My son Kyle was diagnosed at week 11 of my pregnancy with Trisomy 18, a fatal genetic disorder that would keep him from living outside of my body and would most likely take his life before he was big enough to be held. We were heartbroken after his diagnosis, and we knew that in order to survive this as a family, we had to attempt to create some happy memories amidst the sad ones. We chose to make our sweet baby Kyle an important part of our family, even when we knew we would lose him early on.
We had two young daughters, age 3 and age 6 at the time, and sometimes it was hard to know what to say to them about something so big. But I am so glad that we didn’t keep the truth from them. My girls knew exactly what was happening to their little brother, and they grew to love him deeply in the 220 days that I carried him in my womb.
Unfortunately, many families deal with the loss of pregnancies and infants, and it can be overwhelming for parents to know how to help their young children process the loss. For those of you who wonder how to help little ones handle the loss of a pregnancy or an infant– via miscarriage, stillbirth, or even after birth early on–maybe you will get a few ideas as I share our experience of helping our daughters love fully and with faith, while also preparing them to grieve fully and with faith.
We chose to be honest with them.
We chose to avoid words like “he will fall asleep” because that could cause major fears every time they fell asleep. Instead, we used the words, “Kyle is really sick,” and we used our religious beliefs to explain and to comfort them. They knew their little brother couldn’t live on earth the way God designed him. They knew that God was the only one who could “fix” him. They knew that, yes, Mommy and Daddy will be very sad when Kyle passes away, but we will also be happy knowing that he’s all better in heaven with Jesus.
We told them why Mommy cried a lot, why sometimes we got upset with them over things that did not used to bother us, and why their cards and sweet hugs and kisses didn’t always make us better–because our sad was really big, and only God could make it better. And He still is.
We chose to include them.
We took them to every doctor appointment, even though they’d ask every week, “Will the doctor be able to make him better this time?” They so desperately wanted something to fix him. But they knew that if he was healed, it would have to be a miracle from God.
We let them see every ultrasound with us. We were blessed to have an incredible doctor who let us do ultrasounds whenever we wanted. This allowed us to really get to know our little guy. We would tell the girls every week, “Kyle is still really sick, but look at him– he’s so happy. He doesn’t feel sick at all! God is helping him be happy. Look at him dancing around in there!” which, as far as we could tell from his medical data, was totally true.
They got a vote every time we made decisions about his name, his favorite color, and his favorite movie (that he watched via my phone through my belly button, of course).
We chose to let them interact with their brother.
We didn’t force interaction with him, but we always encouraged it. They felt him kick. They listened to his heartbeat during ultrasounds, and while they knew he wouldn’t hear much longer, they truly enjoyed every moment they had with him. They poked my belly button all the time “to make the baby laugh.” They put my iPhone up to my tummy while they were watching a video so “Baby Kyle can see it too. See? He likes Handy Manny. But we can’t turn on Tinkerbell. He wouldn’t like that one. It’s just for sisters, not brothers.”
We chose to create mementos and memories.
One of the best things we did–that really helped and is still helping all of us–was to build “Kyle Bears.” We headed to our local Build-a-Bear Workshop, armed with a recording of Kyle’s heartbeat which we had captured on my phone during one of our many ultrasounds.
The girls were thrilled to pick just the bear that they thought would make Kyle the most happy– the blue one, of course!
I remember my oldest saying, “These bears are so we don’t forget Baby Kyle. He’s going to heaven soon because he’s really sick. But God will make him better when he gets there. So we are making a bear for us, so we don’t ever forget what he sounds like, and a bear for him, so he won’t be scared in the hospital and when he has to go to heaven.”
We put his heartbeat on a little custom recording button that you can add to your bear. This gave the girls the chance to hear their brother’s heart “beep” as often as they wanted for ten glorious seconds.
This entire experience was therapeutic for all of us. It helped us as parents see how they were processing this big, dark, scary circumstance, and it helped them do something constructive for themselves and their brother. The day of Kyle’s funeral service, the girls took it upon themselves to make sure that the bear they had made for Kyle was lying on his grave before they left, keeping him from being scared. This gave them so much comfort to know that they were able to do something for their brother.
Even now, as he has been in heaven for several months, at random times throughout the days and weeks, someone always presses those buttons. We all stop what we’re doing to listen to his heartbeat, and we usually smile. Because while the entire ordeal was so terribly difficult, we were able to make some happy memories during it as well and come through it a stronger, closer family. Those happy memories with our daughters are what we desperately cling to in these times after his death.
QUESTION: How have you helped your children handle heart-wrenching circumstances?
CHALLENGE: If you are going through the experience of pregnancy or infant loss yourself, or if you know someone who is, think of a way you can create a happy family memory.
Edited by Rachel Nielson and Sarah Monson.
Feature Image from Shutterstock/Graphics by Julie Finlayson.
Other images provided by Kim Rackley.
Originally published on November 24, 2014.
I’m so so sorry for the loss of your sweet Kyle. I love how you talked with your girls and I love that Kyle bear.
melanie Lewis says
Did Build a bear have any sort of special ceremony etc for this event? My friend has recently lost her child and plans such an event. I want to know what I can do to help her. Sincerely
This is beautiful. Thank you.
I have a son with severe disabilities. He is the oldest of my six children and they all love him very much. According to the medical world, he should not still be here with us but should have only lived a few months. I am grateful for every day but we all know that his life expectancy will be shorter than we hope for. I love this idea of Kyle bear. It’s beautiful. We’ve talked with our children many time about heaven and resurrection but this is an added way to keep our children always close to each other, even when they may be gone. Thank you for sharing. This is so hard and you were so brave to share.
Beautiful article. We lost a baby boy to miscarriage last year, and have a four year old. The most comforting truth for him and my husband and I was that we knew Judah was living in heaven.