Rainbow Hills



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If you have several parents together who have children with IBD you will hear a lot of "comparing notes." You will hear the child's medical history, what medicines they are on, the hospitalizations they have had, when they were diagnosed, etc. These will be topics of conversation.

If you ask these Parents, "How do you feel?" you will probably get a lot of blank stares before they start "comparing notes" again. Perhaps they will tell you how their child feels, but I can guarantee, finding out how the parent feels will be like pulling teeth. Now, the therapists in the crowd may shake their heads. But as a parent who would be giving you one of those blank stares, I have to come to our defense.

First of all, do not discount the therapeutic action of "comparing notes." It is very helpful on a lot of levels. You are actively getting information that will help your child. In one conversation I had with other parents, I mentioned that my daughter got a funny headache that always foreshadowed other symptoms. The doctor had told me that this is not a symptom of IBD. Another parent said her child got a headache also and another told me it was a cough that let her know a flare up was starting. This confirmed for each of us that we should trust our knowledge of our children.

Sharing information is also very helpful in putting our experiences into perspective, in learning how other parents deal with similar situations, and in gaining confidence in our ability to deal with these situations.

So "comparing notes" is very valuable. It is also important to deal with our own feelings, so why is this the last item on our "to do" list.

There are two reasons I see as to why one gets blank stares when asking a parent of chronically ill children, "How do you feel?"

One is what I would call the "Mama Bear" or "disaster instinct" reaction. Think of a mother bear looking up from her berry picking to see her cub in danger. She doesn't sit up and ponder how she feels. "Hmm, I think that I am very angry at hearing little Cubby squeal in terror," or "Oh, I am so sad that Cubby baby is in pain." No, she charges over and lops off the head of whoever or whatever is messing with her cub. In some ways, we are on permanent charge. It is almost ludicrous to us when someone asks us how we feel. It's difficult to answer that question when you feel danger imminent.

The other reason for the blank stare reaction is massive guilt. I may be angry at the doctor that didn't know my daughter had Crohn's for 6 years until she ended up in the hospital, but some part of me really wonders how I didn't know.

Don't we all go through that? Even though our reason may tell us differently, some part of us is a mass of nagging guilt. Unfortunately, this guilt is often what keeps us from taking care of ourselves.

Whatever the reason or the feeling, it seems obvious to me that the appropriate question is, "How do you take care of yourself under all the stress?" If we are feeling like we are on emergency call all the time, we are going to wear out fast. And then, we will be unable to really be effective in helping our children.

I found this out the hard way. The first time my daughter was hospitalized, she left the hospital after a week feeling fine. I left with Bronchitis. The next time she was hospitalized it took me getting sick again before I could see that I had to consider what to do to take care of my own needs, as well as hers.

I learned that even when your child is in the hospital, there are ways to take care of yourself. I had friends that came to visit me. We'd walk down the hall to a visiting room and I'd get a chance to tell someone what was happening.

This helped immensely. Sometimes, I would take a walk when my daughter was watching TV, sleeping, or playing Nintendo. These were times when she didn't miss me at all. One of the hospitals we were in had a latte bar. While it wasn't the same as hanging out at Starbucks, I found I looked forward to a short break there

Whether your child is in the hospital or not, try to take care of yourself before your are at the breaking point. In the long run, you will be much more help to your child. And the truth is that there is not an emergency every minute . It may feel like that at times, but we have to learn to relax anyway.

Think of things that help you. For some people spacing out on TV is a break, curling up to read a book works for others. Meditation or journal writing can be of great help. How about a hot bath or cup of tea? My favorite is to take a walk or get a video and Chinese food.

The important thing is to notice that you need some time for yourself to recuperate and rest. Don't wait until you are a basket case. Try to program some time for yourself into your everyday schedule.

And sometimes you do need to cry on someone's shoulder or just get a hug. At other times, your recovery may be found in an afternoon out shopping or having lunch with a friend.

Ask for help when you need it. Friends and relatives often appreciate that there is something they can do.

So, these are a few suggestions that I have tried. The important thing is to take care of your mental and physical self. Next time you are "comparing notes" with other parents, you might ask, "How do you take care of yourself under all the stress?" Be sure you find the answer for yourself. There are people who care about you. Be one of them. I wish you and your child well.


Copyright 1996 - 2002 Arlyn Serber