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 the easiest part! Unlike the 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.
When Your Child has Special Needs or Chronic Illnesses
Being a mother to a child with special needs or a chronic illness can be extra rough. 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 Mother
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.)
A RARE INTERVIEW WITH MY OWN MOTHER!
- 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 to a chronically ill child? 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.
- 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.
- 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.
*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
Read More: What’s it Like to be the Father of a Sick Child? (Precious Insights from My Own Dad!)
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For More Insight:
- How My Mother Kept Me Alive (shadowsedge.com): http://bit.ly/2wV0P6X
- 9 Questions About Love And MS On Valentine’s Day (trippingonair.com): http://bit.ly/38Bh9Z1
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Rereading this, I want to send your mom a hug. It’s hard not to blame myself for my genes that led to both my children struggling with chronic conditions. Also, not knowing enough about things earlier so that I could have helped them before things came to a crisis. I know, though, they have their own life and journey and everyone has issues of some sort, but it’s so hard when our children hurt.
It was so beautiful read your mum’s thoughts Sheryl. It reminds me of when I see sadness and struggle in my mum’s eyes while she tries to be strong for me.
It’s incredible the strength family can have and what their support means to all of us.
I’m so glad you have such support from your mum, it sounds as though you have a lovely relationship.
Haha we have our times as you know. But family is family! 🙂
As a special needs mom myself, I really appreciated this. It is a timely reminder of what’s most important, especially now.
Hi Marya, yes especially in these times, it really can be extra hard, with everyone home, and reality up close. I am not a mother, so I can only try and glean insights from my own mother. I am sure you can actually relate to her much more than I can, even 🙂 Sending you lots of hugs.
My Mum passed away ten years ago and until the day she died, she always had a feeling of guilt about my pain. She often said that she wished she had pushed to see other doctors. I always tried to tell her not to feel like that, but I guess Mums just don’t like to see us ill or in pain and wish they could do more to help. She also told me often that she was proud of how I have coped and I told her that I got that from her. She was a pretty amazing woman.
Lovely post, Sheryl.
Thank you for sharing about your amazing mum, Liz. Yes you’re right, I guess it’s something parents, especially mums, can’t seem to distance themselves from, having borne us. 🙁
Sheryl, you have just had me in bits as I turned this around as my Mother and as an 83 year old I can still see most of this in her, what a fabulous post…hugs xx
Thank you, Rachael. It seems like almost all mothers are the same despite their many upbringings and cultural differences, hey? 🙂 Sending hugs.
Your mother sounds amazing, it seems like having a strong faith has been her rod through all of this. I have a sick daughter too, she’s been ill for a very long time, so when I became sick too it was so difficult for all of us. I think I’m doing a good job of looking after both of us. Well, we are both still here xx
Hi Anne, well done for doing your very best 🙂 I’m sure your daughter appreciates it tremendously, too. Yes my mother is very religious and religion can be a strong pillar of support when all else fails, I suppose! Sending hugs x
It was so nice to read this post. It reminded me of how I felt raising my youngest son. He was diagnosed with cancer when he was 3 years old. We spent so much time in the hospital and in the doctor’s office. He is now 19 years old and cancer free, but there were many years of treatments and tests. Maybe I should share this with him.
Hi Kathy, wow that must have been such a harsh experience, to say the least 🙁 I hope he is doing well these days? Send him my regards, and sending hugs to you 🙂
AWw I love that you interviewed your mom for this. What a wonderful idea, and what great insight she’s able to give from her perspective. (And thank you to your mom for doing the interview and offering her perspective).
I also wanted to let you know that I nominated you for the Disability Blogger Award! I love your posts and the linkup party’s and all you do for the disability and chronic illness community. Details are here: https://spreadhopeproject.com/2019/05/10/disability-blogger-award/
Thanks for the nomination, Maya! Your questions do sound interesting, and great answers to Chronillicles’ too!
Haha yes I thought it might have been interesting to get her thoughts down on paper too 😉 Sometimes they want to tell us stuff that can be a bit sensitive, and getting it down on paper ‘formally’ helps to neutralise the sensitivity a little, if you get what I mean!
This is such a good idea, and an incredibly touching interview. It made me wonder what my own mother would say to these questions. The part about expectations breaking her heart made my heart hurt, I think my mum feels like that sometimes, too. Thank you for sharing this ♥ ♥
Caz xx
Hi Caz, would love to read your mum’s responses, too 😉 Yea I think sometimes I get frustrated when she doesn’t understand certain aspects of my diseases that I sort of expect her to, because she’s my mother. But that’s also quite unfair, and we did talk about it before. She’s just really not the ‘sit and research everything’ type of person, but she shows her love and concern in more tangible ways. 🙂
Beautiful post, thanks for linking to mine, sometimes it’s only through the eyes of our Mothers we realise exactly what not only we have been through but also we them. xxx
http://spoonfulsofglitter.co.uk/an-open-letter-to-the-mum-in-pain/
Hi Jen, you’re most welcome. Yes, it must be so difficult to be a mother to a sick child, mostly because they feel heartbroken all the time 🙁 Sending you good thoughts xxx
A friend once told me, “You’re only happy as your as your unhappiest child.” Your mom has done a lot to help you live your best life despite chronic illness.
Wow Katie, that’s such a powerful thought and statement. Really says a lot about what being a mother is like. Sending love to all the mothers out there.
Beautiful ? Really interesting too, and I bet it was insightful for you as well xx
It certainly was insightful, even for myself! 😉 xx
Very much appreciated as the mum of a disabled child myself xx Lowen @ livingpositivelywithdisability.com
You’re most welcome, glad it was an inspiring read for you 🙂
This was a wonderful read for Mother’s Day. Thank you for sharing!,
Most welcome, Marla! x