to mainstream allopathic medicine or biomedical sciences. But for now, I have to hang on and stand true.

Min has been battling a cough for the past 2 months. Allopathic medicine gives me the shudders right now, it’s at the point where all we hear are steroids and the dreaded word ‘suppressing’. As if suppressing the immune response is something to be proud of. I feel that I’ve tried everything, though I know I haven’t. Can you just hear the exhaustion in my voice?

Getting a foot massage

As a mum I will continue to seek better health for my children. Yes, they are recovered from Autism the diagnosis. But no, they are still a trainwreck of immune dysfunction, gastrointestinal disorders, respiratory illness and failure to thrive just to mention a few. No more worries about language, social impairment or cognition though- must remind myself to count my blessings every single day. But still a bunch of health issues, which if left unchecked will give rise to bigger and more serious medical illnesses. The healing is taking a long time, it requires more work and cracking my overburdened mind for inspiration and smarter solutions that most times are hard to come by.

I don’t have the luxury of wallowing in denial, in disbelief, in remorse or the myriad of emotions we are flooded with daily. If I could, I would hand over the care of the girls’ health to someone better, smarter, stronger. But I can’t, I’m their mother, it is my sworn duty. I can’t wait until I get a 100% endorsement from whomever, to guarantee me that a particular treatment will work. No one can predict the future. For better or for worse, I keep trying. Even when Autism still kicks us in the ass. I pick myself up and I keep going. For the sake of my children.

I am still fighting for the girls’ better health, constrained by geography, bureaucracy, finances and personal conflict. In spite of all that, I will never shortchange my daughters, they deserve the best. If we can beat the autism diagnosis, we can beat the medical fallout that autism has left us.

As a Warrior Dad friend recently wrote, Autism leaves a trail of ruined memories. Another Warrior Mum said that her husband can’t get in touch with his sadness, for it feels bigger than an ocean. For me, I haven’t had the time or the energy to look back at the collapsed hopes and dreams that I had for my girls. What I see is a trail of illnesses and broken pathways…..But I force myself to look away from the destruction that Autism has left us. For right now, they are sitting quietly and drawing together. They are happy, contented and wonderful little girls. It’s a beautiful day. Until nighttime, when May’s anxiety and negative thought process comes to the fore (again) and Min’s coughing and congestion is so bad that I fear one night she won’t be able to breathe. And I’m back looking at the trail of illnesses and broken pathways…..

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7 thoughts on “A trail of illnesses and broken pathways…..

  1. I hope one day, I will be able to go on a holiday like that too, with my husband and son. You are an inspiring mother too look up to Marissa.

  2. what a heartfelt blog. They have an amazing mom and they will be forever greatful for all that you do for them.

    Hugs,

    Ana : )

  3. Thanks Marissa for your thoughts. I love the video of them drawing.
    I am reading a book now that might help. Have you read the Body Ecology book? It says the BED can help heal the gut and immune system when nothing else is working. You are welcome to borrow my copy.
    I am praying that Andrew will get to the point where Yasmin and Maya are!

  4. Dear Marissa,

    I hear your exhaustion and I wish I could offer you the inspiration, the hope, the positiveness that you have offered and still offering to all your readers. Please think that one day ( sooner rather than later), you’ll look back on these days with a pat on your back for brining good health to your girls….. Just like what you’ve done with Autism. Give yourself a break, youve done wonders already.

    Take care

  5. Pingback: Goodbye Sore Throat, Hello Handwriting! | Spectrum Mum in Malaysia

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