What’s it Like to be the Father of a Child with Chronic Illness? (Precious Insights from My Own Dad!)

If there’s one passion that my father passed on to me, it would be travelling. More of the rugged, far out type of places, rather than posh retreats. I will forever be grateful for the wonderful childhood memories he gave to me, as chronic illness dominated my teenage and now adult life.

As you will see in this interview, his best memories are all travel-related as a family. And if you’ve read the interview with my mum for Mother’s Day last month, you can tell that their personalities differ quite a bit as well!

It really is ‘extreme opposites attract’ for them 😉 I decided to re-use the same set of questions for Fathers’ Day, as I was curious as to how different their responses would be. I also thought that it would be interesting to have a parallel comparison of tips and insights from both of my parents.

(*Text in italic within brackets during the interview are interjections from me.)

Read Related Posts:
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A RARE INTERVIEW WITH MY FATHER

• What emotions and thoughts went through your mind, on the night I was admitted to the hospital, and the doctor said that I could have died?

  It was actually morning for me as I was in the U.S., when I received the urgent night call from mum. In between the terse sentences as her phone battery was dying, all I knew was that you were laying at the hospital emergency ward, and may not make it through the night. One thing I remember is: “Come back quickly, as you may not see her alive.”

  My bosses and colleagues prayed for me before I rushed off to madly pack. The company secretary helped to book whatever air ticket was available for me to go home. I boarded the plane within two hours after your mum’s call, which was unbelievable under normal circumstances! The drive to the airport that morning also took half the usual time, which has never happened before, or ever since then.

  The 27 hour return journey went by in a blur; after a plane change at LAX, I was in transit in Tokyo, where they were still using a different cellular system then. I could only wonder and pray as there was no information as to what was happening.

  Upon arriving at Changi airport, my brother-in-law was there to fetch me. He was quiet and didn’t say a word, and I didn’t want to ask if Sheryl was still alive or not. Until I walked into the ward past midnight…

• What’s the biggest worry you have for your child with chronic illness?
  That she finds the journey as being too difficult, and is unable to carry on with the very challenging life she undergoes.
• What do you think is the biggest support a father could give to a child with chronic illness?
  Am still learning and it gets clearer bit by bit. A lot of it comes down to supporting, be it mentally, emotionally, psychologically, financially and most importantly, spiritually.
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• What makes you happiest?
  When she is able to live her days like any other ‘normal’ person. Seeing her travel to places she enjoys, when her body physically allows her to. Also, seeing her working diligently on her blog and making new friends along the way.
• What breaks your heart?
  Watching her endure numerous long days with escalating bouts of unrelenting pain and agony, despite the best that doctors and medical science has to offer.
• How do you personally cope when your child is suffering from chronic illness, or receives a devastating new diagnosis?
  Take in a deep breath and try to grasp the situation, then do whatever I can to help. Pray fervently. Seek help from friends and supportive family members.
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• What’s it like to be a father to a chronically ill child? What qualities or characteristics have you had to hone because of this?
  It makes you feel weak despite your best attempts to bring cheer and help in your limited ways. Seemingly encouraging words or well intended actions can backfire unknowingly.

  I’ve learnt to be more understanding, and to know what to do in the changing environment. Patience and gentleness goes a long way, and is often helpful in calming the situation down.

• What ‘normal’ activity or thing did you wish your family could do together, if everyone were healthy?
  Glad we did a number of memorable things before chronic illness took a hold of her. It would be great to repeat some of the activities below:

  • Weekly bus rides exploring different places of interest in Hong Kong, when we lived there. Short retreats with her siblings to Lantau island, allowing mum to have a different sort of break by herself.

    (Me: Back in those days, Lantau island was a fairly secluded retreat accessible only by ferry, where we spent many a summer at. There was a dog called Bobo at the inn, and I slept with a crumpled photograph of him under my pillow every night until he died.)

  • Long road trips in Malaysia, staying at all kinds of lodgings.

    (Me: I do remember staying at motels that cost $1 a night, which my dad seemed to consider a ‘victorious find’. They were gross 😉 )

  • Attend sports events like football/soccer matches, as Sheryl was a sporty type of person.

    (Me: Thank you daddy, for remembering this part of me that I hold dear.)

  • Regular church activities where Sheryl used to be actively engaged and participated freely.
  • Annual extended family rustic retreats, where the majority of the clan gathered together for a few days. Busy, noisy, boisterous, but all in good fun!

• *If* you had the choice to go back in time and choose never to have your child with chronic illness, would you do so? Why or why not?
  No! The bible teaches us that God knows what is best for us despite our limited and biased human understanding.

  Fanny Crosby, a well regarded Christian hymn writer, composed thousands of hymns which we still sing today despite her being blind from a young age. Reading her testimony including others with debilitating illness brings an assurance to us, that God knows, although we may not ever understand it.

• Do you blame yourself in any way for your child’s chronic illness?
  Definitely not, and why would I?
• What’s your biggest/best piece of advice to other fathers with children who are chronically ill?
  Seek the best for your children and allow them to flourish in their utmost capacity.

  Realising too that children with chronic illness cannot engage or participate in certain activities, and that they need much more rest, care and support.

• What’s the biggest life lesson you’ve learned through all this?
  Life is a myriad of complexities, coupled with intrinsic mysteries which even the best minds cannot fathom. Even then it’s not our goal in life to understand everything, but rather to learn to accept ungrudgingly what is placed before us.
Read Related Posts:
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• Man’s Search for Meaning by Viktor Frankl: 16 Applications in Chronic Illness
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• What I’ve Learned – Living with Chronic Illness for 20 Years (Interview on ‘The Uninvisible Pod’)
• A Page From a Sick Girl’s Diary: Sometimes I Wish I was an Old Person
• What sort of support did you wish you had more of in regards to being a caregiver to your child?
  Perhaps more government support would be helpful, as chronic illness is rather expensive and receives insufficient government assistance.
• What sort of activities do you do to replenish your own supply of energy and to restore emotional wellbeing?
  Short personal retreats, sabbath rest, reading, exercising, church activities, family events, a healthy diet, movies, countryside or beach trips, etc.
Read Related Posts:
• The Extra Costs of Living with a Chronic Illness or Disability (That the News Often Don’t Reflect)
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• What’s your happiest memories of you and your family?
  Family vacations and travelling with her occasionally, just to name a few here:
  • I last accompanied her to Xinjiang and Gansu in China, which was quite memorable (well actually, my mum forced him to tag along, as I was going to go off alone!). It’d be hot and dry in the desert, then it’d snow and we’d shiver the next day. Who would have guessed that it would snow during summer.

  

  • Do you remember the time we stayed at a seaside chalet, and to save money we bought most of our food for the week? Apart from breakfast which was provided, I prepared lunch and dinner for all of you. You were all in the swimming pool right after breakfast until the evening! (We were in the pool and sea for like 10 hours a day, and I do remember returning home with sun-blackened skin, oops…) That was where your sister learned to swim, and the efforts paid off! We’d go to the beach during the evenings, and watch the fishermen haul in their catch, which was nice.
  • Do you remember shrieking with delight when it snowed in New York? Poor old me was trying hard to re-book flights, as the airport was closed due to heavy snowstorms. After walking two blocks in the icy snow, all you wanted was to get back to the hotel room. (Well I was stupid and had sat on the upper deck of an open-air bus for an hour in winter…) And we almost didn’t make it to the airport at 4am the next morning, with the icy and slippery road conditions.

  

• What did you wish your child could do?
  This is actually more for her to answer, as I am happy when she’s able to do things that she enjoys and finds meaning in.

*Note: This interview is meant for educational purposes, and is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

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