**Disclaimer: Friends and Family, this post is meant to be a help to anyone who finds themselves on this journey with someone else. You have been the most supportive people we could ever hope to have had surround us at this time. You held us up and carried us through this. THANK YOU! I also wanted to document this stuff so if I personally find myself in this situation with someone else I can refer to it. I truly hope I never need it. – Kim
Anyone wondering what we talked about for around 2 hours to the Stephen Ministries group? 😀
I hope none of you are self conscious enough to be worried silly thinking you said or did anything that upset us during this whole journey. It takes quite a bit to rile me up. I could tell you horror stories like the one about the funeral home employee Doug talked to prior to Alex’s birth who referred to her as a fetus, didn’t seem to get why we would want a funeral, and tried to tell him all sorts of things about funeral laws that weren’t true. The man had a serious chip on his shoulder. We happily found another, very sympathetic funeral home to handle her arrangements. You can go back and read here about one instance where I was initially offended but ended up more sorry for the person I was talking to. Or I could tell you about another person, who upon learning our baby had a fatal condition, asked me if I planned to get my tubes tied this time. I brushed it off – she didn’t know what she was talking about. She doesn’t have any children of her own. How could I adequately explain that each and every one of my children was worth any and all pain I may have felt physically and emotionally and I would suffer anything for the joy they have all brought me. How incredibly grateful I am for each and every child I have been entrusted with here or in heaven. Our experiences have, if anything, made me want more children.
It takes quite a bit to rile me up.
I was talking to a friend who herself has lost two babies. We were talking about things people say when you suffer a loss. There are lists all over the internet of what to say and what not to say. I think it really depends on the person though what words are helpful and which ones aren’t. One of the things parents complain about most when they find out their child has Down Syndrome is the people who say how sorry they are. I was one of the few I guess that actually liked it when people said that when Aden was born. I never took it as “I’m sorry your child was born.” I took it as “I’m so sorry things aren’t how you thought they would be.” An acknowledgement that something happened we didn’t expect. That it was ok to be upset.
Some highlights of our “things not to say” list.. some may surprise you:
God doesn’t give you more than you can handle. I’ll tell you, in the midst of the storm the last thing you want to hear is God thinks you can handle this so he gave you something REALLY hard to deal with. And if you’re not handling it well, then you are not living up to God’s expectations.
God chose you for this. Are we that special? It’s like saying we’ve been chosen to be struck by lightening. YEA ME! Why us and not someone else? Because what does that say about the person telling me that – that they’re not chosen or special? or that they couldn’t handle what we’re going through? That’s why we like the “God doesn’t give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength.” quote.
You are such strong people. It may seem like that but we don’t feel that way. We’re scared, angry, tired, and full of anything but strength inside. There is no way around this. No way over it. We have to go straight through it and hang on tight.
How are you? This might seem strange because “How are you?” is such a general question that everyone asks everyone else. But the social construct is you answer with the generic “fine”. Well, everything’s not fine. And do you really want to hear everything that’s going on or are you looking to hear the acceptable protocol “fine”? And if it’s someone we don’t know very well, do they know what’s happening or do they not have a clue? Are they going to be caught off guard if we say things really suck right now?
(If you said one or all of these things to us, first, the sentiment behind it meant a lot and was appreciated and, second, we haven’t a clue specifically who said these things to us so no worries. Grief apparently makes you hugely forgetful. Hopefully the following suggestions will help you help someone in the future.)
One thing we both agreed on was it was (generally) better to say something than nothing at all. The silence is deafening and makes you wonder if the person cares at all. It can make you question your relationship with that person. I think a lot of people assume that bringing it up will cause you pain or make you uncomfortable. I can tell you from experience you’re not bringing up something that I’m not already thinking about. I thought about Alex every moment of every day. She is still never far from my thoughts. One of the best things anyone did for me was our neighbor who parked herself at my dining room table one day before Alex was born and basically said “How are you really doing?”
If you’re having trouble thinking of something, you can’t screw up with “I just wanted you to know we’re praying for you.” or the arm around the shoulder and the “We’re thinking of you.” Or anything that conveys “Your daughter is beautiful and has value and we will never forget her.” Or no words, just a hug. If you really want to be helpful, be specific about that help. “Is there anything I can do?” will most likely be met with “That’s ok..” But if you say “I’d really like to help. I want to do ___ for you (bring a meal, watch the kids, help you clean, do laundry, etc). When would be a good time?” One thing my friend said to me was “When you’re ready to get out of the house, I want you to come over and the kids can play and we can chat.” She then paused. “Do you need me to be pushy about it?” Yeah.. yeah I did. I needed her to bug me about it and reach out to me. Pull me out of my secluded comfort and rejoin the rest of the world. And know that she meant it and hadn’t forgotten about me.
So all the above plus the million or so obligatory stories about our beautiful, wonderful, fighter of a daughter and you have the synopsis of what we said at our Stephen Ministries meeting.
