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Family life is rewarding but also presents challenges. If you have a child with an autoinflammatory disease, you already know about the added pressures and considerations. Take a look at the articles here that address some of the issues of family life when a child has an autoinflammatory disease. They also may help you understand that you’re 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 brothers and sisters. Family routines may change, which can create feelings of uncertainty or confusion. Parents may have to give more time and attention to their ill child than their healthy children. Siblings may have to be mindful of their brother's or sister’s needs and at times put their own wishes and interests second. This can lead to feelings of frustration and resentment towards the child who is chronically ill. You love your children equally. You know this and your children know this deep down, but sometimes it might not feel this way to the brother or sister of a child with autoinflammatory disease.

Start by 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 illness 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 and more about it

You may also want to speak with other parents of children affected with a similar chronic illness, to gain insights from their experiences with daily challenges and some of the solutions that worked for them.

 

Keeping the relationship spark alive

Keeping the flames of passion burning is no easy task for many couples. Add in a sick child and things get more difficult. But being a parent of a sick child doesn't have to mean forgetting about romance. From turning off technology to turning on the physical contact, here are 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 during the day will keep the lines of communication open, which is an important tip for a happy relationship. Send a text or email, or call during a break. Try dropping a note in their bag so they find it when they least expect it.

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, kiss, hug or simply hold hands while walking. Time spent alone together is essential to a healthy 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 will also enjoy looking forward to spending 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

Boost your romance by turning off technology such as mobile phones, TV and email when you are trying to spend time alone together. At the very 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/MKD (hyperimmunoglobulinemia D syndrome/mevalonate kinase deficiency)

HIDS/MKD is a rare autoinflammatory disease, and one of the periodic fever syndromes that presents in early childhood.

Learn more
The Science

NPR/ACZ885/0008E