Tag Archives: hope

The Continuation of the Saga

Posted on by

This is the Part 2 of my blog post The Saga Continues. 

A few days after the test was done to me, I received an appointment letter for me to see the neurologist who mainly looked after me. I, together with my husband and sons, went to the Neurology Day Stay Clinic at Auckland City Hospital last Monday.

There was also a Neurology student inside the clinic where Dr. R discussed about their findings on me. After he asked me how I’ve been, he asked the student: “What condition will you consider if the symptoms are muscular weakness and difficulty in swallowing, particularly after some activities and towards the end of the day, and her eyelids are slightly droopy and she’s having double vision every now and then? The acetylcholine antibody in her blood has been tested thrice and they’re all above the normal level.” The student gave some answers. She didn’t nail it!

Dr. R said, “It’s Myasthenia Gravis!”

What is Myasthenia Gravis?

At that very moment, I felt like everything in this world suddenly stopped. Even my breathing stopped…no, I just held my breath! My heart was beating fast and I looked at my two sons. I didn’t know what to think and feel.

Then Dr. R looked at me and started to discuss what he and Dr. C thought about my case.

The good news was the overall result of the test that was done to me was within normal.

The bad news was they still could not confirm that I really don’t have Myasthenia Gravis. He said that Dr. C explained to him that he’s had some patients who had normal results as well but after months or even years of investigating their conditions, it turned out that when the tests came back normal, they were only at the stage when Myasthenia Gravis was still developing until the symptoms got really worse.

So now what?

He told me that they won’t do anything at the moment. No treatment, no therapies, nothing… unless the symptoms start to get worse. They will see me again after 10 months. Yes, 10 months. He asked me to have another set of blood tests to see if any other autoimmune disorder is possible — meaning: if my immune system is also attacking my other organs such as thyroid, liver and kidneys.

My husband asked him if we can do anything (i.e. diet or lifestyle change or vitamins) to prevent the Myasthenia Gravis from developing in case it really does. Doctor said that there’s nothing we can do. Yes, NOTHING!!!

To be honest, that was very, very frustrating. We had waited for almost half a year to find out the cause of that horrible experience that not only me but our whole family had. And yet, the answer was still not final. I had been praying that I’d hear the doctor say, “it was indeed Guillain-Barré Syndrome and you have nothing to worry about now…” or at the very least (not that I want it), “you have this or that illness/disorder and we’ll start with the treatment and you will be cured.”

But then, I have nothing against my doctors. I know that they’ve done everything that they could. They have considered everything that they know (or learnt) and did all the possible tests. And I totally appreciate how they have handled my case. Moreover, I’m really thankful that they have never put me under any trial-and-error medications.

For now, I’ll wait until they call me again for my next appointment and simply pray that I’ll get better and better… and, of course, to continue living my life. After all, I’ve got two wonderful boys to look after and my husband and I have got beautiful plans for our family to look forward to.

A Great Village To Raise Children

Posted on by

It was 2nd of February in 2015 when we came to Hillsborough Playcentre for our first visit. That was my 33rd birthday. My firstborn was about to turn 8 months old then.

Photos during our first visit at Hillsborough Playcentre

Coming from a country where most children grow up attached not only to our parents and siblings but also to our grandparents, uncles, aunts and cousins (as a matter of fact, to our neighbours as well), we felt like our child was missing something in his life. Although I knew that my son will eventually go to school where he’ll meet new people, I have believed that he would also need to be around other people during his preschool years. But then, being migrants here, it was just me and my son in the house during weekdays and it’s usually just me, my husband and our son during weekends. Physically, we have neighbours but, to be honest, we haven’t met our neighbours until now. And although I knew he needed to be around other people apart from me, I never wanted to put him in a childcare centre and he’s too young for kindy. I tried to join in playgroups but I wasn’t lucky to find a group that I could be comfortable with because the first groups that I encountered were with moms who would put their children down with toys and other babies then would just start to chat about the challenges in motherhood. In my mind, I was screaming, “I already know it’s hard to be a mom and I came here so that my child and I could have people to interact and play with. I brought my child here not to be talked about!”

So my husband and I had a hard time figuring out what to do. Personally, I wanted to go to a place where I wouldn’t have to leave my child behind, a place where he would not have to come and stay for long hours, a place where he can discover and develop himself — his own interests, his own skills. I wanted to take him to a place where he wouldn’t be directed what to do, a place where he can choose what, when, where, with whom and how to play. I wanted to take him to a place where I could be a part of making decisions on how to help my child learn and thrive. I wanted to go to a place with my child where we could have fun together.

For several months as we would drive on the road where our house is, I could always see the “Playcentre” signage. When I was already desperate to find an option for my son, that signage came to my mind so I researched about it and here’s what it says on their website:

If at this point, you want to know more about Hillsborough Playcentre, here are their website and Facebook page.

Everything that I had read about them appealed to me. It felt like that was exactly what I wanted. So I made an enquiry and I was invited for a visit.

Then came our first visit. Right then and there, I already wanted to join. The place was totally awesome — an indoor space where children could freely choose the toys, puzzles, costumes and books, a huge outdoor area where children could freely move around and explore. I saw children in costumes — princesses, animals, superheroes. I heard children laughing, talking to each other and even planning about their play dates. The moms whom I spoke with were all praises for the centre. They all sounded happy — both adults and children. They allowed me and my son to simply experience how it is to be at Playcentre. And yes, we joined in.

I believe joining Hillsborough Playcentre is one of the best decisions that my husband and I have made. I have seen how our son has learnt and developed over the past two and a half years that we’re at Playcentre. He’s got people whom he calls his friends and those whom he calls friends are not only children but also the children’s moms (and a few dads).

Moreover, my husband and I have found our own friends from Playcentre — well, not only friends… we have found a family… a great village where we would love to raise our children.

In the past two and a half years, we got to have fun with them not only in the centre but also in the parks, ferry rides, parties, etc.. Our firstborn celebrated all his first three birthdays with them. Then I got pregnant and gave birth to our 2nd son. Each day for two weeks, each member family took turns in bringing a home-cooked meal for us. When I had to rush my firstborn to the hospital, a Playcentre friend rushed to our house to look after our baby. When I got sick earlier this year, our Playcentre friends helped us in looking after our children. Yes, our Hillsborough Playcentre family has been one of our main support groups during those challenging times.

But due to the illness that badly hit me this year, I had to make a very sad decision. We’ve got to stop from coming to “our village” at the moment but with the hope of being able to come back perhaps after two or three terms. Although they have wanted us to stay and have offered us several different options and great support, I still decided to leave because I can feel that I won’t be able to give the same commitment that I would always love to give and I don’t want to be unfair to the community who has been giving their best for us.

Moreso, I know in my heart that, more than anything else, my children need a strong and healthy mother. Our own family needs me to be the strongest and healthiest that I can be. And I know that once I get back to my healthiest state, we are going to come back to the village that we have loved so dearly.

A farewell card is the last thing I want to receive from Hillsborough Playcentre.

For now, it’s au revoir… til we meet again, our beloved Hillsborough Playcentre! ❤️❤️❤️

My Faith and God’s Faithfulness

Posted on by

When I think about God, I see myself as if I am forever a child.

I have been asked several times already how I have been able to still smile and to stay happy after everything that has happened in my life. I have been praised many times for being a brave and strong person, for being a woman of God and for having a strong faith in God.

The truth is that I am not always brave and strong. I get scared and anxious many times. I may be smiling but I am not always happy when I smile. I also feel sad and I also get depressed.

The truth is that I also lose my faith in God from time to time. I question Him. I complain to Him. I argue with Him. Sometimes, I just want to give up and that if I can stop myself from breathing, I would.

But then, I always feel that God have never given up nor will he ever give up on me. I feel like He has always remained and will always stay faithful to me.

If anyone will ask me how I can say or prove that God is faithful to me, I don’t know but I strongly feel it deep inside.

What has happened to me these past few months was not the only time when I felt like life and the world have been conspiring to force me to simply give up. I have been through family crises, death of a loved one, dangers, failures, heartbreaks, illnesses and people’s harsh judgments — you know, those moments in life when I could just let my spirit be crushed into billions of bits and pieces.

Yes, there were thousands of times when I was already on the edge and I was too certain and prepared to jump off the cliff.

And then, instead of falling, it felt like I would just be floating until my feet would land on a better ground. It would always feel like I am being saved. Or better yet, I am presented with a great amount of hope… as if I am being told that there are still more beautiful days and years ahead of me.

So what has happened to me these past few months has just been another chapter in my life where God has shown me his love and faithfulness.

After all these months when I was losing hope and I was scared of not being able to look after my sons again, I am back to being the mom that I planned to be although my younger boy has still been spending days in the childcare centre.

Today, I have been discharged from physiotherapy. Next week might mark my final occupational therapy session. Although there are still tests to be done and even if I would still need to be seen by a dietitian and the neurologists, I feel really glad now that I can do almost everything that I used to do.

Indeed, God has always been faithful to me.

In my moments of fear
Through every pain Every tear
There’s a God who’s been faithful to me
When my strength was all gone
When my heart had no song
Still in love, He’s proved faithful to me.
Every word He’s promised is true
What I thought was impossible I see my God do

He’s been faithful, Faithful to me
Looking back, His love and mercy I see.
Though in my heart I have questioned, even failed to believe He’s been faithful, faithful to me.

(He’s Been Faithful by Brooklyn Tabernacle Choir)

Let Them Be

Posted on by

“I am SUPERMAN!!!”

“For to be free is not merely to cast off one’s chains, but to live in a way that respects and enhances the freedom of others.” -Nelson Mandela

“Nooooo!!!No suot (wear) that! Not that shirt! Not that pants!” screamed Mr. Two. “I want Superman lang (only),” he DECLARED.

There are mornings like this. Sometimes, it happens during mornings when everybody’s in a hurry. Yes, the struggle is real! (I ALSO WANT TO SCREAM “NOOOOO!!!”)

But then, what’s really wrong about a two-year-old wearing his Superman costume when he will just go to play in the childcare centre or at Playcentre? Nothing! Yes, nothing, right?! So why struggle?

“I am MAUI now!”
(Because he got “tattooed”…with stickers!)

Recently, he has become so OBSESSED with Moana. When he’s allowed to watch TV, he wants to watch Moana only. When we listen to music, it has to be the Moana soundtrack. And we have to listen to Moana soundtrack every single minute … every single day… and he dances his heart out every single time that he hears the songs. (Dancing is the cute part but listening to the same music over and over again? It makes me… “What can I say except you’re welcome? You’re welcome!” Arghhhhh…) Oh, one afternoon, he didn’t want to wear anything except his underpants because Maui is topless and then yesterday, he’s got himself “tattooed” (with stickers) because Maui has tattoos and HE IS MAUI, according to him!

So anything wrong with that? NOTHING!!! Because there is nothing wrong in letting the child believe that he can be whoever he wants to be.

Now I may be questioned: “So what if he gets so frustrated when he’d finally realise that he is neither Superman nor Maui?”

First, I am sure that he knows that he is neither Superman nor Maui because we call him by his real name and he responds to us.

Second, it is very, very natural for children and even for adults to get frustrated. Therefore, it is actually good for him to get frustrated when reality hits him. It becomes an opportunity for us to help him learn how to accept the fact, let go and move forward while he is still very young. Then while he realises that it is not all the time that he can be whoever he wants to be, he will still believe in himself.

Because he can try to become the person he wants to be. Because we believe that he can. Because we let him be!

He can be a mechanic!

He can be a firefighter! (He’s just having a break in the fire station. Look, he’s still wearing his fireman boots!)

He can mow the lawn!

He can be a photographer!

He can be a musician!

He can be an engineer or even a plumber!

He can be a chef!

I am a strong advocate of free play. They can get messy. They can get wet. They can explore. They can run around until they get tired. They can play with dolls as long as they are being good fathers or big brothers to the doll. They can play cooking.

Basically, I let my children do everything. I let them be.

Now don’t get me wrong. Yes, I give them freedom to do whatever they want to. However, I also have rules that they must strictly follow.

  • When it is eating time, it is eating time. They have to sit with us at the dining table. (This can be bent sometimes but should be followed most of the time.)
  • Eat what’s served on the table. Be thankful for the food whatever it is. They can decide on how much to eat though (only them can feel whether they’re hungry or full).
  • Bedtime starts between 7:30pm and 8pm. I can’t control how soon they fall asleep but they must stay on the bed…no standing up, no sitting, no jumping…nothing else but lie down!
  • Never hurt nor harm anyone.

I let them be because I want them to know that I trust them. I let them be but I let them face the consequences of their choices. I let them be and I celebrate with them when they achieve something from being who they have decided to be. I let them be because I know that it will help them develop a good amount of self-control and a good sense of full responsibility over their lives.

I love, trust and respect  them that’s why I let them be.

The Labyrinth in My Mind

Posted on by

I’ve been wanting to write since after my appointment with my doctors earlier today. There’s so much that I would like to write. But I don’t know how to start. I don’t know exactly what to write about.

 

Should I write about exactly what the doctors discussed with me? Should I write about the special blood test result that they already received from UK and Australia?

 

Should I write about my single-fibre EMG and Nerve Conduction tests that were done earlier? About how it felt to have a needle inserted into my muscles and being moved around my muscles with those tingling electric shocks?

 

Should I write about acetylcholine? And what should I write about acetylcholine? Its formula or IUPAC name or molar mass or its chemical structure that I learnt from Organic Chemistry and Biochemistry classes back in Uni? Or should I write about how it was discussed by my doctors today?

 

Should I write about Myasthenia Gravis? What about that? About how it can present itself as Guillain-Barré Syndrome? About the medicines that I might need to take, which I hope I wouldn’t have to because once I take such then there’s another medicine to take to prevent the side effects of the main medicine?

 

Should I write about me having to wait for another set of days until the other special blood test results arrive from UK? Or about the scan that should be done on my thymus gland and why it should be done?

 

If someone dares to get into and to explore inside my mind now, he or she might feel how it is to be in a labyrinth.

 

Just when I thought that I have been recovering big time from Guillain-Barré Syndrome, the doctors discussed with me what my condition has been most likely instead of GBS.  And as if GBS was neither rare nor complex enough, the doctors consider that my condition is the rarer and more complex one. The truth is that even if I’ve never wanted to have GBS, I’d rather have it than MG.

 

Looking at the bright side, at least my doctors don’t simply make me take any medications unless all symptoms and test results perfectly match one another. And this whole thing has made me witness the real life “Grey’s Anatomy” (Neurology edition).

 

I’m still hoping and praying for the best.