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Dealing With Long Term Child Illness: A Survival Guide For Worried Parents

By Features Desk

Saturday, July 29, 2017.

Having kids should be one of the best experiences of your life, but for many parents who have to deal with a very ill child, it can be a tricky and painful time. Whether it’s a hereditary disease or the development of a serious condition such as cancer, it can have an enormous impact on families from all backgrounds - and can be incredibly scary for all those involved.

Nothing, of course, can prepare anyone properly for the tremendous impact of bringing up a child who is suffering from a severe and long-term illness. There are, however, a few things that can help. Let’s take a look at some of those right now, in our survival guide for parents whose little ones have serious health issues.

The emotional impact

The enormous emotional impact of finding out your child is very ill will take its toll at some point - so it’s important to understand how to see the signs. The pressure and feelings of despair are completely natural and can have a significant impact on your own mental health and wellbeing. And make no mistake about it, as parents of a seriously ill child, it is vital that you can take care of yourself as much as you do your little one. Your own health and wellbeing are just as important as theirs, and they need you fit, healthy and mentally strong enough to give them the best shot of getting through this tricky period.

Yes, it’s going to be tough. But by keeping in close contact with your doctor and joining support groups with other parents whose children face the same challenges, you can get through it. Therapy can help, too, of course, but if there’s one thing to remember during this difficult time, it is to keep communicating with your partner. Two heads are always better than one when it comes to dealing with nightmarish situations, and only by talking will you be able to give each other - and your ill child - the support you all need.

The commitment

Sure, you didn’t sign up for this: you wanted a healthy child like everyone else. You will feel that your situation is incredibly unfair, and it’s okay to have those emotions - and they will come and go over the coming years. But if you want to get through this tough period, you need to commit. Keep positive, and ensure that you give your little one everything they need to lead a life as close to normal as possible.

Embracing the situation and committing to doing everything you can will help you in many different ways. It helps keep your chin up, gives you hope, and although it can be tough and wearing, you will know you are doing all you can for your child.


The treatment

Your doctor is likely to pass you on to a specialist to help you deal with the illness - as soon as there is a diagnosis. And while this is a good starting point, don’t be afraid of asking for more ideas. While treatments such as gene editing and other advanced therapies are still very much in their infancy, they might offer your child some hope. And while alternative medicine has no backing from peer-reviewed research, there are anecdotal success stories that might help you feel like you are helping in some way.

Ultimately, the more professional you see, the more ideas of treatment you will be exposed to. And, as we mentioned earlier, it’s important to keep yourself well, too. Never forget that your child is reliant on you, and needs you at full health - so see your treatments for any illness you experience as important as the one your child is receiving.

Don’t forget the family

When one of your children has highly significant and challenging needs, it’s not uncommon for other kids in the family to start feeling left out. It’s important that both parents in the family share their time and concerns with everyone, even at those times when your little one is experiencing incredibly tough times. Don’t forget, your sick child’s siblings will also be suffering from worry and confusion about their brother and sister’s health. And they have needs that need to be met, too.

While it can be hard to keep everyone perfectly happy all the time, there are a few things you can do. Involvement in the issues is important for your other children, so try to avoid hiding facts from them - however scary. Kids are more resilient than you think and will be willing to help out with their sibling however they can. It’s possible to get help, too, in the form of therapy or counseling sessions - as well as getting ideas from your support communities and groups.

Dealing with the future

When you have a very sick child, it’s all too easy to start imagining a bleak future. There will be all kinds of things running through your head, and if you allow this to take over your thoughts, you can end up in a very worrying place. It’s vital that you try to focus on the here and now, and concentrate on giving your little one the best possible life in the short-term.

The reality is you just don’t know what is going to happen in the future, and catastrophizing helps no one. And when you take on this train of thought, all you are doing is imagining the worst. You might see your child’s end of life, for example, or think about how they will struggle in school. But these are all situations you can deal with when they arise. The reality is that when you think ahead like this, it’s all negative - you won’t be thinking of all the fun times you have had in between. Again, it's all down to being positive, and remember that your child, however ill they are, is still a human being and will have all those little things they enjoy and love just as much as the next person.

Do you have experience raising a seriously ill child? Let us know about your experiences below!

Dealing With Long Term Child Illness: A Survival Guide For Worried Parents

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