A Tale of Baby Loss

A Tale of Baby Loss

In 2008, my baby in utero was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Caleb had an open-heart surgery at four days old, spent two weeks in the hospital recovering, lived for five weeks at home, and then had an undetermined traumatic event the Sunday before he turned eight weeks old and passed away in my arms.

Woman snuggling and kissing baby

Kristine snuggles with her baby Caleb. Kristine shares, “Talking to other people who were further down their path of grief also gave me hope that my grief load would get lighter, that I could survive and eventually have a happy life again.”

You hear it a lot, but it really was true for me that the first year of grief was the hardest.  Every month represented a new milestone that Caleb would have been hitting if he were still with me. I kept saying to myself, “Caleb would be learning how to sit up this month.” Or I’d catch myself staring in resentment at the little babies born around the same time as Caleb and envying every little accomplishment they made. These “what if’s” were crippling. I tried going to a Helping Hands support group, but they were all sharing memories of their older children. For me, it just made my lack of memories that much harder to deal with.

Then I found two online support systems. First, I was literally kicked out of an HLHS parents’ forum and on the farewell email, they told me about an HLHS Angel Parents’ forum. Then my cousin mentioned a blog that was closed to the public and only invited mothers who had lost a child. Both of these support systems helped immensely.

They helped me know how to deal with grieving siblings, how to answer the innocent probing questions of strangers without falling to pieces, and they told me how to manage well-meaning comments from friends and family that unintentionally hurt more than they helped. Most of all, they showed me that everyone grieves differently and that there is no wrong way to grieve.

Where family and friends could only offer a listening ear, these angel parents could give helpful advice based on their own experiences, and they wouldn’t judge my feelings, which allowed me to vent openly. Sometimes grief isn’t pretty, and it was nice to have a safe place where I didn’t have to pretend that everything was okay. Talking to other people who were further down their path of grief also gave me hope that my grief load would get lighter, that I could survive and eventually have a happy life again.

One of the other Angel moms shared with me a story that really helped put hope and perspective on my grieving process. The speaker compares grief to a piano dropped on stage in the middle of a play. At first, the actors bump into it and get hurt every time they turn around.  The piano seems to consume the stage and disrupt everything. Eventually the actors remember the piano is there, and eventually they find ways to incorporate the piano into the play itself.

I am LDS and going to my church also comforted me and helped me heal. I have to admit that, at first, it was really hard to go to church. I remember sobbing through the whole service one Sunday. Hearing miraculous stories of people being healed was really hard for me, but I knew that ultimately I would gain peace and find the answers I was looking for if I kept going to church.

Everyone has different ways of honoring and remembering their lost loved one. For us, we have two annual traditions. Our first tradition was inspired by a dear family friend who offered to set up a memorial 5k run in Caleb’s honor. Raising money to help other HLHS families gave me something positive to look forward to on Caleb’s birthday. It also showed me that other people loved and cared about Caleb and still supported our family.

Our second tradition happens every Christmas when we hang up a special angel stocking for Caleb. Our family tries to fill up Caleb’s stocking with gifts of service for other people. I love that this tradition keeps Caleb a part of Christmas and also helps our family (especially me) find positive things to do for others.

I still have days where grief takes its hold and won’t let go. Back when we first lost Caleb, these low points seemed to happen often. If I tried to hard to push them away, it seemed like they just got worse. I think it’s important to recognize those feelings and give them a place in your life. Sometimes I wanted life to stand still while I processed everything. Other times, I wanted to move and get going, but didn’t know how to start.

For these days, I found a strategy from another Angel mom that helps me keep functioning and working through things. On hard days, I try and make sure that I do at least one thing physical, spiritual, social, and mental. It really helps me to have a checklist that is flexible while at the same time pushes me to “go through the motions.” Sometimes it feels like the “fake-it-until-you-make-it” strategy, so I want to make sure and add that I wholeheartedly believe that acknowledging your feelings is important, too. I guess for me, this strategy just makes sure that I don’t get stuck while I’m wallowing in my grief.

Blog Author: Kristine Stecker.

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