Sunday, November 10, 2013

What Not to Say

Have you ever felt awkward and inadequate when trying to give comfort to a person facing a major medical illness?  I used to stumble over my words or just give a feeble, "I'm sorry."  I may have even been guilty of saying, "This is all part of God's plan" a time or two.

Now being the mother of a daughter with chronic health issues, and having been the recipient of lots of well-meaning cliches, I understand that people just want to show their support.  They may not quite know how, but they want to let you know that they love you and are pulling for you.  I appreciate that!

I did want to share a few phrases that, in my opinion, are not very helpful when you are in the midst of a medical crisis.  (Note:  if you're reading this and think you might have said one of these to me, please know that I was not offended and appreciated your support!!)   :)  This is just something that I have talked with other special needs parents about and read about on other blogs, so I fee like it is worth sharing.

1.  God won't give you anymore than you can handle.  This just isn't true.  It's not even really biblical.  CCMS is a whole lot more than I can handle on my own.  I'm pretty sure Reagann's mom is feeling like she can't handle ROHHAD right about now!  I can remember considering this phrase in the NICU and saying, "Ok!!!  That's enough!  I've reached my limit!!!"  The key is that God will give you the strength to handle whatever you are given.  We have this saying hanging on the wall of our living room as a constant reminder that "I can do all things through Christ who gives me strength."  Philippians 4:13.  It says, "God doesn't give us what we can handle.  God helps us handle what we are given."  Check out this blog for more on confronting the lie.

2.  This is all part of God's plan.  At the risk of sounding completely unchristian, please don't ever say this to someone who is dealing with a major illness!  Does a mother really want to hear that it is God's will that her newborn daughter lie helpless in a hospital bed hooked up to countless machines diagnosed with a syndrome no one has ever heard of and a xeroxed page from a medical journal with an almost certain death sentence given to her by the geneticist lying on the table?!?!  Nope.  Is it true?  Absolutely.  Is it pretty awesome to reflect upon as you continue on the journey and are out of the thick of the medical crisis?  I can say it really is.  Is it helpful to hear when you're in the midst of the pain?  Nope.  Don't say it.  Ever.

3.  You're so strong.  No I'm not!  I have screamed and cried and cussed and questioned God with the best of them!  And sometimes when people would say that in the middle of our crisis, I felt like I had to apologize when I would break down.  You shouldn't have to feel bad about being vulnerable and real.  But statements like that made me feel like I always had to put on a brave, positive face.  Yes, our mantra is Choose Joy, and we try.  But do I always?  No.  There have been times when all I could say was this sucks.  (Sorry Mom.  I know you hate that word.  But I think it's accurate here.)  

4.  I don't think I could handle what you go through.  This one really gets me, and I have heard it a lot.   In fact, it's the one I hear the most often because people say it even now about all of the appointments and surgeries.  It's basically saying, well better you than me!  Does anyone really want to face these types of medical struggles?  I don't think so.  My typical answer when people say this is yes you could.  If it were your child, you would cry for a few days, then put your big girl panties on and figure out where to go from  here.  It wouldn't always be easy, but you would do it.  Because you love your child and will do whatever it takes.  And honestly, just because your child was born "normal," (I still hate that word!) doesn't mean that there's any kind of guarantee that he or she will be exempt from medical issues for life!  Pediatric cancer is the leading cause of death now in children!  Car accidents happen every day!  Heck, a bad fall from the monkey bars could result in a traumatic brain injury!  Not trying to scare you into putting your child in the proverbial bubble, but it really could be you crying next to that hospital bed.  And you could do what I do, and so much more, if you had to.

So what can you say???  We have all felt inadequate and even uncomfortable as we try to give support to a friend in need.  I think the card that meant the most to me was the one a friend wrote where she said she had started her card several different times and nothing sounded right.  She finally wrote that she really didn't know what to say, but she just wanted me to know she was praying for me.  That friend didn't have to come up with some eloquent saying to let me know she was there.  She said exactly what I needed to hear.

1.  Let them know you are praying for them, and DO IT!  OFTEN!  I could 100% feel the prayers of so many friends and family.  Don't try to say you understand.  Just pray.

2.  Be intentional with your offers of help.  Instead of saying, "let me know if I can do anything," just go ahead and give a day and time you're going to bring a meal over.  Or arrange to clean your friend's house--without judgement!  :)  Or invite the kids over for a play date.  I never quite got the hang of asking for help, but I was so appreciative to the ones who didn't wait to be asked.

3.  Send gas cards and care packages.  If your friend is traveling to a hospital, gas bills add up quickly!  Practical gifts like gas or restaurant cards are really nice and don't take up space in a tiny hospital room.  :)  Care packages are fabulous too.  Include lots of consumable gifts like on-the-go snacks, microwavable meals that can be heated at the hospital, hand sanitizer, quarters for the snack machine, a bottle of water, a pen (I ALWAYS needed a pen!), or maybe some treats for the person in the hospital--but find out what is allowed first--nothing like sending snacks only to find out the person is NPO!!  

4.  Buy hospital parking passes.  Most big hospitals require a fee for parking (don't get me started on my rant of capitalizing on sick people in their time of need...), but a lot of them sell parking coupons at a reduced rate.  For example, you can buy a book of parking stickers at Hopkins and it ends up being significantly cheaper than paying each time you go in--especially if you are staying overnight.  Purchase some of these parking passes for a friend who is going to be traveling back and forth often.  Make sure you find out about expiration dates and vehicle requirements, but this is such a nice gesture.  Parking, on top of gas, gets very expensive when you do it often.

If you have faced a medical crisis, what do you think?  Do you agree with my thoughts, or did you have a different experience?  Did something someone did for you during your time of need really touch you?  Please share!

7 comments:

Anonymous said...

This is great advice. Thank you for sharing your experiences and thoughts.

Louise H. Beaulieu said...

Oh my goodness...you wrote all of this so eloquently....this is my life exactly!! Could not have said it better myself...a nice useful gift is a calling card to stay in touch with loved ones....thanks for a wonderful story! God bless...

Raelyn said...

Julie....
Very good. Very, very, very good. ;)
--Raelyn

Noella Elliott said...

To be honest with you I never really considered a lot of what you just recommended......which I am ashamed to say. You're right it is the thoughtful little things that make going through what you are a little easier, so you don't have to worry about gas money, snacks, change for vending machines, etc. There is enough to worry about. And I can relate to being unable to ask for the "help" part" and having to be strong all the time for everyone. I feel however that people feel uncomfortable with someone "losing it" and prefer someone to be strong and in control, which is as you say all wrong. It is wrong to deny yourself and what you feel...that is what takes its' toll. And I am at a point in my life where I don't care what people think, had to work on that for a long, long time. Prayers and hugs are on their way.

lifewithlol said...

My mother saw your post and shared it with me, and tonight I shared it with all of my Facebook friends. My daughter was diagnosed with a terminal illness when she was almost 10 months (healthy until that point and then boom symptoms began). I have heard all of the things that you have mentioned and I have felt very much the same way. I have wanted for months to write a post like this, but never had the courage. I think that you are awesome for sharing this and for speaking for those going through the unimaginable. Thank you. - Amanda

Kelly said...

This is so good and so true! The only thing I would is for an older child, small gifts are great. Things like Legos, forgot toys, colors and paper, perhaps an Itunes card if they have an IPad for new games or movies, would be appreciated. While a kids is sick, but often bored.

gail said...

These are all great things. People were, generally, fantastic when we walked through our stillbirth. One of my dear friends said to me, "I'll cry with you when you want to cry, I'll laugh with you when you want to laugh and for those times you want to ignore it, I'll do that too." SUCH a great thing to say because there are a lot of times when you need to ignore whatever bad thing is going on in your life because you just can't be sad for two more seconds. Along with that, I would say, include your friend in things that you might think, "oh, she doesn't have time for it" because she may need to make time to go to the mall or go to the movies for her sanity's sake.
I also never really fully understood the whole giving meals to people until we were given meals and WOW, is it awesome to get a dinner that you didn't have to cook! Other good ideas are to gift breakfast foods (muffins that they can freeze and pull out, defrost in the microwave and eat on the run) and snacks are great too.