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A mum’s perspective on navigating a child’s illness: A guide for parents and siblings

Bella Heim

Bella Heim

Bella is a mummy of three, writer, and photographer. She's not afraid to admit that she relies on a little red wine to keep the chaos of motherhood at bay. When she's not dodging toys and dirty diapers, you'll find her documenting the wild and wonderful ride of parenthood, and adding a splash of inspiration, creativity, and a healthy dose of mum humour along the way.
Created on Oct 29, 2023 · 6 mins read

When my 23 month old, Charlie, first got sick, I never thought it would turn into something so serious. And before we knew it, he was in the hospital hooked up to all sorts of machines, fighting bacterial pneumonia. Having kids is like wearing our hearts on these little humans, and this heart felt like it was literally breaking. By the time he was admitted, one of his lungs was already blocked and not functioning as it should. Seeing my sweet boy so weak and vulnerable was unbearable. And the guilt and frustration of not being able to make him better, no matter how much I wanted to, was just too overwhelming.


Just as we were starting to see the light at the end of the tunnel, things took a turn for the worse and we were back in the hospital for unexpected surgery. The wait outside the OR was one of the most difficult and trying experiences I have ever faced. Each minute felt like an eternity as my mind raced with anxiety and dread. I couldn’t shake the feeling of powerlessness, knowing that Charlie was inside, being cut open in a cold room, and that there was nothing I could do but wait. The uncertainty of not knowing what the future held, the terror of losing my child, and the constant concern for his well-being was an incessant battle.

Finally, the wait was over, he was rolled into the PICU. I was greeted with the sight of him, so frail and fragile, hooked up to machines, and countless tubes tangled up in and around him. It was a cruel reminder of his suffering, my heart was once again shattered in pieces. As a mother, nothing can prepare you for this kind of vulnerability. The sight of your child, weak and vulnerable, is a cruel reminder of your own limitations as a parent and the fragility of life.

Every beep of the machines and every breath your child takes feels like a small victory, but the fear of something going wrong is always looming in the back of your mind. It is hard work to try to keep hope alive and to find the strength to keep going. It was surely not easy to pick myself up, but I knew I had to be strong not only for him, but for our 2 other kids.

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Charlie and his siblings. Credit: Bella Heim

 

In a situation like this, it is important to realise that it is not just us parents who are affected by a child’s illness or disability. Our other children also have to deal with their sibling’s hardships. As parents, it’s important for us to guide them through it and make sure they feel understood and included. We have to find ways to connect with them, spend quality time with them and support them. It’s not always easy but it’s essential for the well-being of the whole family. Luckily, my youngest is still too young to understand, but my eldest daughter is missing her brother terribly. It’s tough for them to try to understand what’s going on and why this is happening, and it can be confusing.

These are the feelings that a sibling might have (but may not show them):

Guilt: Siblings may feel guilty for not being sick themselves or for not being able to do more to help their sick sibling. They may even feel like they did something wrong to have caused this.

Jealousy: Siblings (especially younger kids) may feel jealous of the extra attention and care their sick sibling is receiving, which can lead to feelings of resentment.

Fear: Siblings may be afraid of losing their sibling to the illness or of contracting the illness themselves. They may also fear that their family’s dynamics will change.

Confusion: Siblings may have difficulty understanding the illness and its effects, which can lead to confusion and a lack of understanding.

Grief:  Siblings may grieve for their sibling’s health and the loss of their normal family life. They will miss meal times, and play time together.

Isolation: Siblings may feel isolated and alone in their feelings, as they may not have anyone to talk to about their experiences.

Anger: Siblings may feel angry about the unfairness of the situation, and may even want to blame others for the illness.

Anxiety: Siblings may feel anxious about their sick sibling’s health, the future, and how the illness will affect the family.

It is really important to navigate these different emotions with your other children. While you may have your family and partner for support, and your own coping mechanisms, young kids do not have the ability to process these thoughts without your guidance and reassurance.

Lastly, I have realised that self-care is crucial. It’s easy to get caught up in the whirlwind of hospitals and doctors and forget to take care of ourselves. I remind myself to take a step back, breathe and do things that make me feel good. Whether it’s talking to a friend, going for a walk or just taking a moment to relax, self-care is essential to getting through such a tough time. And never forget that it’s totally okay to ask for help. Whether it’s family, friends or professionals, the support of others is invaluable. It’s important to remember that we don’t have to go through this alone.

One thing that I am grateful for is that even though this is like a living nightmare that would never end, through it all, my husband and I were there for each other, holding on to hope and love. This brought us closer to each other and how irreplaceable we are in this family we built together.

As I sit here by Charlie’s hospital bedside, watching the machines beep and the medical staff come and go, my heart still aches with the weight of worry and fear. The reality of my baby being ill and unable to come home is a constant reminder of my own helplessness and the unfairness of it all. But amidst the tears and the sleepless nights, I have come to realise that this journey, as difficult as it is, has also been one of the most transformative experiences of my life as a mum.  The unwavering support of my loved ones, the self-care that has helped me to maintain a sense of control, and the effective communication with my other children has been my lifeline. It has helped me to navigate the storm of emotion and I am hopeful that I will be able to come out on the other side, stronger and more resilient.

I know that this experience is not unique to me, and that many other parents out there may be going through a similar journey. If you are one of them, please know that you are not alone. The weight of heavy emotions may feel suffocating, but with time and patience, you will come out of it stronger. And hopefully, soon enough you will be able to hold your child in your arms again, and you know you will never take a single moment for granted.

Lastly, I always keep in mind that even if I am not able to control everything all the time, I was there all the time, with everything that I have. And he knows how much his family loves him. And that is all that matters for now.

Sending you my warmest hugs.

 

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