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

My Postpartum Prayer Life

Chaotic would be my word to describe how my prayer life looks like after the birth of my daughter. There’s hardly any structure and I am missing the consistency I used to enjoy, not to mention it is almost impossible to pray my favourite prayer – the rosary. As I reflect carefully on the word I used to describe my prayer life, other words started to emerge: raw, honest, desperate, HUMAN. Imperfectly human!!!

Although energetic by nature, I still like my life to have some kind of order. My daughter’s arrival brought great joy has also thrown me out of balance. It took me a little more than half a year to find my prayer bearing when I moved back to Malaysia; I really hope it doesn’t take too long this time round. My desire for control is pretty apparent but who doesn’t like having their lives under control?

I am basically pinned to my breastfeeding couch that face the little altar in my house. Great place to pray! I spent most of my day crying out to God for the lack of control in my life. The floor is dirty and I could not clean it; the toilet needs cleaning; the kitchen needs organization; meals needed to be prepared; the laundry needs hanging and folding and the list goes on. My honest helplessness of not knowing what to do and also my occasional meltdown from overwhelming emotions has somewhat become my prayer.

Just recently my husband asked me to pray for his work and I was almost playful when I prayed in tongue. That playfulness reminded me I have a treasure in this gift of tongue. St. Paul’s letter to the Romans (Rom 8: 26-27) kept ringing in my head that the Spirit helps us to pray. The day I spent edifying my soul by praying in tongue was not the easiest day. Baby was extra fussy and extra clingy, not to mention wrists injury felt worst than ever. A stark difference I noticed on that day was my extraordinary calmness. My spirit cried out in sincerity and it helped me through the day. I can only thank God for His grace upon me.

Another treasure that I was reminded of was the examination of conscience. I realized I could do that while feeding my baby especially when woken up in the middle of the night. The examen has helped me to be more aware of God’s presence in my day – more aware of my own frailty especially when frustration gets better of me. This is where the design of God is just simply awesome. One night I was woken up by my baby needing a nappy change and she moved a lot while being changed. My injured wrists were not taking it too well. In my frustration, I told my baby to stop and frowned at her. She in turn gave me the sweetest smile. My heart melt into a smile on my face. That is definitely another occasion of abundant grace of God.

Dear friends, my prayer for you is that you will appreciate the grace of your season. May you always see the beauty of God’s abundance in your life.

With lots of love,
Irene

Believing Without Seeing

One of my biggest conviction after living in a missionary community is nothing great can ever happen without prayer. Intercessory prayer played an important part of our Christian life and that is demonstrated throughout scripture. Having witnessed first hand the importance of intercession, I decided to invite a friend to start interceding for JumpStart, a programme I am passionately running now.

JumpStart has turned my life towards the dreams God has for me and I am delighted to have journeyed with and witnessed lives changed through this workshop. The recent message from our intercessory team suggested a time of faith strengthening – a time where I just need to believe that seeds are being planted even if I am not seeing it. For a person like me who’s very result orientated, not seeing anything happening on the surface is very challenging.

How can I continue to persevere when I don’t see a single sign up? When every odds seems to be against me, how can I see through the eyes of faith? With my own strength, I simply cannot. I am blinded by the adversities, the lack of communication and the biggest one is the lack of response. All these things made me question if I have really given my best? I felt really helpless to not be reaping any fruits and that tempted me to just settle for the easier path.

In the midst of the struggle I felt comforted that the still small voice refused to let me give up. Through my struggle, God continue to teach me and encourage me. I came face to face with my poverty – my inability to listen to God and to trust Him in totality. It’s frustrating when things does not turn out the way I want it to be. When faced with my human-ness, I am at times tempted to run away but I knew that is exactly where God is meeting me. It’s a comforting truth that my soul needs to experience.

Would the end result be of great success? I don’t know for now. What I do know is to continue to be faithful and do all that I can to make JumpStart available to more people. For my part now as I could not see anything in the horizon, the best way forward in believing would be to humbly ask for the grace to trust. This grace will also help me to enter into His rest and I believe that the power of rest opens up the floodgate of trust and love.

Dear friends, in times of doubt I pray that you will be carried through by abundance of grace. May you experience breakthrough and may your heart be filled with praise and worship of our Almighty God.

With lots of love,
Irene

Remaining Hopeful in the Midst of Despair

8 Aug 2019 was one of the darkest day for us here in New Zealand when 94 MPs voted in favour of an extreme abortion bill to be passed. A day of reparation was organized by Family Life International and since I wasn’t physically present, I decided to spend sometime praying for the intention of life. I was overwhelm with a sense of heaviness when praying, knowing well that majority of Parliament was going to vote in favour of the bill being passed. It was then I asked God, how should I pray?

The answer I received in my heart was to remain hopeful, pray for hope in the hearts of the warriors of LIFE and pray for hope to fill the people. That was the moment of breakthrough and I felt the peace to declare that God’s will be done no matter how I dislike the look of it. Despite the trust, I am still extremely saddened that it happened. I could not help but to weep for countless of unborn children and their mothers (and fathers) who would fall victims should the extreme abortion bill be passed. You can read the details of the bill here.

It doesn’t make sense to me especially if we are honest with science. How to even justify when is the limit of “non-humanity” of a baby in the womb? Does changing the term from baby to fetus justify it? Certainly not! It is inherent in each one of us to want to live and each one of us started as a fertilized egg (zygote) that developed into an embryo, then a fetus. It’s interesting to note that fetus translates to little one. How endearing is that!

My pro life stance has always been based on logic and truth that God is the author of life. I am privilege now to have my conviction strengthen even further by the honour of carrying my growing 27 weeks old baby. Her humanity is confirmed from the moment my husband and I found out about her. It was a great day of joy mixed with the worries of all sort. Our lives were changed and enriched, so is our prayer life. We speak life and blessing upon our child and we pray for her protection every single day. We want to give our child the best chance in life.

Our baby’s strong heartbeat was detected at 5 weeks. At 10 weeks, she was moving actively, we can see her spine and it was a delight to see her dance literally through the ultrasound image. I started feeling her physically at 17 weeks. She is responsive to her father’s voice that every time her Papa called on her and placed his ears on my belly, she would give him a good kick. Her awareness of different noises around is really fascinating. One vivid instance was her being shocked by the sound of the vacuum cleaner when I felt a jolt while operating the vacuum cleaner (this was when she was less than 20 weeks old). My personal favourite was how she was leaping in joy whenever I spend time at Eucharistic Adoration. These are tender moments that I never thought I would share so publicly but I guess it is essential to witness to the joy I experienced and hopefully move hearts to be voice of the unborn.

The way the legislation is being drafted literally means my husband and I would have to fight hard for our child’s right to be recognized. We believe our little one has the basic right to life, so is her unborn peers. It is disheartening to know that our law does not provide such protection to the most vulnerable of our society, little ones who could not speak for themselves. These children are potentially my baby’s playmate. They are human being with potential to be great men and women who will leave lasting legacy.

With so much of emotion stirring within, I believe the best way forward is still to remain hopeful and trust that God’s will be done in the best of our interest. The battlefield would need more warriors for life now than ever. Let’s actively and boldly choose life. Let us remember that we are but a link that forms the great fabric of society. When each of us do our part is in speaking a language of life, we would actively participate in life. Raise our children to honour God and to live life to the fullest. Raise communities that would support each other in building the culture of life. Be bold about our faith and live out our faith radiantly. We are all sinners on the journey towards sainthood, so let’s love each other into being and work collectively towards a better world for our children and generations to come.

Dear friends, I pray that my honest sharing would encourage you to be the voice of the unborn and their parents. May we be empowered to do the little we can to support pregnant mothers (and fathers of the unborn). Growing a little human is really a marathon that requires heaps of strength – make it a point to encourage a pregnant woman that she has the capacity and capability to accomplish this great race, cheer her on all the way as her body is doing some miraculous work. I believe women deserve to know that they are able to mother well and be successful at the same time. Our children is often the catalyst for us to want to be better. May we leave a legacy of life for our future generations.

With lots of love,
Irene