What's it Like to be the Mother of a Chronically Ill Child? (Precious Insights from My Own Mum)

Mothers are Life’s Ultimate Superheroes

There’s no need to state the obvious I suppose, but many mothers are the ultimate superheroes in everyday life. They’re the ones who show up when things get rough, and showing up once is actually the 'easiest' part. This can be especially difficult and true if you are a mother of a sick child.

Unlike movies where superheroes calm calamities in an instant, real life problems require steadfast reappearances. It is to wake up every morning and to show up despite feelings or circumstances. This is tough, and mothers do it without demanding accolades or favours in return.

*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. I am not a doctor, and nothing in this article should be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our Privacy Policy page for more information. Thank you!

Read Related Posts:
• What’s it Like to be the Father of a Child with Chronic Illness? (Precious Insights from My Own Dad!)
• 7 Ways to Be a Better Friend to Someone with a Chronic Illness (and 3 Things You Should Never Do)
• 3 Important Holiday Checklists for Those with Chronic Illness (and Their Supporters)
• We Shouldn’t Expect People to Understand
• Interview on ‘The Uninvisible Pod’: What I’ve Learned From Living with Chronic Illness for 20 Years

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When Your Child has a Chronic Illness or Disability

Being a mother of a sick child will demand a different kind of routine as compared to other healthy kids. Doctor appointments replace football practices or ballet classes; hospital stays become the norm instead of camping trips.

It’s heartbreaking when they cry out and beg you for relief, yet there’s nothing more you can do for them. Frustration fills you as you go to the doctor's for answers, but come home with more questions instead. Such a family dynamic is stressful, yet these mothers never give in or up.

Insights from My Own Mum on What It's Like to be the Mother of a Sick Child

As Mother’s Day is around the corner, I thought that it would be a good idea to interview my own mum. It felt a little strange, as we don’t usually discuss such thoughts on a regular day. Maybe it’s a cultural thing and I’m sorry to go with the stereotype, but we’re Chinese after all 😉

Despite that, I know with certainty that no one else in the world cares about me more than she does. I'm reassured that she has my back no matter what, and that thought is a blessing and comfort in itself. So here's my beautiful mother for you today. Happy Mothers’ Day to all the splendid mummies out there!

(All the italic text in brackets during the interview are little interjections from me.)

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A Rare Interview With My Own Mum On What It's Like To Be A Mother Of A Sick Child

What emotions and thoughts went through your mind, on the night you had to send me to the hospital, and the doctor told you that I could have died?

My mind just when blank. Fear and anxiety. Things happened so fast that I couldn’t do anything but to pray and ask God for His mercy and grace. I also called up my prayer partners to pray. I told myself to keep focussing on the positive, that you would pull through.

As I was praying with Shirley (a friend) next to the hospital bed, a picture of the passover story in Exodus played through my mind, where God passed through and struck down the firstborn of every household. But those who marked their doors with the blood of a lamb were spared. I felt assured by God that you would pull though by dawn.

What’s the biggest worry you have for your child?

That she leaves God and gives up her fighting spirit.

What makes you happiest?

To know that your child is coping well, and that she’s able to relate to you about her feelings, conditions and fears.

What breaks your heart?

When my child thinks that I don’t understand or don’t know anything about what she’s going through.

Expectations. Sometimes I can feel the frustration and disappointment in her, when she expects me to know everything about what she’s going through, and expects me to have an answer to her problems. I feel lousy when I’m unable to meet that expectation, and I feel hurt on the inside.

How do you personally cope when your child is suffering or receives a devastating new diagnosis?

I always feel helpless. All I can do is cling onto God and my prayer support network. It’s always reassuring to know that someone in the group is praying for me and family. The Bible says, “When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through fire, you shall not be burned, nor shall the flame scorch you.”

What’s it like to be a mother of a sick child who lives with chronic illnesses? What qualities or characteristics have you had to hone because of this?

I feel sad and deeply hurt to see my child going through suffering, and being unable to help her cope with the pain, nor able to find a solution to her suffering. Sometimes I wish that I can take over her sickness. However, through the years I have learned to be patient, and to endure the hurts that are within me. It cheers me up just to see a smile on her face, and to see that she is well.

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What ‘normal’ activity or thing did you wish your family could do together, if everyone were healthy?

Our family loves to travel. I remember some of the fun times we had in Switzerland and Hong Kong. The joy of going to church together in Hong Kong. It would be nice if we could go back to the good old days. I would love to relive the good old times.

*If* you had the choice to go back in time and choose never to have your child who’s ill, would you do so? Why or why not?

No. Every life is precious in the sight of God. I remember almost losing my eldest daughter while in Malaysia, when I was only a few months pregnant with her. I begged God to protect her, and surrendered her to Him.

Do you blame yourself in any way for your child’s condition?

Sometimes.

What’s your biggest/best piece of advice to other mothers with children who are chronically ill?

• Stay positive for your child.
  
• Be a listener. Sometimes being a silent supporter may ease the tension between a sick child and the caregiver. Whatever you say may hurt.
  
• Just being present.
  
• Prayer.

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What’s the biggest life lesson you’ve learned through all this?

Be thankful and grateful always. Every single day of life is a blessing from God. There are friends who care and are faithfully praying, even though we don’t speak much.

What sort of support did you wish you had more of in regards to being a caregiver to your child?

Emotional support.

What sort of activities do you do to replenish your own supply of energy and to restore emotional wellbeing?

Playing the ukulele, meeting up with friends, spending time alone away from home, and doing some charity work. Praying and reading the Bible does help me emotionally.

What’s your happiest memory of you and your family?

The good times we had in Hong Kong while living there – the fun of playing with simple carton boxes, doing puzzles, the togetherness as a family, the prayer time, the weekly outings. During those days there wasn’t such a thing as mobile phones. There was more family time and verbal communication.

What did you wish your child could do?

Don’t suffer alone. Communicate more even though I may not be able to provide any answers.

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In Conclusion to What It's Like to be a Mother of a Sick Child

The answers and insights that my mother provided in this interview were quite different from those of my dad's. Her responses were more emotional, and emphasised more on communication, even if she may not understand entirely how I feel, or the pain I may be experiencing.

One thing that was similar to my dad's responses was our family's love for travel, and the good times we had growing up together in Hong Kong. Those childhood memories of my family are dear to me, too. Not only was I free from chronic illness, but had many wonderful opportunities to explore the world around me. This has influenced the way I think and live my life to a large degree - even the way I cope with chronic illness life.

If you are a parent of a child with chronic illness - I would especially like to hear from you in the comments below, or even interview you should you be up for that 🙂 Remember that you are not alone, and we are all in this thing called 'life' together.

Read Related Posts:
• What's it Like to be a Caregiver for a Chronically Ill Loved One (The Challenges & Rewards)
• How to Set Healthy Boundaries in Your Relationships with Chronic Illness
• February 2018: Adapting to the Ebb and Flow of Chronic Pain and Depression
• A Perfect Capture of Life with Chronic Illness
• December 2017: Recovering from a Cold & Reminiscing My Childhood in Hong Kong

For More Insight:
• How My Mother Kept Me Alive (shadowsedge.com)
• So, What Do My Parents Really Think About MS? (trippingonair.com)

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