Having a child with a chronic illness such as juvenile arthritis (JA) can be emotionally draining, and physically taxing. Make every effort to develop a balanced lifestyle that can be sustained for years, rather than burning yourself out in a short time.
Learning to handle your stress will enable you to handle the demands of your partner and children. It may take several years to achieve the right balance, but console yourself with the knowledge that children survive parents’ best and worst attempts to raise them.
Take strength from the knowledge that each member of the family and in particular the child with JA will learn valuable lessons from coping with the disease – lessons that will stand them in good stead later in life.
Adolescents are old enough to understand exactly what JA involves, but are still prey to the fears that beset childhood and the approaching insecurities of young adulthood.
As a parent it’s vital that you learn ways to channel and defuse your stress. Your family will take their cue from how you react. If you have your reactions under control you have a right to expect disciplined reactions from your children – the opposite is also true.
Make arrangements to do whatever it is that helps you deal with the stress: go to gym and pound a punch bag, jump around to pounding dance music, go for a walk, see a movie or do some gardening. Physical activity is generally the best coping mechanism, but some people benefit from sitting still and doing some deep breathing.
You’re also justified in demanding some time for yourself because without it, your ability to cope becomes finite – you will break, sooner or later.
As much as you’re under pressure, so is your partner. Enlist the services of friends or relatives to do some babysitting while you both have a break. You might prefer to lose yourselves in an escapist movie, but you might be better off having a quiet dinner together and actually talking.
For all the pressure that parents are under, children – and the one with JA – will be feeling as much, each in their own way. Acknowledge what each is feeling and encourage them to change the things they can and to accept the things they can’t. By now they’ll have realised that the childhood notion “Mummy and Daddy can fix anything” is just that – a notion.
Once this reality sinks in they should begin to realise that each family member has the duty to ensure that the family survives as a unit. They deserve candid explanations of why their brother or sister needs special care and that they have the opportunity to help make life easier. Remind each one that no-one is to blame for JA and that while it’s a reality, there’s no reason that it should interfere with the joys of growing up. On a fairly regular basis, do something special just for one of the children who doesn’t have juvenile arthritis.
This can be something as seemingly trivial as going out for an ice cream. Planning combined activities can work very well too. These can include going to the zoo or the aquarium.
Encourage the child to exercise
The pain of moving will encourage a sedentary lifestyle, so you may have to be a little crafty in getting your child moving.
Most children love playing with pets. Walking the dog or simply having a romp in the garden can be a great way to stimulate activity. In summer, swimming will work well too, as long as the water is reasonably warm.