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. This 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.
5. Do not minimize her pain and never use the phrase “at least”
In attempts to fill silence when you don’t know what to say, you might try to say something helpful, but it’s going to be hurtful. Be careful. Best rule of thumb here is when you don’t know what to say, don’t say anything at all. Go back to point 4 and just be still with her. You might be tempted to say things like: “at least you’ve had this time with your child, at least you have a child, at least [fill in the blank].” Your heart might be trying to help her “look on the bright side” or help her give thanks for things to cheer her up, but really, it’s probably minimizing her pain and her situation.
6. Show simple acts of love
So don’t disappear, don’t fill the empty space with empty, minimizing, or potentially hurtful words, show up… But what else does this look like? It looks like simple acts of love. It looks like coming over and doing her dishes or cooking her a meal. It looks like bringing her flowers or a cup of coffee from her favorite coffee place. It looks like sending her a text with a simple “thinking of you today” or asking how she is doing. Maybe it’s offering to watch her other children if she has any so she can spend some one on one time with her sick child. Maybe it’s sending her a self-care basket. Think of the best way you might be able to show her a simple act of love and act on it.
7. Know where you are in her circle
Are you in her inner circle? Her best friend, her mom, her sister? Are you in her middle circle? Her friend from small group or church or co-worker friends? Are you in her outer circle? Are you her co-worker but you don’t have much of a relationship? Do you know her from the gym but are just really Facebook friends or acquaintances? Where you are in her circle determines the appropriate ways you respond and show up in her life. If you’re just acquaintances or don’t have a close relationship, you’re more than likely not going to be the person coming over and sitting on the couch with her, you might be the person who brings her a meal or reaches out with a kind comment on social media, and that’s okay and that’s good! If you’re in her inner circle, you might be the person she needs to go with her to a doctor’s appointment or to sit with her in the silence. Know where you are in her circle, and show up in ways that are appropriate.
8. Encourage her to lament and guide her to healing words
This is more for the inner circle friends. You know her best. You can speak most gently and sensitively to her heart. This sort of goes along with points 2 and 4. She doesn’t need you fixing her. She doesn’t need you rescuing her. What she needs is you pointing her to her Savior who is her Healer and Rescuer. But this does not look like quoting Bible verses to her that might make her feel judged for where she is in her faith. Chances are, even if she knows Jesus, she is wrestling with some big things. This is okay. Let her know this! But, again, depending on your relationship and using discernment, a Scripture verse in a text or card, might be appropriate and completely helpful. But for this point, know that her lamenting and grief is normal and healthy and let her know this too. Don’t make her fake fine with you. And if you know of a resource, a book, an article, etc. that you think would be helpful to her, that offers healing words, it’s okay to pass them gently along to her.
9. Help her remember
The fact is, her child is dying. One day will be her last day with him or her. And more than likely she’s spending every day holding on and tying to remember. Help her with this. Give her the gift of a photography session, either offering to do this yourself if you’re talented in this area or giving her a gift card for one. Give her a gift like a hand print kit or something that will create an item to cherish and remember her child. Give her a journal for her to write down important details, milestones, and memories.
10. Make an effort to learn about her child’s condition
Of course it will be natural to ask your friend questions and learn more about her world and what’s going on with her child so you can empathize and better be there for her and her family. But there will be times when she is so tired of sharing information and answering questions and there will be temptations for her to become so lost in sharing facts that they gloss over her need to be real with someone and go beyond the facts. As her friend, use discernment when asking her questions, ask them out of love and genuine desire to know more because you care, not in a probing or questioning manner. Most of all, do a little research on your own. Your effort in educating yourself and raising awareness in your own world will mean something to her and will give you a basis for understanding maybe more of how you can support her. It helps you enter this sacred space of hers that feels isolating.
11. Pray for her
Never underestimate the power of prayer. When you don’t know what to do, when you find yourself not even being able to do some of the above ideas, if you feel her closing herself off to you, pray for her. I cannot count the times that I could tangibly feel people’s prayers covering me and carrying me through my days. Here are some ideas for praying for her: Pray for the Lord’s will to be done in her and her child’s lives. Pray for Him to comfort her, guide her, give her peace, bring her joy, hear her cries, show her mercy and grace, give her wisdom for decision making, bring healing to her heart. Pray that God would lift her eyes and empower her through this journey. And of course we can always pray bold and big prayers of the impossible, prayers for miraculous healing for her child. Pray that God would show you how to show His love to her. You don’t need the perfect words, just pray God would be with her.
Knowing exactly how to respond in hard situations is just that–hard. It takes empathy and wisdom and discernment and genuine love. These ideas I shared above are just some of the ways people showed up for me that helped me when I walked this path, and I hope in sharing them they will help someone else walking the same path.
Lastly, when you know someone who has a dying child, you can expect God to be there in the heart break and pain and fears, you can expect God to meet your friend’s needs, and you can expect Him to show you how to be a friend to her. God is in the middle of everything, especially in our sufferings and heart break.
The LORD is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18
I would love to open up a dialogue of specific questions or other ideas you might have on this topic. If you want to do something for or say something to your friend but aren’t sure if it’s wise, I might not know your friend, but I would like to offer myself as a sounding board to help give you a little wisdom or discernment if I can. So please, if you have any questions, leave them in the comments or send me an email, and I would be happy to share more of my thoughts with you and pray for your friend and her child.
Also please check out my page on infant loss and grief for more resources that might be helpful. Specifically, the organization Be Not Afraid is a great resource to find other courageous stories of families who have received a fatal diagnosis for their child during pregnancy.
And lastly, I’ll be sharing more personal details and stories of my daughter Hailey on Trisomy 18 Awareness Day (March 18th) on my Instastories so feel free to follow along and learn more about our experience with Trisomy 18.