One of the things our family will forever be grateful for is the incredible care we received at Northwestern Memorial Hospital and Lurie Children’s Hospital of Chicago. They were wonderful to us while we were under their care, but even as we have transitioned into life at home, they have continued to be accessible and provide much needed support.
Lurie has a program called Heartlight specifically developed for parents who have lost a child. The Heartlight staff sends support resources, letters, poems and other materials to help grieving parents and families in the healing process. When the letters first started coming, I didn’t think anything of it. I honestly let them just pile up on the counter. Of course, I was “doing fine” if anyone asked.
Then one day, I decided to open one of the envelopes. I started reading the pages inside, and it was as if I had written the words myself – they expresses exactly what I had been feeling, the things I had been struggling with and the questions I had. Even through I was surrounded by the most loving and supportive family and friends I could ask for, it was the first time I felt like someone understood me.
This was my last moment “alone” with my baby girl before we unhooked her from the ventilator. Of all the pictures we had taken, this is the hardest one for me to look at. Because I still remember how helpless I felt in that moment. Our family had just left the room so Kade and I could say our final goodbyes to Emmy. Up to this point, I don’t think I fully realized what was happening. I laid my head against hers and let myself fully feel the pain of losing my baby girl. These are hard feelings to relive, but I am eternally grateful to have them captured. Because I never want to forget.
I want to share this piece in particular. During the past 10 weeks, it has become evident how difficult it is for our friends, extended family and coworkers to interact with us. The first conversations we had with people after Emmy’s death were often awkward and uncomfortable. At one point, one of our very close friends asked me… “Jen, how would you deal with it if the roles were reversed?” Three months ago I couldn’t have answered that question. So, even though I’ve never been in your shoes specifically – I can empathize. I know it must be difficult to look at me or my husband and know exactly what to say. And that’s ok. I hope this will help, not only for us – because there is a much bigger picture here. I hope this helps you interact with anyone in your life who has suffered a significant loss and is grieving in ways you dont’t understand. Because it is not about you “getting it” or explicitly understanding the pain – it’s about knowing how to be there for the person you love.
“How To Help Me In My Grief”
written by Marilyn Gryte
Speak to me of the obvious. I know that it’s painful to talk with me about my grief, but I feel less alone when I know others remember. Please, above all else, don’t avoid me. I need to know that you care. When you are silent about my grief, I feel more isolated and I’m tempted to believe you have forgotten. It’s okay to use the name of the one who has died and to speak of what has happened.
I need your warm caring more than ‘right words’. It’s awkward for me to hear you hunt for profound words. I’m hungry to hear, “I’ve been thinking of you.” “I’m here.” “You’re in my heart.” “I’ll call you again tomorrow (or in a few days or next week).” A note, a phone call, a hand on my shoulder or a hug helps. I find it hard to glibly answer the questions over and over, “How are you?” “I’m grieving-and that means I generally feel lousy. Be with me and tell me you care. It’s easier for me to hear you than to find a quick answer about me.
I know my sadness will last longer than either you or I want it to. I’m afraid you will tire of my grief and I’ll need to hide it from you. I’m afraid you’ll avoid me if I don’t pull it together soon – and then I’ll be even more alone. Let me know you’re with me for the long haul. It helps when others remember key dates – the birthdays, holidays, anniversary dates of the heart. I need a few people to still be there and remember next week, next month, next year – a few people who don’t expect me to be ‘over it’ soon.
Please let go of trying to fix my pain. I’m likely to be on overload with advice and suggestions. Be patient with me if I can’t concentrate enough to read the books you bring me. When others try to tell me why this tragedy happened, what I should do or what I should feel, I wonder if it isn’t their own sense of helplessness they are trying to quiet. Please ask me what I need. And if I don’t know, give me a hug and let it be okay. I know I’m not much fun right now. Somehow I need to hear both that I have a right to be sad, and that you believe I will gradually find my way through this painful time.
Share your stories and memories. One of the sweetest gifts I can imagine is stories about how the one I miss so much now also touched your life. Sweet moments, funny moments, stray memories are like a photograph I can add to my memory album. It’s never too soon or too late to share them with me. I welcome them and I thank you for them.
Offer to help with daily practical things. I know others want to be caring and helpful to me – and sometimes I’m frustrated in not knowing what I need or how to ask. Sometimes ordinary things are a huge help. Maybe you can offer to come eat with me or to go for a walk with me. Ask me if I want time to myself or company. Maybe it’s help with the paperwork or taxes, yard work, or someone to sit with at a public event that might help. And if I turn you down – whether it’s for help or for an outing – be bold enough to ask me again another time.
Please remember that we all grieve in our own way. I may be clumsy as I struggle to know how to grieve and heal. I may be self-absorbed at times, sometimes insensitive, other times overly sensitive. I may need to talk and talk, and say the story over and over to anyone caring enough to listen. Or I may have to need to be more private and quiet in my grief. I may worry you with how sad I look and how often I’m in tears – or I may worry you that my sadness doesn’t show much on the outside. Some of us are outgoing and share things easily and some of us are more reserved. The pain is there for all of us who grieve, even though we show it differently.
If you are worried about how I’m doing – it’s okay to talk to me directly. I know I may not be myself for a while. I may act in ways that aren’t familiar to you or to me. If you get worried about if I’m safe, if I’m doing things that make my healing harder, if you hear me making decisions that don’t sound very smart, love me enough to talk to me about it. I’ll do my best to listen and consider what you are saying, and I ask you to do your best to also consider if what I’m doing may be one of the many variations in healthy grieving – or not.
Mostly, thank you, for your love and support. I’m told the journey through grief is a long one. I may get scared or lost at times. With family and friends solidly there for me, I know I can inch my way through this tunnel. Keep me company in the dark times. Stay near until I can see the light again with my own eyes. Your love and caring means more than I can convey in words.
I truly hope this helps. And I hope that it is to no offense to all the incredible people who have been there for us through our loss. You have all been so good to us, and we wouldn’t be where we are today without you. But grief is hard. And so is loving someone who is grieving. I hope this helps to bridge that gap.