Dealing with my Non-chronically ill Children in the face of Zoe's SJIA

I have recently been asked how I have dealt with Paul and Mia (Non-chronically ill children) in the face of Zoe's illness and when I responded to the question I was asked to add it to my blog. So this is how we have dealt with Paul and Mia throughout this time of trial. By no means do I think this is the best and only way to deal with siblings of a chronically ill child but it has and does work for us.

Since the beginning we have not tried to shield Paul and Mia by hiding information or excluding them from conversations. They are a part of all of this whether we like it or not and they love Zoe just as much as Willy and I.

A lot of our reasoning of keeping communication open and simple to Paul and Mia stems from my own childhood. Admittedly I was a lot older than Paul and Mia but when my Mum was diagnosed with Breast Cancer and given only 15% chance of living through that year, no one would tell me anything and I actually found out most of what was happening when I eavesdropped on a telephone conversation my Mum was having with her brother.

I was hurt and angry that no one told me and that no one was honest enough with me. Now I know this method of “deception” was thought of as “Protection” by the Adults in my family, however -Deception- was exactly how I thought of it and I didn’t want my kids to ever think they were not important enough to tell. To a child’s mind that is what it comes down to… I felt that I wasn’t important, wasn’t in on the big secret, wasn’t accepted and therefore not told.

When Zoe first got sick Paul was 8 and Mia was 6 and they were old enough to understand. There was so much stress in our house, a few tears and many whispered discussions and they both knew something was terribly wrong with Zoe because she cried all night long and couldn't walk or crawl any more.

So we explained that Zoe was sick and that she was in a lot of pain ALL of the time. We said that the Doctors are trying to find a medicine that will help her but at the moment there is nothing that will make her completely better. As things progressed we explained things as we went.

We started Zoe on Kineret which was a needle every day at home. Paul would get the needle out of the fridge an hour before we had to administer it and Mia would get the alcohol swabs and the needle box. We gave them the choice to be in the room with us or not because I figured if we shut the door and they heard Zoe crying they may imagine worse things than what was actually happening. They were really brave and wanted to stay. They would give her kisses and cuddles after and it was just a part of our morning routine.

 
Mia is the type of child who needs to have a lot of communication before anything new is going on in the house. That does not stop them worrying about Zoe. Mia has nightmares about Zoe dying or going to hospital via ambulance. So subconsciously I know it still affects them no matter how open we are about Zoe’s illness.

Since Zoe has started Actemra the kids know that Zoe has a weakened immune system and that we have to be careful about illness and so on. They come in the house and wash their hands with alcohol hand wash and if they are sick they don't approach Zoe.

 
They are still rough with her and believe me Zoe is right in the middle of everything. From sliding down the stairs on her bum to jumping on beds and climbing on tables etc. She knows her physical limits and yet still pushes them continuously, which we encourage to a certain extent. 

The most important thing for us was to let them be normal as much as possible. They are siblings and need to create a healthy balanced relationship that all siblings have. They will hurt one another but they also learn from that.

Paul is a protector by nature and Zoe has him wrapped around her little finger. He will give in to her as soon as the first tear drops. lol. We also bought Zoe a medical ID bracelet and it is not common here in France and we taught Paul and Mia how to read it and what needs to be done if we are not available or able to talk to anyone if Zoe needs help. So when there is a question asked about it, Paul or Mia usually jump in and explain it. Their words are "My sister is sick and these are her medicines and these are her doctor's numbers and they can't fix her but they are helping her". I leave it at that.

 
You will find what works for your family and you know how much your child can take in and accept without it being an overload of information, the key is to find a balance. Don’t stuff information down their throat if they are not interested or asking questions. Maybe wait for them to approach you with questions first. Body language is always a good give away. If they start jittering then they have probably had enough information to digest for one day, so go with your gut and you'll be fine. 

Here is a small Video of Zoe trying to walk again for the first time after 8 days of Kineret.