"It could be worse, it could be ..(fill in the blank).." I've lost count of the number
of times people have said this to us in the last few months. They
don't know what to say and are trying to look on the bright side of
something awful. They are trying to offer us a twisted kind of hope. I wish they would stop.
"At least it's
not cancer." This is the most frequent one we hear. Cancer is a kind of
scary that everyone knows. JRA is the unknown to them. They just
don't understand, and I know that if I do anything other than smile I
will cry, or scream, or cry and scream. It won't be pretty.
In
my mind I know that there are a lot of "worse" scenarios. Forgive me
if I don't see them right now. I have a different sound track in my
head. The ones I hear are the "Might Have Beens" and "the Sounds of Her in Pain"
and they break my heart. I have become short sighted until all I can see is the tragedy in my own household. I don't have time to play "what if". There is neither time nor energy to spend on imagined catastrophes.
Could this be worse? Yes. Are there a million other nightmare
scenarios in which this would be the better option? I don't know, but
I'm sure there are a few. Would a better person be sifting through all
of it to find the silver lining? Absolutely.
I'm not that better person.
The fact remains that dead would be worse. The rest of it is firmly in the Land of Suck. Pointing out all the other ways in which this could be bad or worse doesn't help. It's just playing with words. That it's not the worst you can think of doesn't make it any easier. The fact that you would say so out loud just makes you one less person we can turn to.
So what do you say? What can you say to parents in the Land of
Suck"? You can say, "That's awful.", "How horrible.", or even "Wow.
That sucks." and I with that I will completely agree.
Better yet, you can say "I'm praying for her," and our gratitude will overflow.
15 comments:
It does suck. I love you. Wish I was close enough to hug you and help. It makes me sad to be so far away.
When I was diagnosed with MS,my neurologist said, "Well, be glad it's only MS because all of the other things we were testing you for were way worse." Thank you, kind doctor, for those words of encouragement.
And also, when I had a miscarriage, one of my friends said, "Oh don't worry, about 20% of all pregnancies end in miscarriage." Thank you, kind friend, for those words of comfort.
I'm sorry that well-meaning friends are making things even worse for you. People just do not think sometimes.
I am continuing to pray for your daughter.
I have been, and will continue, to pray for your daughter, you and all of your family. And just remember that for every one of those saying it could be worse another is silently praying for you.
praying :( Watching your child suffer has to be one of the worst things ever!!!! :(
Definitely Praying. There are no words that I can say that will help. Do try to get in touch with other parents who have gone/ are going through this. I have a good friend who would be glad to talk with you if you want to contact me...I would give you her email...
my email...markofhumility@gmail.com
many blessings & prayers.
Amen. And it does suck. Totally.
Praying here. And yes, it so totally sucks. :-(
I wouldn't bother to smile. I would frown. So what if you cried? Crying happens.
I AM praying for her. And you. And your whole family.
Your baby is in pain and you can not make it go away. It sucks big time! I don't know what you are going through. I have no way of knowing because I am not you. I do however promise to pray for your daughter, for her siblings and for you and your husband.
Thanks for writing this. I've probably said equally unhelpful and/or insensitive things to people suffering because I never know what to say. But I hate silver linings, and I hate when people try to make me look at them even when nothing's really wrong, so I get what you mean. We will definitely pray for your little girl. I don't think suck is a strong enough word for what she has to deal with now.
That sucks the big one. Prayers sent.
This does suck. You and your family have been in my prayers, and will stay there.
Just found your fantastic blog through Creative Minortity Report. We have a daughter with significant special needs, including mental retardation. She is only 3 so we are still figuring out what it all means -- no definitive diagnosis. I cannot agree more with your last 2 paragraphs. The response that most gets under my skin is "aren't you blessed" -- because yes we are but who are you to say that?! "That sucks" is just about the best response with a bonus of "prayers" in close second. JRA sucks. I'll keep your daughter and family in my prayers.
It does suck, but I can say from experience, it will get better (and then it will get horrible again, and the you'll get respite again...). Getting there just about might take everything you have until you can't go any more, but you will both find strength you have never known. I must say I would rather be me than you. As in, I would rather be the one going through it than watching my daughter have to. That is a level of suckyness that I can't imagine. That's a pain I could never understand (at this point in my life) and I'll never know how my mother did it. You are both in my prayers. God bless you!
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