"Yes, I know what seizures are because our dog had some before she died"
O-Kay.... Maayyybbbeee I am a little sensitive about the "I know how it is because...." comments I get from folks who have no idea what it is like to wonder IF your child will overcome whatever the issue is, live his life, or be a well rounded adult. But Really? Comparing a scary, choke filled, breath pausing, long lasting seizure of my young child to that of your dog is at the very least insensitive.
And it isn't just that. You name anything and someone is sure to have a stupid comparison that has little the issue at hand. Or people often say things like "but he looks fine now" or "it could have been worse" or other minimizing pat responses.
Parents or caregivers that are mentally, physically, and emotionally invested in the patient already know what they can know about the condition and really wish they knew how to make it all better. There is no simple answer from that article your friend's sister's neighbor's sitter found online on a friend's Facebook page.
Special Manner #108: It hurts caregivers to have their worries and pain reduced by thoughtless (even if well meaning) comments and generalization.
Please remember that no illness or condition is the same and neither are the answers. Be aware of the way you show what understanding you have in a respectful way that doesn't belittle the persons, their condition, or what they and their caregivers go through.
Really, if you haven't felt that helpless feeling that a parent has when holding their child through some horror that they can't fix or ease away, you have no clue. And if you have, then you understand that your pain doesn't make someone else's any more or less painful. It is what it is for each person, personal and deep.
Balance your words on the scale of what you would want to hear or need to hear. Support and understanding is wonderful but don't try to compare or minimize. It's easy to offend someone with open wounds, so if you misstep don't take their hurt and anger as an attack but as a defense. You can make it better by listening, really listening, and then forming a response that shows you really understand their side if not their lives.
It is hard to watch someone you love hurt, struggle, and it is wonderful to see them overcome. The people doing the watching love to share the good but sometimes they need to let out the bad and need someone to hear them. It makes life better for them, it makes them stronger for their battles, and it shows them that someone cares.
I DO know the million comments that caregivers and parents of special children have to endure on almost a daily basis. I heard some of the most (well meaning) back handed compliments and down right insults for 21 years.
ReplyDeleteMy niece was born with many health issues.. I heard things like "It would have been better if she wasn't born at all." or "She isn't worth fixing" ( and that from a doctor). Family and friends struggled harder to find words and we learned to over look most comments concerning Mandy (my niece).
I thought that the day that she passed away (6 years ago this very week) that the comments would end, but they got more hurtful and more upsetting. At my niece's funeral I heard "She is better off now" and " She should have never lived at all because no one should have to suffer like this". (Mandy never walked or talked in her lifetime, yet she laughed, smiled and played in her own way.. she had no clue she was suffering, she knew she was loved and wanted though.) I heard comments that led me to tears or infuriated me. Yes, I understood that they didn't know what to say. Yes, I understand the meaning behind it was meant to be good and thoughtful. Yes, I understood that they didn't understand how life can be less than "perfect" and still be "perfect". So many times I felt like screaming "Just shut up!".
To all your readers out there that have friends who parent/love a special needs child. We aren't looking for the perfect words, advice from someone who has NO idea what it's like. We are looking for someone who will let us talk and listen and be a friend.. that's all. You are allowed to say NOTHING at all. Exercise that right. Think of your words carefully before half heartedly sending them out to a friend who is already tired and beaten down and at their own wits end.
Words have the ability to hurt more times than heal and saying nothing at all is sometimes the very best that you can offer your friend or family member. Trust that you don't really KNOW what you would do being in their shoes. Don't try to guess how they feel or how their child feels. Don't be arrogant enough to state what you would do for your own child. This profits nothing and as smart and wise and kind as you think it might sound.. You aren't helping at all. And comparing a child to a dog? OMG! Thank God I never heard that one or someone would have needed assistance walking away.
Practice your God given right to remain silent. And the parents/ caretakers of these special and loving children will deeply appreciate it. Trust me.
Bless you Tammy, You have beautiful babies that I adore and no one feels a 100% on top of their game all the time when dealing with the life they were given.. but I DO know that you are the best thing that ever happened to those babies. I adore you for your heart. I wish people had the sense to speak to you in the appropriate way.. to lift you up and to provide understanding on those "less than awesome" days.. but over-look them.. they just don't have a clue how one day those words, that are carelessly tossed around will make their way back home to them. If anything.. feel sorry for their ignorance. I know that I have for the last 26 years.
I love you, Stormy. I am sorry you knew such pain and carry it still. I am grateful for your deep understanding and that you took the time to share it with others. May you find comfort from pain, in memories of smiles.
ReplyDelete(((hugs)))
ReplyDeleteYes, Tammy I do know about the pain that you yourself is going through.. but I also know the unspeakable joy over the simplest things (the first time they hug back, the love that you feel from identifying a want or need that they couldn't communicate but somehow you just "knew" what to do!)...
ReplyDeleteSo many simple things that made the pain of careless comments and sleepless nights seem more than worth it all.
Every parent should know the happiness in the tiniest things (just once!) and not taking anything at all for granted. Enjoying every second because you don't know how many seconds are left.. The serenity in knowing that you made a difference in someone's life that you loved so completely..
when the days turn to years and the hugs are gone and the memories fill a place that once held an angel.. YOUR angel...
Though I am so sad for what I have lost.. I am far more happy for what I had.
Thanks for letting me share my most sacred memories with you. Most people dream of seeing an angel.. I actually got to hold one! ((hugs))