Sunday, May 6, 2012

Open letter to parents of sick kids (from a now grown-up sick kid)

Dear parents,

First and foremost, you are doing a great job. You may think no-one sees how hard you try to make things better, but your kids do and they love you for it more than you can know, even if they don’t say it.

The following are not criticisms by any means. They’re just some things that I remember from being a sick kid, that I wish I could go back in time to say to my parents. I’m not a child-psychologist or anything impressive like that, so if you don’t agree with what I say, that’s okay. It’s just my opinion really, and you don’t have to agree with it at all. 

1)      Your child doesn’t want you to feel guilty
Many parents of sick kids feel guilty. Some site genetics as the reason, or choices they made for their children when they were babies. Whatever the reason, your child won’t want you to feel guilty about it. In fact, if they knew how bad you felt, they would probably feel guilty that you feel guilty.
You cannot change genetics. We all have them, and if you trace them far back enough, we all have hidden illnesses in our family trees. This is out of your control, and therefore not something you need to feel bad about.
The choices you made for your child were done with the best intention. Whether you vaccinated or didn’t. Whether you picked them up when they cried, or let them settle themselves back down to sleep. Whether you breastfed them or not. There is no definite evidence as to what causes autoimmune arthritis diseases, and at times either choice will have been thought to be a possible reason. The time spent wondering if this or that caused it, is entirely speculation, and to quote Baz Luhrmann “about as effective as trying to solve an algebra equation by chewing bubble gum.”
Your child has probably not thought about any of these things. If they ask you why they are in pain, or why this happened to them, they are most likely not really looking for an answer. It’s quite likely that they are just communicating to you that it hurts, and that they don’t like the fact that they are sick. They know that you already know, but they still need to be able to tell you.
When they’re older, and question whether genetics or environmental factors the cause of their illness, they won’t do it with blame. They will see the good intention behind the choices you made, and love you for that – not ask you to feel guilty.     

2)      Worry and anger sound similar to kids
It’s absolutely natural to be worried, when you have a sick kid. It’s also perfectly normal to be angry some of the time. Sometimes these sound the same to kids, though. They won’t always be able to tell the difference between “your voice is rising, and you’re frowning because you are so worried on my behalf” and “your voice is rising, and you’re frowning because you are angry at me.”
If you notice that your child reacts as if you have told them off when you are worried, it may be that they are interpreting your worry as anger. Don’t feel bad about this. Every parent, whether they have a sick kid or not, will have this misunderstanding at some point.
If your child is old enough to understand, have a conversation about the fact that worry and anger can sound similar. Explain that you’re not angry at them. Your child may be able to tell you what they’d like you to do or say instead, or you can talk about ways for them to understand the difference between worry and anger. There may be something you can say or do to make it clear for them.
When you’re stressed out it’s hard to think about, let alone change, what your face and voice are doing, but having a conversation about it can help stop it being misinterpreted.

3)      Your child will probably still rebel
Unfortunately, having a sick kid doesn’t give you a free pass on rebellion. Your child will still have all those pesky hormones, and that need to assert their individuality, just like every other teenager.
They may do this in the average way – alcohol, boyfriends/girlfriends you don’t approve of, sneaking out. Or they may start to rebel in a way that is closer to their world of being ill. It may be that they want to be in charge of their meds, and the choices about those. They may reject any suggestion you make, just because you made it.
There’s no simple fix for this, just as there’s no simple fix for the average child or teenager rebelling.
Let them be responsible for their meds if it’s possible to do that. They will need to learn to handle this themselves, and make choices about them, at some point anyway. Keep an eye on it, but try not to intervene unless you notice something of big concern.
If they reject your suggestions of what will help, make the suggestion but don’t try to convince them of it. Even if they say no initially, if you’re not persisting they have nothing to fight you on. They can make the decision themselves, and come back to it. If you argue about it, it will be harder for them to change their mind (or admit that they’ve changed their mind) but if they are able to say no once, then come back to it later on, there is no shame in it for them.       

Mostly what it boils down to, is love them, and keep them safe. Parents of sick kids have the hardest job in the world, and when the kids are grown up, they will look back and understand and appreciate it all.

Yours Sincerely

A (now grown-up) sick kid 
Little Miss Autoimmune  

I wrote this as a resource for World Autoimmune Arthritis Day

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!
*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.

Find the WAADwebsite here

1 comment:

  1. Awesome post! I am going to share this on my JA Moms board.

    One thing that I have done is try to be as honest as possible. If I don't know something then I will find out the answer, but everything that I know that I would want to know if I were in their position I pass along to them. My daughter was sick for years before being diagnosed, which finally happened official just as she turned 6. I tried to explain everything to her so that she understood better what was happening. I couldn't imagine what it must be like to be that little and get herded into doctors offices, lab facilities, hospitals and not have any idea what was happening. Explaining took a lot of the fear out of it. My kids can list their medications, and they help me to remember now (because we've had a LOT of crazy changes) what they take when. That has come in very handy in the hospital when they've tried to give her heart meds at the wrong time! I try to make them involved and give them choices whenever possible so they feel like they have some control. This way they can blossom through their diseases.