What Not to Say

As the mother of a daughter who has a medical condition, I thought I would take this opportunity to tell others what NOT to say to someone in my position.  This post idea came to me this morning after receiving a text from a friend.

My sweet daughter Miss Optimism has a severe lung condition.  Lately, she has been struggling more than usual and yesterday, I posted a status on Facebook asking people to please pray for her and that she had an appointment this morning and we would know more after that.  At the appointment, I was told that she has only 50% lung function right now.  That is a significant drop of more than 20% in just a few weeks, so was not good news.  The Pulmonary Specialist changed some of her medications and also quarantined her to inside the house and asked that she wear a mask around people other than our family as her immune system is so compromised right now.  Not good news.  I had to tell my 9 year old that it will likely be months before she can play in the backyard again or go to a playground.  Not good news.

As I left the appointment, I reminded myself that I need to keep my spirits up and keep things in perspective.  A year ago, before she began getting injections of one of the drugs she’s on now, her lung function was 23%.  We were a regular fixture at the hospital.  Going outside was obviously always out of the question.  I just prayed every night that she would see morning.  So, today, I chose to remind myself of how far she has come and to stay positive.

Shortly after, I got a text message from a friend asking me how the appointment had gone.  (for those wondering, phoning, e-mailing, or texting to see how an appointment has gone is a very good thing for a friend or family member to do.  It shows that you care, that you were thinking of that child, and that you remembered the appointment.)

I texted back that her lung function was not fantastic, she had been put back on a yucky medication, but that we were going to be able to continue to care for her at home.  A few minutes later, I got the following text:

“What is her future prognosis?  How long do they expect that she will live?  Will she ever be able to have babies?”

I was floored.  I am a MOTHER.  As a mother, it is hard enough to watch my daughter suffer and not be able to live a “normal” life.  As a mother, it is only natural that I worry.  I have to work really hard on the worry because if I let myself, it has the potential to debilitate me and I need to be there to take care of my daughter and my other six kids.

When Miss Optimism is sick, I never know how things will be from one day to the next.  I have a hard time even planning meals or playdates because potentially, we could be at the hospital.  I have to take it one day at a time.  There are days when my plans have to change simply because I got no sleep the night before.  I can only think a day or two ahead.

If I allow myself to think about the future, I might not want to get out of bed in the mornings.  I need to concentrate on the here and the now and I need to make Miss Optimism’s life the best it can be under the circumstances.  I need to think of ways to make her life fun while she has to be quarantined to inside the house.

Last year when Miss Optimism was at her worst, I made the mistake of asking about her prognosis.  I was given a life expectancy for her that frankly, I will never be satisfied with.  I decided right then and there that I would never ask again.

God has already numbered the days of her life and of mine and only He knows that answer.  Nothing I do, not even obsessively trying to control every little thing in her life, is going to change the outcome.  By giving in to accepting her prognosis, I would be saying that I don’t believe that God is in control.  I would be giving up on Him healing her.  I would be giving up on a miracle.  I would be giving up on my daughter.  And that is something I will never do.

So please, if you have a friend or family member who has a sick child, do not ask them that.  It will only add to their worry.  (I had never considered if she would be able to have babies.  Now I am thinking about it.)  If you have a sensitive question that you feel REALLY needs to be asked, do it in person, not via text.

So what should you say?

“I’m thinking of you.”

“I’m praying for you.”

“In what way can we pray for her?”

“What can we do to help?

“Can we bring a meal or help with the other kids?”

“Do you need anything?”

“Can I bring you over some chocolate and a hug?”

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