Every year, on March 18th, I intentionally take a moment to open up my sacred space a bit wider and share about the fatal condition my daughter had, Trisomy 18. March 18th is a day set aside for sharing about Trisomy 18 and raising awareness. It is Trisomy 18 Awareness Day.
Since my daughter’s birth, over seven years ago now, I’ve been a pretty open book about her / our story. As a result one of the most common questions I’m asked is from someone who’s friend / co-worker/ sister/ cousin just received the news that their child has a fatal condition or terminal illness.
When they learn that their friend’s child is dying, these women want to know: What can I do for my friend? How can I be there for her?
Even though I lived through this, at first I didn’t know how to answer these questions people would ask or how to advise them to help someone like me. But over the years I’ve done a lot of reflecting back on what people in my life did during that time that helped me, and I thought this might be the right time for me to write down and share some ideas based on my own experiences.
So if you’re here because someone you know has recently received the news that her child is going to die, I’m hoping these ideas will help you be a soft landing place, a safe place, and a source of a comfort, healing, and encouragement for this woman in your life.
Because truth is she needs you.
First, let me clarify and share a few things.
Maybe your friend is pregnant and just received the devastating news at one of her prenatal appointments. Maybe she received the news after her baby was born. Maybe she just learned her toddler has a terminal illness. When she receives the news is a minor detail, the news remains the same, her child is dying, and these ideas for how you can be a friend apply regardless of the “when.”
In my personal experience, doctors informed my husband and I that our newborn baby girl had a condition that was “incompatible with life” a week after she was born. Doctors told us she had a lethal condition called Trisomy 18, or Edward’s Syndrome. This meant that she had 3 copies of her 18th chromosome (3-18). (You can learn more about Trisomy 18 here.) There are varying types of this condition, but hers was considered “spontaneous” and “full.” This meant that it was not the result of anything my husband and I had or passed along to her nor was it as a result of anything we had done or not done, but it also meant that there was no life expectancy past 1 year for her. In fact, as we learned more, the fact that she had been born and lived to be a month old were nothing short of miracles as most mothers who have babies with Trisomy 18 miscarry or experience stillbirth.
My husband and I were brand new parents, healthy and young, that experienced a seemingly healthy pregnancy with a baby we expected to be healthy, and there we were unexpectedly learning that our baby was doing to die. There was no treatment. There was no cure. It was the first time in my life I had experienced a situation in which there is no possibility of hope for my child, and that wreaked havoc on me for a long, long time.
We were preparing for our daughter’s death and thinking of her memorial service, while she was still in our arms. Nothing felt more wrong in the world than this–grieving your child while she’s still alive in your arms.
Of course we were doing everything we could to be fully present in every moment and memorize every facial feature and sound and detail, and overflowed with love… But unexpectedly becoming the parent of a terminally ill child was heart breaking and scary and exhausting and confusing and such a paradoxical situation full of bittersweet moments and mixtures of laughter and tears and rejoicing and mourning.
There are no instruction books or easy answers on how to handle this type of news and this life that is suddenly and unexpectedly thrust upon you. And there’s none of that for the people around you either.
But I needed people. Even though I wanted to hide and retreat within and felt like no one could understand, I needed people.
God gives us each other to carry each other’s burdens, to speak love to us, to speak truth to us, to be His tangible arms of comfort in these times of heart break.
But here’s the thing, I think it’s fair to say, whether it’s ours or someone else’s, pain and grief cause most of us to want to hide and retreat. But truth is, we need each other.
And you probably know this if you’re the friend reading this, that she needs you, but maybe you’re unsure of how to be there for her, here are some ideas for you.
10 ways you can be a friend to someone who has a child with a fatal diagnosis:
1. Celebrate her child
First and foremost, don’t let the news overshadow the fact that she has a child! This child is precious and loved and worthy of celebration. Celebrate her child. Love her child. Celebrate with her. Love with her. Congratulations is okay! Even though the news is full of sorrow, her child is here and beautiful — and that’s worthy of a congratulations and in fact she probably longs for it! When she shares something about her child, a picture, a conversation, smile with her, laugh with her, rejoice with her. I would caution against congratulatory gifts that may be seen as insensitive. For instance, if she is pregnant and her baby has a fatal diagnosis, use discernment for gifts like clothing her child may never be able to wear, etc. If you read further, I offer some other ideas if gift-giving is something you feel led to do. Now if she has a baby who is a few weeks or months old and you would like to give her a baby blanket or stuffed animal or appropriate sized clothing, I’m sure that would be welcomed. Discretion and judgement and sensitivity are needed here.
2. Give her space and grace
There’s time for rejoicing, and there’s also time for mourning. This news and this unexpected trajectory of her life and her child’s life is shocking and heart breaking; she’s going to need time to process and grieve. Allow her this space. If you two normally went to coffee every day or week, but now cancels, or she called you a few times a week, but now she doesn’t, don’t take offense. If she needs time to be alone with her child or by herself, allow her this. More than likely, she’s going to become a crappy friend, not because your relationship isn’t important, but because she needs to be with her child and has a massive weight she is carrying. She’s going to be in a place where she can’t pour into you. In this season she needs you to pour into her. Give her grace in this.
3. Don’t disappear, show up
Yes she will need space at times, but don’t let this be your excuse to stop pursuing and investing in a relationship with her. Do not disappear from her life. Give her space yes, but still show up for her. It’s going to be a delicate dance with no clear black or white answer that you’re going to need to use your discernment for. It might be hard for you to be her friend, but what she’s going through is harder. It’s going to be painful, it’s going to be sad, it’s going to be uncomfortable, but don’t let this tempt you to turn your back to it, because when you turn your back to pain because it’s the easy thing to do, you’re turning your back to her. And she will feel that. She needs people who are willing to show up.
4. Presence and silence is better than absence or accidental insensitive comments
Sometimes, you might need to show up on her doorstep or invite her out of her home or the hospital (if it’s possible). Do what is least inconvenient for her depending on her situation and again practice discernment. But if you had a presence in her life before, continue to be present in her life now. Text her. Call her. (Go back to point 3 and give her grace if she doesn’t answer or respond). Sit with her on her couch or in the waiting room. You don’t need the right words or the answers. You don’t need to fix her. You don’t need to give her advice. Often when we don’t like the silence we feel the need to fill it, don’t feel forced to fill it, because often times when we do this words might come out that are meant to be helpful but are actually hurtful or insensitive. What she needs is someone who will share this space with her. And sometimes that means silence. And it might be awkward, but just being there will mean the world and even just making the effort will speak volumes to her.