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

When Providence is Insufficient

It was one of my hardest struggle to face. When I decided to leave self-providence behind for God’s providence about 6 years ago, financial insufficiency has been an uphill journey complete with challenges of the elements. Flipping from being self sufficient financially to being totally dependent on God has been quite a crazy move. Looking back I am so convicted that it was grace that brought me through it.

When I move into my new lifestyle I did not know it would be that difficult as things has always been relatively easy for me. I sailed through university smoothly, got a job less than a month after graduation, moved to a high paying job in less than 2 years and I excelled in everything I put my heart into. Then the calling to leave familiarity behind to an adventure of mission came. It was LOVE that got me to give my yes to this beautiful journey and it was also LOVE that has allowed the purification that came with it.

Being a capable person, it was not easy to be dependent. The concept of being dependent entirely was foreign to me. So the hard lesson began. Over the years, things has not gone the way I wanted it to be financially. I could not raise enough funds for my living expenses let alone raising enough to pay off my mortgages (properties that I bought not knowing God will call me out of my “normal” life). My family ended up helping me out for the debts that I started to accumulate. But there was only so much they could help me by.

It was really conflicting as to why there were deep peace in my radical response to God and at the same time, providence wasn’t sufficient. I was hearing all sort of unpleasant stuffs from my loved ones who was helping me and that led me to judge myself as being irresponsible. I hated being irresponsible as that is just against who I am as a person. Financial scarcity became a giant I have to face through my sincere response to the Lord being in mission.

Those difficulties has thrown me into bouts of doubts about my call. Questions like; “if I have heard and discerned this correctly, why isn’t providence pouring in like a floodgate being opened?”; “maybe I have heard God wrongly”; “maybe this is just me wanting a fantasy of being holy”. All sorts of thoughts which was not entirely wrong but certainly confusing. I pushed through because I knew greater things were yet to come. The grace of God has truly sustained me and I did experience some miracles of finances along my path. There must be good reasons and great treasures awaiting me if God allowed those financial difficulties to be part of my journey. The hours spent in prayer has certainly shaped me in ways I would not have imagined. How my heart was able to truly surrender this giant to the Lord was just simply miraculous.

What struck me today as I look back into my journey of conquering the giant of financial difficulty was the immensity of love I’ve experienced from the people I am indebted to. I would rather be owed than to owe because I believe it is more blessed to give than to receive. However, being on the end that receives mercy, taught me heaps about humility and the way God’s economy works. The people who has bailed me out financially has nothing but pure love for me. I would love to repay them but I guess peace in within my heart can only come when I allowed God to provide in His time. One friend of mine whom I am indebted to assured me that the providence will come when she actually needs the money. Someone being that generous to me showed me a glimpse of the Kingdom of God. I came to acknowledge my own pride and my brokenness that needed great redemption.

As I look into my life today, I can still easily see areas where providence is insufficient. The difference in me today is my response. I am rather at peace to just simply praise God for what is provided and keep praying for open doors. It’s surely not easy when we are not doing that well financially but I am very sure that’s also an opportunity to be creative. It’s a matter of priority and being happy with what we have chosen. For example; choosing to home cook our meals over eating out; choosing quality goods over less durable stuffs so that we don’t have to replace our goods too often (that way we are also reducing the amount of waste on the planet). More importantly; choose to live simply and trust generously.

Dear friends, I pray that you are sustained through times of difficulties. When providence is insufficient, take heart that grace is always overflowing to bring you through it. Greater things are awaiting you at the other end of the trying time. May you be blessed abundantly.

With lots of love,
Irene