Chemo times 2

Some of you have asked about my kids being on chemo. They don’t have cancer, they have juvenile arthritis. JA can cause excruciating pain and deformalities, steal childhoods, bankrupt families, destroy marriages, cause blindness, and even kill. Although for different reasons, the difficulties my family has faced are not unlike the problems of cancer families, but without the public awareness.

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The public’s knowledge and perception of cancer and juvenile arthritis is a touchy subject for the JA community. We know that arthritis can be just as life altering, if not as deadly, as cancer. We also know the general population is not aware of the similarities. It is hard to educate without sounding like whiny, self absorbed divas who want special treatment for their kids.

While both diseases have periods of remission and risk of recurrence, one way or another cancer treatment usually has an end. For many JA patients, treatment is a never ending battle. I have heard heartbreaking stories of JA children who shared infusion rooms with cancer patients and constantly asked their parents when it would be their turn to ring the bell announcing the end of their treatment. For them there is no end.

The mortality rate for cancer is definitely higher. I am thankful that I have not watched my child deteriorate, knowing there would be no recovery. My heart aches for parents who have lost a child. Even in remission, recurrence is a continuing threat. Parents of JA kids in remission have that same fear.

A friend of mine shared recently that her daughter was in remission. I joked that she was asking for trouble. A few days later she was back at the hospital. I felt bad, like it was somehow my fault, though I knew it wasn’t. That friend doesn’t blame me, but the pain is still there. JA parents hurt when one of “our” kids suffers, and we rejoice together on good days.

I won’t pretend to understand what it is like to have a child with cancer. But I do know what it is like to have a child in ICU, their sibling wondering whether they will recover. Both my kids have lived that hell on earth.

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I parent, you parent, we all scream at our kids

No two parents have the same style. They shouldn’t. What works for me isn’t going to work for everyone. I have always tried to keep the lines of communication open. My kids know they can come to me with anything and I won’t yell or have a knee jerk reaction. I may not be happy, but I always try to get the facts before getting upset. The more severe the offense, the more time I take deciding how to handle the situation.

I am also open with them about my past, in the hopes they won’t repeat my mistakes, but learn from them. I make a point to try and adjust the things my parents did with me that clashed with my personality. If one technique doesn’t work I don’t keep beating the dead horse, I try a mule. Or a carrier pigeon. Or…you get the picture.

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My favorite picture

I have friends that take a quite different approach. They manage the details of their kids’ activities, monitor their social media, keep a tight rein on their schedule and do their best to keep them away from bad influences. That works for them. It would never work for me.

With all the medical and emotional challenges we face, I don’t have time or energy to micromanage my children’s lives. I trust that I taught them well enough they can be responsible. I have gradually given them more autonomy, remembering how I was when I no longer had my parents watching my every move. I don’t want my kids to suddenly have freedom without the experience and judgment to handle it.

If you have teens, do you trust them? It will only be a few short years before they have to make their own decisions. Will they be ready? If you aren’t sure, it might be time to ask them some tough questions. Questions about sex, drugs, alcohol, choosing friends, being responsible with their time and money, all those things that teens and adults face.

Do your children confide in you? Do they know it is safe? Are you sure your teens feel they can talk to you about whenever is on their mind, without you judging them or dismissing it as trivial teen drama? Do their friends see you as an adult they can trust?

I’m not so naive as to think my kids are perfect. I know there are things they keep from me. I spend plenty of time praying that God helps them through the consequences of their choices.

But they know I am safe. Their friends know I am safe. They can call me in the middle of the night for a ride home without the Spanish Inquisition on the way home. They can confide in me when they aren’t sure how to handle something their friends have shared. And I keep their (and those friends’) secrets, unless it is something I absolutely believe the parent needs to know. If that happens, I discuss it with my kids before I go to the parents, so they understand why I have to break that confidence. They usually agree with my decision.

I encourage you to ask your kids, wherever their age, some open ended questions and then listen to the answers. Really listen. Don’t judge, don’t try to tell them why they are wrong, don’t jump to conclusions or tell them how they should feel. Ask. Listen. Love them for who they are. Let them see your humanity and imperfections.

And above all make sure they know you are safe. Nobody should be afraid of their parents.