What Should I Say?

Tuesday, February 3, 2009

A few months back, Mike and I were approached by a couple asking for advice on what to say to their friends that were about to have a baby born with a pretty serious diagnosis.

That's a good question.

I'm not sure if I have the answer or even if there really is an answer. I have some thoughts...mostly things that I liked what people had said to me and how they treated me. I also could make a list of things that I did not like said.

I realize in tough situations, each person grieves and processes differently. So my thoughts may apply to the next person or they may not. That right there is why you should never judge. To each, their own.

The only behavior I feel is unacceptable in your grief process is if you're hurting yourself or other people.

In our time of grief, Mike and I promised to stay kind to each other even at the height of our stress level. That can be difficult to do when a person is sleep deprived and stressed but it's so important. We weren't perfect at it, but it's a situation that doesn't require perfection in order to do a good job. There were times we spoke to each other more harshly than intended but we were quick to realize our wrong and quick to forgive each other. A simple, "I'm sorry, let me change the way I said that." is all it would take to restore the love.

Probably the one phrase Mike and I heard the most when I was pregnant was: "God does not give you more than you can handle." We got so tired of hearing this!! If that is true, that God does not give more than we can bear, then we felt we were maxed out. He better not dish out anymore.

Another phrase I heard that I did not like was, "you must be such a strong person for God to allow this to happen to you." My response to that was, "Well then I wish God would look upon me as weak."

I really appreciated the times when people affirmed my feelings. I felt encouraged and supported, not judged by that. One woman said to me, "I have thought about the fact that this must be extra scary for you, with Cayman being your first child." That was true and something I had not shared a lot about. When my feelings were affirmed I felt safe and found great comfort in talking with someone that listened with a non-judging ear.

A lot of people seem to fall under the assumption that they need to say something positive that will ease the burden. There is nothing that can ease the pain.

I always appreciated the people that found a healthy balance between not making light of the situation while not handing out pity either. I understand that that is a fine line. They were the people I felt the most safe with. It was scary for me to leave the house and be around people after word of Cayman's diagnosis was out. I didn't want to be stared at, picked over, evaluated, and discussed. It bothered me when I could obviously see people steer clear of my presence because they didn't know what to say. It was yet another reminder of our sad news.

I enjoyed receiving hugs and compassionate smiles...oh and I can't forget the cards that were sent in the mail. I'm a sucker for good 'ol fashion snail mail! I feel loved every time!!

Well that's about all my thoughts for now. There's lots more that keep coming to mind but really there's one staple you can always fall on that is right, and that is be a non-judgmental ear.

***To my readers that have been in a situation of grief, do you have anything you would add of what you liked and/or did not like said to you?

9 Showin' Comment Love:

Tsquared417 said...

Perfectly said Kristen. I thought I would puke if I heard the "god gives you what you can handle" and "you must be so strong" crap one more time. I just appreciate it when people treat me like a "normal" mom and are kind. I don't need any advice really, just kindness!! :)

The Soldatke family said...

Kristen,

I agree! Cards were so sweet and the other thing I really appreciated was people saying that they were praying for us. Praying for strength and wisdom. Or some would just say 'we're praying'. I always found strength that people were storming the throne on our behalf. I think it was just mainly knowing that people were behind us. We had numberous meals dropped off and they always came in handy when I was so emotionally weary, I couldn't even think about cooking.
So, summing it up, I agree with you; non-judgemental and just being there for us and lifting us up.

Michelle said...

Ditto on the "only being given what you can handle" thing. Gets quite old and one doesn't really feel that they are "handling it" when it's happening.

I was happiest when people would just say "I'm sorry, let us know if there is anything we can do" and then move onto the normal stuff like - what blanket are you working on for him now?

I also didn't mind when people would ask about the plan for tests, procedures etc. It always made me feel better when I thought that we had a plan and it made me feel at least a little like I could control something - even if it was nothing but making sure we had all the appointments and such. It just gave me something to focus on doing rather than just worrying.

But that initial "oh no" said in a tragic voice was just about the worst. It was much better to have someone drop off a meal while talking about the weather than to have someone continually tell me how awful it was that I was going through all this.

Jennifer said...

Hi Kristen. :c)

I agree with everything you've said and the comments as well. While we were pregnant, I really hated the extremes - people telling us all the stories of babies who were born perfectly healthy, basically brushing off our fears as unfounded, and people who pitied us. The "God doesn't give you more than you can handle" line is one I just can't stand anymore. I agree that it certainly doesn't feel like you are handling things while you are going through it. I told Kirk at one point that we don't really have any other choice but to handle it, so the comment just doesn't make much sense to me. You either handle it or... what? Check into an asylum?

After Elijah was born and we went through the initial hard phase with him, we have been extremely blessed. He is doing so well that we are often left not knowing what to think or where we belong. These days what I hate are comments about how he seems so normal. I guess I just hate the word "normal". Yes, he is doing well. What is normal anyway? He still has some minor delays and, even though he hasn't had any major medical issues since he was a month old, that doesn't keep me from fearing them. I guess I feel like my fears are again being brushed off as unfounded. I feel like I am being vigilant and observant. Others say I am worrying over nothing.

What I loved the most were the people who were just kind to me and loved me. I loved when people could be supportive without minimizing what we were facing or acting like our world was crushed. After Elijah's lungs weren't mature and we missed his first "birth" date, I was emotional and worn out. A dear friend who understood all too well came to my home. She didn't tell me it was for the best, it was better for him for us to wait or any of the other stuff I was hearing. I already knew all of that. She just comforted me and gave me a foot rub. That was such a wonderful act of kindness and is what I hope to be able to do for others.

(Oh my word! I'm sorry I've just written a book!)

Lisa said...

I think that it is so nice to know that people are thinking of us during our 'rough times'. Cards, emails, phone calls, comments on the blog. Somehow that makes it so much more bearable...to know that there is so much love and support all around.

I have never taken offense at anything that was said, even if it didn't come out quite right, because the fact that someone wanted to offer their comfort to me was good enough. I personally have a hard time finding the right words sometimes, and so I figure it's like that for a lot of people.

My advice: always be a good friend and just 'be there'.

Great post Kristen!

Tara said...

Honestly if I hear you "supermom" one more time I might just puke... We do what we have to BECAUSE we love our childrenn and thats what being a parent is about....

Taking it as it comes is the only thing anyone can do... When you have good days celebrate them, when you have bad days celebrate those too.. You never know... Pray like you never prayed before... Have faith...

Kadynsmommy2007 said...

Oh boy...I have gone pro with this section. This gives me an idea about a blog entry to.

I don't want to leave a full 8 million word comment here lol.

I love what you have written especailly since today was a rough day for Kadyn. (it's in my blog, well I am going to type it after this.)

Everyone thinks they are being nice when they say some things, when in reality they are making grief a little worse. Yes we are strong, not because we want to be but because we have to be. Our children wouldn't be where they are today unless we forced ourselves to be stong for our children.

The one phrase I get all the time " I don't think I'd beable to do what you do" This I will blog about because its a big RANT over that one.

Well said Kristen. Thank you for putting a smile on my face on such a gloomy day :-)

Josephine said...

I'm with Lisa that I never really took offence at what people said when Avery was diagnosed, because I knew they meant well, even if I'd heard it all a million times before. What got to me was afterwards when people seemed to think that her problems were all behind us after she was born, and so when it started to be more evident that she wasn't "normal" because she wasn't crawling or walking or whatever, people seemed surprised, and I even had one man tell me that "If you carry them around too much then they don't want to learn to walk". I hate when people judge me as a parent when they have no idea how hard we work. Also, avoidance is annoying. Don't shy away from us because you don't want to ask what's "wrong" with my child. I'm perfectly happy to talk about her - give me an opening and I will talk to you all day about what a truly amazing miracle she is. Also, don't complain to me when your child starts walking "too soon" and you wish you could have enjoyed your stationary baby for longer. And on top of that, don't complain to me and wonder whether your healthy child is stupid because they're still prefer crawling to walking at 14 months. Seriously. That's hurtful to me as well as your own poor child.
Maybe it's just me, but I don't want people's pity either. People have a tendency to look at me with pity sometimes because I "had such a difficult introduction to motherhood, and it must be so hard to be the mother of a disabled child". It minimises the love and absolute joy my child is to me, and no one has the right to think of her as a burden or a difficulty. That makes me so angry.

Sarah said...

I totally agree with Tsquared417's comments. I too get sick and tired of people saying that stuff and also 1 comment i received was I had Violet and her health probs due to my past sins?? I could not believe my ears!

Anyway, found you blog via Hydrobabe and was wondering if you don't mind I will put your blog on my blogroll?