FreeImages.com / Ivan Prole
That’s right. I’m going to be that person who gives unsolicited advice to parents of children with chronic diseases. Unlike other forums, you have a right to stop reading now and avoid this advice all together. No harm, no foul. But if you care to read on, then thank you for indulging me. Since I’ve been there, done that, I feel I have a little bit of real-life experience that some newbies might actually want to hear.
So, here it is in a nutshell: Remember, it will be ok. Let’s break this down:
It’s ok to let your child, even little ones, have a say in their medical care. We may think we know what’s best — boy, could I tell you stories where I messed this up! — but we aren’t living in their bodies.
When they turn 18, they will have to manage their own care, so teach them early what to expect and how to advocate for themselves. If they don’t like the way a medicine makes them feel, then as a family, you should talk to the doctor to see if there are different ways to take the medicine to avoid some of the side effects. If they want to have their methotrexate injections during their favorite cartoon show while eating mac and cheese and holding the cat, then do it. These small moments of empowerment are making big impressions in a life where they feel they have very little control at times.
It’s ok to treat them as “normal” because they want to be seen as normal. We might feel the urge to hold our children close and protect them. After all, we don’t want to see our children hurt physically or emotionally. Letting go is especially hard when our children have a chronic disease.
Have your child experience a day at the pool when she has a psoriasis flare, and be right there to hold her hand during any stares that come her way, especially if she is embarrassed about her skin and hesitant about the outing. Use this as an opportunity to educate and show her and others that this disease does not define her. Show her how to be strong. Nothing can be more normal than a child playing in the pool on a hot day.
If your son is determined to run track, let him, even when he is in pain from juvenile arthritis — with doctor’s approval, of course. It’s ok if he doesn’t win the race or even comes in last place. You’re enforcing the idea to never give up. Playing sports is a normal part of childhood. Don’t take that away if that is something your son or daughter wants to do.
It’s ok to put yourself first sometimes. You have the right worry. You have the right to be sad. You have the right to feel your child was dealt a bad hand. You have the right to scream out of frustration. Your child has a chronic disease, so of course you will be completely overwhelmed at times with doctors, symptoms, outcomes, school issues, and more, but you cannot let these emotions consume you. Ask for help. Whether it be from a trusted friend, a therapist, or an online patient community. You need support and to feel you are not alone. Your health is just as important as your child’s. Make sure you seek help when you need it. (The Arthritis Foundation and National Psoriasis Foundation are great places to start if you are seeking support for dealing with juvenile arthritis and psoriasis.)
It’s ok to be just ok. Not everything that comes your child’s way will be great. Not everything that comes your child’s way will be horrible. I think “ok” is a pretty good spot to be. After all, the same is true for all children. It’s just that children with chronic diseases have a few more obstacles to overcome. And let me tell you, they will overcome them, or they’ll find some pretty cool ways to deal with them. Don’t sell them short. They are strong and more “ok” than you think.
Our family has certainly learned a lot on the job. I’m no expert. I’m just a mom who’s been through it. Parenting a child with a chronic disease isn’t easy for you, and it certainly isn’t easy for your child. I’m not saying life will be rosy. There will be tears. There will be setbacks, but there will also be triumphs and victories you never imagined. Give your child the chance to experience life without being bound to their disease and just see the amazing results. It will be ok. Hang in there.
