Family life is complex. We all wish we had the perfect happy and healthy family and jobs providing good income and giving us lots of family time. However, the reality isn’t always perfect. If you have a child with an autoinflammatory disease, you will know there are added considerations. Look at the articles here that address some of the challenges faced by a family when a child has an autoinflammatory condition. They may also help you understand that you are not alone.

Balancing sibling love and care

Caring for a chronically ill child takes a toll on the whole family and can create challenges for healthy siblings. Family routines may change, family life may alter, which can create feelings of uncertainty or confusion. Siblings may have to be mindful of their brothers or sisters' needs and be a little patient. At times, siblings may also feel a little frustrated and unable to fully understand what parents are going through, and why they dedicate more time and attention to the ill child. Parents love their children equally. As parents, you know that, and deep down, your children know that too, but sometimes the brother/sister of a child with an autoinflammatory condition might not see it that way.

Important foundations for coping with this challenge can be put in place, starting with talking openly to your children about how they are feeling – the good, the bad and the ugly! Once shared, a feeling or issue can be dealt with, and hopefully overcome. Other approaches to consider are:

  • Explain your child’s illness to their sibling and why, at times, they need special care and attention
  • Set aside space for one-on-one fun and quality time with your children who don’t have an autoinflammatory disease, to ensure they feel special and loved
  • Put ‘family nights’ in the diary when you can do something as a whole family so no-one misses out, even if it is just watching a movie together on the sofa
  • Hug all your children often and tell them how much you love them
  • Keep a detailed diary so that all your children’s appointments and commitments can fit in as easily and fairly as possible
  • Initiate a family motto to ‘keep lines of communication open’; always being honest with each other and saying what is on your mind
  • Include siblings in the treatment and care of their brother or sister who has an autoinflammatory disease so they start to understand more about it

You may also want to think about talking to other parents of children affected by a similar chronic illness to gain insights from like-minded people on some of the practical or even psychological challenges faced in parenting a child with an autoinflammatory disease.

To have and to hold: keeping the relationship spark alive

Keeping the flames of passion burning is no easy task for many couples. Throw children into the mix and you may find yourself wondering if you'll ever get any alone time again! Add in a sick child and things get even more difficult. But being a parent of a sick child doesn't have to mean being romance-less. From turning off technology to turning on the physical contact, discover five tips to consider if you’re trying to keep your relationship on track.

1. Check in at least once during the day

Touching base one or two times throughout the day will keep the lines of communication open, which is an important tip for a happy marriage or relationship of any length. Send a text, chat during a break or even type up an email if time is limited. Or consider popping a note in their bag so they find it when they least expect it. And it shouldn’t just be about the children or household activities.

2. Make a point of increasing physical contact and scheduling time to spend together

Increasing intimacy with your partner is as easy as increasing physical contact. Every chance you get, steal a kiss or a hug, or simply hold hands while walking. Time spent alone, away from the demands of life is also essential for the health of a relationship. Consider planning a monthly date night. You can go to your favourite restaurant or visit the place you first met. Not only do you have the date itself, you also have the anticipation of the time alone together. It’s important for you to have something to look forward to so you can keep that spark alive.

3. Turn off technology

Alone time is hard enough to find with the obligations a home and family brings. Boost your romance by turning off the technology, like mobile phones, the television and email when you are trying to spend time alone together. Ok, this won’t always be possible when you’re out of the house but when you are in the house and your child / children are asleep, at least turn your phone’s settings to vibrate so any emergency calls still come through. Email will still be there later!

4. Put the kids to bed early

Even if it is just once per week, getting 15 minutes more of alone time is like striking gold. Scoring some extra couple time will make you better parents in the end, so don't feel guilty about putting the kids to bed a little bit early once in a while. More sleep is good for them!

5. Present a united parenting front

Instead of battling one another, feeling like you're on the same side will make your partner more attractive to you. So when it comes to parenting, try to support your sweetheart, even if you don't fully agree.

Learn more about HIDS (hyperimmunoglobuiln D Syndrome)

HIDS is a rare auto inflammatory disease, and one of the periodic fever syndromes that presents in early childhood.

The Science

December 2015 - GLDEIM/ACZ885/0044