Use My Voice

Speaking up about the issues I can't get out of my head or heart.

What Not to Say to a Parent of A Child With A Chronic Condition

on April 25, 2013

I have seen and read a lot of articles/list on “Things not to say to…” mother of an only child, parents of biracial children, etc. I have found these list at time humors (because who would say some of these things ) and often insightful because they remind me that I’m not walking anyone else’s parenting journey and they are not walking mine. So here is my contribution:

Things not to say to a parent of a child with a chronic illness or condition:

1. Have you tried..,,
We know you mean well and that you are just trying to help, but when dealing with a chronic condition your head is swimming. There is so much information out there that it becomes overwhelming. Now, that being said if you or your child has the same or a similar condition and have found something that works then yes I want to hear from you!

2. Are you sure all of that medicine is good for her?
Trust me when I tell you that something inside of me sinks with every time I give my daughter her medicines. I see the immediate side effects of her albuterol when she is standing on the entertainment center hugging the television. I have sat through many prednisone induced meltdowns. I have also though watched her sit down on the playground because she can no longer play because her coughing is so strong. My husband and I have held her for countless nights while she is unable to sleep because of her coughing. We made the very hard decision to remover her from the preschool she loved because she could not stay healthy. So for now I will keep a watchful eye on her medicines but give them to her with hopes of improving her quality of life.

3.It’s just a cold…
For a child with asthma (and I would imagine other chronic illnesses) there is no such thing as just a cold. A “cold” for us last two-three weeks. It involves breathing treatment 4-6 times a day for a week after all symptoms are gone. It means not sleeping.

Which brings us to the last one:

4 You know you can’t insulate her forever….
I think this one stings the most for a couple of reasons. First, I know I’ve said it and thought it before I was parenting a child with asthma. Parenting is nothing if not a lesson in humility. Second, I am an extrovert and so is my daughter. We thrive on being out with people. We like to make friends and go places. Staying home does not come home easy to us. We have had to learn to stay home more. We have had to learn that for now there are some places that just don’t work for us because the germ factor is high. We found an amazing indoor play place last winter that we all loved. However after about 4 visits I realized she was sick and the asthma would flare up within 48 hours of being there. So if you plan a birthday party at one of these places I am sorry but Maggie and I won’t be there.

So what can you say or do?
Be understanding when we have to cancel plans. Asthma can flare up without notice and sometimes we have to cancel at the last minute. Trust us we do not want to. Keep asking us though because it can feel very isolating being home with a sick child and it s nice to know people care about us. Winter is over and the pollen will be gone soon, so hopefully we will re enter the world for the summer and we will be looking for playdates. Not at indoor bouncy places though.

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