Navigating Motherhood through a Chronic Disease

My world was in a daze back in February when I fell flat on my face on the road before being diagnosed with Myasthenia Gravis (MG): an autoimmune disorder that attacks the neuromuscular juncture causing muscle weakness; including voluntary muscles used for breathing. The first thing I was asked from every person I talked to was: “Were you carrying your baby when you fell?”. Thank God I was not carrying my baby. It all started a little less than a month prior to that fateful mid February day, when I noticed difficulty in chewing my food. I thought it was the effect of me feasting away during Chinese New Year.

The symptoms got worse that I started making my food softer and did some research on what could be happening to me. MG came out as the top possibility. Reading more about it made me dread it and kept hoping that it’s not MG. My GP was hoping of the same but somehow my symptoms worsen to the extent that I could not lift myself up from sleeping position, chewing became increasingly difficult that often followed by slurry speech, lifting my arms for short while took a toll on me, smiling was a task and I was constantly exhausted.

Upon arrival at the hospital, the neurologist ordered a brain MRI scan to rule out stroke. MG was given as a preliminary diagnosis that was to be confirmed the following Monday (I went in on a Saturday), when the nerve testing centre is in operation. We decided to go home for the night and planned to be seen as outpatient on Monday. However, I started having difficulty in breathing. It was a scary evening, the what ifs were all over the place.

Sharing with community of friends who prayed for me certainly helped me through that evening. I received the grace to accept the diagnosis and to enter into treatment regime. Upon seeing me as inpatient, my neurologist quickly ordered the necessary tests to be done and had me started on IV immunoglobulin (IVIG) rescue therapy while also start me on my longer term treatment. I was blessed to have tolerated the treatment well. After the first dose of IVIg, I could tie my hair and that felt so good. A Chest CT scan also revealed the existence of a thymoma which means surgery is needed to remove it but that can only be done once I am stable enough.

My biggest worry was my daughter. How am I going to mother? How am I going to provide for her anymore? I enjoyed our breastfeeding journey and does that mean I need to stop altogether? God was so gracious to speak to me at that time by inspiring me to seek breastmilk donation. I am grateful we have a very good network of breastfeeding advocates. Through the group and through friends who helped out, I managed to source out enough donated breastmilk that nourished my baby. Till today she is still enjoying the benefit of human breastmilk thanks to the generous giving of our local Mama Tribe. My own breastmilk supply has suffered a great decline due to the treatment. Even if it is limited, I am still grateful my child still get something from Mama.

We recognized that strength is the major challenge for MG patient, hence we were quick to get practical help. My mother arrived the day I was admitted to the hospital which was such great help for us. She helped me with the baby and daily household stuffs when my symptoms was at the worst. We also arranged for cleaning company to clean the house. My mother’s stay for almost a month helped me to balance a new lifestyle. I was able to get the rest I needed and to get around organizing stuffs that would aid daily living.

At the peak of the treatment to suppress the autoantibodies and to replenish my strength, I was swallowing 20 tablets daily with the help of 5 alarms to remind me of the timing. On top of that, I also started taking specific health supplement tablets to aid with my body function as well as to counter side effects of treatment. The first month since the diagnosis was really blurry. I could only hold enough strength to play with my daughter. I was afraid to carry her in case my strength fail and she slipped off my arms. My emotion was all over the place partly due to the side effects of the medication. Normalcy were hard to imagine.

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Days passed and then months, I started to feel much better. Looking back at the timing, I can testify to the goodness and mercy of God. After my mum left, I got help from my niece and sister for a short while. I’ve also got a friend to help out with cooking on some days. At that point I started to take back the cooking role at home. God in His mercy showed me His unique way of empowering me forward.

Due to the lockdown, we were short of an extra pair of hands after my sister went back to her home and also was locked away from hiring help for cleaning. By that point, my symptoms has started to stabilize to the point that I was confident to carry my baby with the help of a carrier. But I still occasionally feel overwhelmed and limited. So I asked God what was the best view to see my situation? God was quick to answer: “think possible and do what’s possible!”

It was a great place to begin. What’s possible were different on day to day basis. Some days possibility looked like a clean house and warm meals, some days it’s the grace to be grateful that the day went well with little done in the house. There were times possibility meant just being able to pray and connect to my Source through the demands of motherhood. The invitation was to enter to a place of trust and rest; and I happily accepted that invitation.

One of the first breakthrough was me driving alone to pick up my baby’s breastmilk donation. Heaps of preparation ahead of time and I was so pleased that I made it. Driving can be difficult as the bright sun tends to tire me and often resulted in ptosis (droopy eyelid). That fateful morning was bright as and I responded with praise because if God allowed it, then He must be planning to show me His glory.

Thinking possible and doing what’s possible has also helped me to recognized my own preference. I realized piles of chores can overwhelm me, so I start to manage household chores in bite size. Meals became simpler and priority to spend time as a family became our top agenda daily. As my baby grow, her needs also evolve and I am invited to follow her growth with an open mind. The abounding grace I receive through prayer has helped me to have enough time and strength to learn about supporting my child’s development. One of the most fun thing we have decided to apply is Baby Led Weaning method of introducing solids. I had so much fun watching my baby enjoying her food and growing in her fine motor skills. Through all these, the joy of the Lord is my strength!

What brought me through from the peak of my flare up (with the autoantibodies level 200 times above the positive trace) to where I am now; is this scripture;

do not fear, for I am with you,
do not be afraid, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my victorious right hand.

Isaiah 41: 10

A dear friend of mine reminded me to let the One who loves me hold everything up for me. That encouragement has helped me in my process of surrendering and that eventually led me to my rest in trust of the Lord. There’re still heaps to figure out and many are graces that I need. I pray that sharing my story with you will give you a sense of awareness about MG and that you are also encouraged to live in your victory through your circumstances.

With lots of Love,
Irene

Celebration

Celebration is an integral part of life and a lifestyle that I am living by. Whenever we talk about celebration, the first thought a Malaysian would typically have is MAKAN (food). We take our food seriously and to mark any celebration, the food plays a very important role. More important than the food is the reason of the celebration.

We celebrate to mark an important milestone, an important event, successes or progresses we made in life. In my coaching training, my coach taught me to apply celebration as part of the principle of a coaching session. I found it really essential as part of a healthy and connected lifestyle. Last night I was privileged to be reminded of the importance of celebration based on St. Paul’s love poetry (1 Corinthians 13: 4 – 8) and that has left me thinking about my own lifestyle of celebration. Have I been celebrating God’s goodness as He deserves?

When I put celebration in the right perspective, I found that it is way to grow in humility. This is how it made sense to me. Through my countless conversation with people I encountered (or I coached), it is common to hear this from me; “Have you celebrated your progress?” or “How are you going to celebrate this?”. It is also common for me to encounter a startled look, especially if the person has just started to talk to me or just started their journey with me. Those priceless responses were my opportunity to share what I believe celebration is all about.

For some of us, celebration can only happen if a big goal has been achieved and yes that is totally justified and necessary. Here I am talking about celebrating progresses along the way, even the smallest progress. I believe celebration is the fuel that propel us towards our goal. Very often I see people getting discouraged because they did not celebrate their progress. For them some progress is just way too insignificant. Think about this; without those seemingly insignificant progresses, can we actually make it to our goal? It is precisely those small steps that brought us to our goal.

You may wonder now, how can celebration be a way to grow in humility? So, this has been my story. The right perspective of celebration for me lies in the WHO. Who am I actually celebrating? Every progress we made is by God’s grace. From my experience, being able to acknowledge that God is the One who made it possible for me to progress in my journey brought me to a place of celebration. Celebrating the One who made it possible for me. When my focus is celebrating God, I am humbled because the focus of celebration is not me, rather it is Him who made me.

Through my journey of having coaching conversations, I also get these question often; “What do you mean by celebration? How do I do that? Must I eat all the time to celebrate? I encouraged people to celebrate their progresses by doing something they enjoy. For example; if you enjoy reading a book by the beach; then set aside some time to do that as a form of celebration. If you like eating, it would be so easy to celebrate though eating is not the best celebration if you are celebrating your progress in weight loss. If you like watching a movie; that would be a great form of celebration. And if you are a people person like me, celebrating with people who cares would be such an occasion of joy. To mark milestones, I would encourage we do something really significant like skydiving to mark your 30th birthday. Or something crazier like leaving your secular job to serve God full time (ONLY recommended if that is what God wants of you). Hence, it is also important to choose your form of celebration wisely.

I am indeed very blessed to be influenced by people who live a lifestyle of celebration from the beginning of my faith journey. These saints-in-the-making taught me the value of living life to the fullest – a life in humility that always acknowledge God as the provider of everything in my life, including the seemingly insignificant progresses I made in my life.

Dear friends, let us celebrate the goodness of the Lord in our lives. He is our reason of celebration and He is certainly worth celebrating as you are worth celebrating. I pray that celebration becomes the fuel for your progress in life and know that your being are worth celebrating.

With lots of love,

Irene

 

Place of Honour

Who does not like to take the place of honour? Honestly for me, I like the place of honour. I like to be treated with honour and dignity; which in all its essence is a normal human desire. Interestingly this word stood out prominently when I reflected on the passage for the gospel of Luke on humility and hospitality (Luke 14: 7 – 14)

In the Kingdom of God, the place of honour may not look like the place of honour we see here on earth. To be at the place of honour in the Kingdom of God would probably mean being like the saints. They were people who lived ordinary lives like we do today with the grace of washing the feet of the others, the courage to take up their cross and follow Christ, the endurance to run the race for Christ and the perseverance to always choose to enter through the narrow gate.

I would imagine that the place of honour is quite comfortable and it is a nice place to be. Looking at my own responses in life, I realised I often respond to an invitation with this phrase;

“What an honour!”

And then when I brought those invitations and responses to prayer, often time I felt really humbled by the invitation. Of all people, the person who invites chose to invite me. My response is call of responsibility and I am well aware of it. Through those beautiful encounters, God taught me that the place of honour is the same time a place of humility. I do not merit anything on my own but He chose me, continue to choose me purposefully. What better response than “THANK YOU”? May we be encouraged to be like the saints; choosing to wash the feet of the others, carrying our cross with great hope, running the race for Christ and living life to the fullest in the measure that God has for us. With that, let us be hopeful that we will be granted that place of honour.

With lots of love,

Irene

Following the Star

The Feast of Epiphany celebrated today is the great feast of revelation of the Word became flesh. It is apt to note that the wise men followed the star to reach to where Jesus was. The star caught my attention today as I ponder upon this great feast. The revelation of our Lord Jesus Christ was guided by a star. That brought me back to precious memory some time ago when a trusted friend and brother honoured me. What he mentioned stayed with me and that made me question am I really living that out?

“You are a STAR and you are meant to shine” was the line that stayed with me. If I am star and shining, is my light leading people to Christ? Just as the Star of Bethlehem did to the wise men? The other question that I frequently ask myself is; am I even shining? Sometimes it is hard to see the value of my being through my tainted lens. I wonder if I am living fully as God intended me to be. Being in touch with my humanity – my strength and weakness, my beauty and my not too beautiful side, my joys and my sorrows, my talents and my areas of lack; brought me to a place of humility. This is where I can praise God for making me Irene – the one that does not have it all, the one that is in constant need of her saviour, the one that desires to glorify God through her being. What can I say but thank you.

My recent months journey has taught me a great lesson of total dependance on God. Being a generally hopeful and positive person, it was never exactly easy for me to understand tragedy or failure. I have been quite blessed to not have major failures in my life and I like to see those as opportunity to rise higher instead of looking at it as failure. And through my journey of ups and downs – with downs that made me felt helpless and hopeless; I finally get it. I get how it felt like when there seems to be no hope. I get it now why it was tough for people to get out of the pit once they fall into it. God was training me to be all for all – strong for the strong, weak for the weak, compassion for the grieving and celebrations for the joyful. With my somewhat glorious past, it was never that easy to connect to people who struggle with failures and hopelessness. I am grateful that God has found me worthy of this journey.

Through the rough patch, I also learnt what it meant to give a sacrifice of praise and I know how valuable are those praises and worship. Choosing to smile and to give my best even at times that I do not feel like doing so. I get it now how much Christ love me and how He supply sufficient grace to sustain me. Coming back to my question; am I a shining star? Well, once a wise man told me – when things seems bleak, check the fruit of your being and he quoted Mother Teresa. Mother Teresa been through a period of darkness in her soul but she remained faithful and her ministry flourished. That is the fruit!

It gives me much encouragement that although sometimes I do not feel like I am shining but a star will always remain a star – it shines. And I believe that each one of us is a unique star. We are meant to shine and our ray is the leading light that brings people to Christ. Quoting Mother Teresa again when she was asked if Jesus was like her and her answer was; “No, in fact I want to be like Jesus”. It was her witness that drew people to ask if Jesus was anything like her and the reality was that she aspired to be like Jesus. Who would not be drawn to Jesus by such great witness?

Mother Teresa was simply living out her being as the beloved of Christ and if we allow ourselves to be loved into our being by Christ, we would also be simply living out our intended being. May we all find the courage to allow God to love us more and more and may we allow His love to break our being into His light. And as His light, may our being draw more people to believe in the One who first loved us.

May you have a shining 2017!

With lots of love,

Irene

 

 

The Colours of God’s Dream

“What is your passion?”

That is my favourite question to ask people I meet. More often than not it stirred something deep in the person. And the stirring manifest differently in different people. I am taking great risks when I put that forth and through some pleasant and some unpleasant responses, I learnt to be more discerning when I ask questions.

Our passion is deeply connected to our dreams and desires. I had numerous encounter with good meaning Christian who told me that I should throw away all my desires, dreams and plan. Personally for me, I tend to disagree with this approach. I believe our desires and dreams are God given. However, due to our sinfulness and our wounds in the past, our desires and dreams became tainted. The saving work of Christ has enabled me to acknowledge the tainting of my desires and dreams. And as a response to His mercy, I believe it is only fair that I go on a quest of allowing Christ to purify those desires and dreams.

I have been privileged to be reminded of a buried dream as a result of my fears and insecurities. That God given dream was buried because I allowed the other voice to overwhelm that still small encouraging voice. As I look at the Cross, I realised that I feared the pain of the process towards achieving that dream. The process towards the achievement of the dream is the purification process. More often than not, purification is a painful process.

God’s dream of salvation for mankind is of no difference. That process towards the attainment of mankind’s salvation involved great pain. And it is called the PASSION of Christ. The pain I am fearing is nothing in comparison to Christ’s. In fact, his PASSION has made it possible for me to dream His dreams.

The field of His dreams for me is the Holy Ground He has invited me to step into. Realising it as a Holy Ground, I fell to my knees feeling so unworthy to step into it. I was not even able to take off my sandals to step on His Holy Ground.

That was the moment of grace that Jesus came in His gentleman manner; inviting me to take a sit, asked me for my permission to allow Him to take off my sandals for me so that He can wash my feet. With my feet washed, He asked me to step in. How would you not be touched by that?

I was totally blown away by His mercy! How is it possible that God Himself would give me an invitation as such? What merit have I to be bestowed such an honour?

It was not until I heard a teaching on Isaiah 61 did I understand the logic behind Jesus’ invitation (see ICCRS 2013 Prophecies). My pair of sandals represents my pride and my fears; hence it made all sense that I was unable to take them off myself. Only Jesus can save me from my sin. Without Him, I simply cannot get rid of my pride and fears.

In His mercy, God has invited me to this journey of intimacy that has given me the grace to accept His love. I used to be that confident girl who thought that she was able to conquer the world. And mind me, my confidence is amazing gift. However, God desires more for me. He wants me to be fully dependent and to recognise who He is in His dreams for me. He wants me to possess His confidence.

If you have in any way felt unworthy to step into His Holy Ground, praise God! Recognising my poverty before God has been really painful and at the same time very freeing. Embracing the fact that I do have a need and my Saviour is ever ready to fulfil that need – is simply liberating. It fills me with hope of glory, that I do not have to have it all to move to higher ground.

Dear friends, let us approach the throne of grace with confidence and reignite our God’s dreams once again. If you are ever tempted to bury those dreams, just remember that Jesus is just a call away. As the image above shown, we are indeed the pencils (with different colours) in God’s hand. As Mother Teresa encouraged us; let us allow God to hold this pencil and draw His beautiful picture – His dreams for our lives.

May you be blessed!!!

With lots of love,
Irene

Note: Photo Credit – Stefan Hensel (Title: The Colour Spectrum)

The Road Less Traveled

Traveling is one of the things that I like a lot. When I was in the corporate setting, I made sure that I make time for holiday every year. One of the most profound journey I made was a six weeks journey to Europe with the main purpose of attending World Youth Day in Madrid, 2011. In preparation to our journey, we spent time researching about the places we wanted to visit. My travel buddies fared so much better when it comes to researching and planning the trip. Somehow, God has given me a lesser portion when it comes to detail orientated stuffs.

Hence, I must say I am truly blessed to be surrounded by people who has eyes for details and that include my travel buddies. Thanks to their meticulous planning, we get to enjoy our trip and build our friendship. Our journey to Europe has widen my perspective about the world significantly and not forgetting the greatest fruit out of that journey was receiving an invitation from God to full time lay mission work. As we traveled, we learnt the reality of being a pilgrim in a foreign place. Pilgrimage is a recurring theme in Christianity and I am slowly learning what it really meant to be on a journey as a pilgrim on earth.

My natural self dislike to linger on things. As much as I love people, I am also a goal driven person. In my natural mode of work, I like to solve things and move on but Jesus has invited me to a road less traveled. A road that requires me to come out of myself; to be more of Christ and less of me. The process has not been really comfortable. In choosing Christ, I  am choosing holiness on a daily basis. Allowing Christ to increase involves forgiving people that I felt does not deserve any forgiveness. The question of forgiveness is something that I believe challenges us as Christian to live a life of witness. That has been the case for me and through my journey in this beautiful yet very rough road, I come to realize my need for God. And the saying; “To err is human and to forgive is divine” rang so true for me.

I simply cannot forgive! Not with my own strength. And in this area I am glad that I can run to the One who is able to enable me. Here I would like share a snippet of the taste of forgiveness. I have experienced the direct effect of communication breakdown that causes me to be very upset with the person involved. I was so upset that I did not know how to handle it. The question of why was the other person so unwilling to just communicate rang out so loudly in my mind. I wonder if it is too much to ask for people to communicate for the sake of the relationship. In my human weakness, I was really helpless. I refused to be the first to reconcile after all, it was the other person who took our relationship for granted by refusing to communicate. But all these thoughts were bringing me nowhere. I was left desolated.

In moment like that I thank God for my Savior, Jesus. Yes, all my arguments were valid to a certain degree and I acknowledged that. However, Jesus asked;

“Why do you see the speck in your neighbour’s eye but do not notice the log in your own eye? – Matthew 7: 3

This question from Jesus challenged me to examine my own fault in the issue. I was being really prideful in believing that I have no wrong in it. The other person may have their burdens that have prevented them to communicate with me. Or I may have been too scary to be approached. The scriptures humbled me to acknowledge that I had been hard on the person as well; greeting everyone else with a great smile but not so with the person. I was acting out of my wound and that wound can only be healed by Christ. Thanks be to God for the Sacrament of Reconciliation where I can confess my poverty and to receive the graces I need to be reconciled to God first and then to my neighbour.

I was enabled by Christ to first forgive with my heart the person who trespass against me (that includes forgiving myself for my wrongdoing) and I pray for the grace to be reconciled in my strained relationship. As I look into the journey of forgiveness, it is indeed a narrow path (Matthew 7: 13 -14). I believe it rang true for most of us. Forgiving the other is not something we can naturally do; it takes supernatural strength to be able to do so. To finally come to a place of rest in God that I can cooperate with grace brought me so much of freedom.

What I shared was just a tiny event of forgiveness but some of us were face with devastating events where we are called to forgive the trespasser(s). If God is inviting you to forgive, know that I am praying for you and please take this journey of forgiveness in love. Know that you are infinitely lovable, precious, honoured and called to live a life to the fullest.

May you be blessed!

With lots of love,

Irene

 

 

Paid in Full

I love shopping and I love to joke whenever we gather in a small group by introducing myself in this manner; “Hi, my name is Irene and I am a shopaholic.” People used to crack up with that but for me that has been a redeemed part of my life. When I was earning a lucrative income, shopping was my regular hobby and a lot of us (myself included) call that retail therapy.

There seems to be a sense of satisfaction when the things we desired becomes official ours once we paid it in full. I used to crave for that feeling and that was the reason I had a house full load of stuffs to give away when I decided to leave my comfort to be where I am now. During the initial part of my missionary journey, giving up impulsive shopping was one of the hardest thing. Thanks to my conscience that kept reminding me that I am now fully dependent on divine providence, hence it is only right to be responsible with the money that I have.

The journey of being fully aware that all I am and have is a direct result of divine providence has been one that I would term as organic growth. It was not the easiest thing considering the high I always felt when I own something I paid in full. Looking back at my journey of financial accountability, I am really grateful at how far I have come. I know very well that I am far from being meticulously careful with the money entrusted to me but I am happy to say that I have grown to be very free with money.

If you seen me with my cardboard testimony, you would have seen my dark history being; “MONEY: MY SECURITY” and my conversion side being “GOD: MY PROVIDER”. That pretty much sums up the highlight of my School of Mission. I have been through real breaking of pride and roller coaster of doubts that finally brought me to an experience of tangible providence from God. Through this journey of building my trust (which is happening at an organic growth rate – if you are or ever been in sales, you will get what I mean), I learnt what it really meant when God said He paid for my life in full.

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I am purchased with a price and paid in full, that price cost my Saviour His life. As I slowly surrender my life to His Lordship and allow Him access to my soul, I start to comprehend the amazing gift of salvation that I have received. Jesus owns me when He paid for me in full amount. I can imagine His excitement when the transaction happened – the very moment I call Him my Lord and my God. He must be so excited to show me His plan for my life as I would be so excited to wear a new dress I bought. I want people to see me in my new dress and celebrate with me. I would imagine Jesus also wanted the whole world to know that I am paid in full, I belong to Him and that He just wanted the world world to celebrate with Him.

Looking on the hindsight, I recognised my brokenness in my pursuit of the feeling of owning. There were tonnes of insecurity in that attitude of mine. The constant need to possess indicated my possessiveness and my control-freak-ness. I am really grateful for the circumstances where God broke me down just to build me up again. In my season of breaking, it was really uncomfortable. I came face to face with my poverty. The situation where I have absolutely nothing and no one to hold on to but God alone. The journey from slavery to being in control of my life to freedom in trusting the plan of God has been one exciting journey.

In this particular area that I have allowed Jesus to be Lord, I experienced the liberation that I would not want to trade for anything else. It is so beautiful to realize that this is possible simple because God first choose as me He said in the scripture;

“You did not choose me but I chose you. And I appointed you to go and bear fruit, fruit that will last, so that the Father will give you whatever you ask him in my name.” – John 15: 16

It is so assuring to know that God is the Initiator. In everything, we can be sure to give Him all the credit and glory. But we can only glorify Him when we respond to Him. He invites and initiates; after which is our turn to respond.

What would I choose in times of God’s invitation? Am I generous in my response?

Oftentimes for me, I found myself struggling to respond generously as the element of fear is always present. Through those times of responding to God, I learnt that courage is not the absent of fear. Fear can either be a catalyst or a crippler. Only the perfect love of Christ can cast out fear (1 John 4: 18). That can only be attained by grace and that grace has enabled me to respond positively to Jesus; which eventually opened His floodgate of blessings in my life. In other word, my choice to respond to His invitation to follow Him has helped me to lived out my life that has been paid in full by Jesus.

Dear friends, whatever you are going through now calls for a response from you. God has chosen you in a special way and His continous invitation is His initiative to keep saving you. He loves you infinitely and desires nothing short of the best for you. I pray that you are blessed with grace to respond to Him generously.

May you be blessed!!

With lots of love,
Irene