Yes, the holidays are hard but even more so in the NICU, post NICU, or in bereavement.
The holidays are hard. This used to be a blanket statement I subscribed to. Prior to being in the NICU with my wife and daughter, going home on hospice care, and becoming a bereaved parent, I might have previously believed it. These days, I have a different version of that statement I experience during holidays and share with others, going through the same or similar. The holidays in the NICU are hard, the holidays after going home from the NICU are difficult, the holidays on hospice care are bittersweet, and the holidays when your baby has left for Heaven can be downright painful. My name is David. I’m the father of three children. My angel baby, Penny, and sons Diego and Koa. I am a husband to my wife Rose and yes… I am a NICU and bereaved parent.
My family’s NICU stay started on October 31, 2019, and spanned almost three months. We had a handful of big NICU holidays (Halloween, Thanksgiving, New Year’s), and each stirred up similar emotions. What should have been, what could have been, what we knew we had lost, and who we knew may not be here with us for these holidays next year. My daughter Penny had an irreversible severe traumatic brain injury. It was clear from the very first few days in the NICU that we as a family would be together on borrowed time. Every moment was our first and every moment, in some cases, was our last. We celebrated every day, smiled together, danced together, played music, laughed, cried, and held our baby – endlessly staring into her beautiful eyes, trying to capture every second.
Yes, the holidays are hard but even more so in the NICU, post NICU, or in bereavement. Here are a few skills I learned that helped me during my family’s time in the NICU and journey afterwards:
1. Being okay with not being okay, and being okay with being okay. It’s hard to accept you’re not ok, and it’s also hard, in many situations, to allow yourself to smile. The holidays are no exception.
2. Dropping your usual holiday norms and expectations. There is no book to show a NICU or bereaved parent how to celebrate the holidays. You may not have a traditional holiday, but you will have your holiday. Special to your baby and family. A “new normal”.
3. Celebrate in whatever way feels right to your family. In the NICU, as a graduate, or in bereavement.
4. Give yourself and your partner grace. Grace to smile, grace to laugh, grace to cry, grace to hurt, and the grace express their needs, wants, and feelings surrounding the holidays.
5. Acknowledge the holiday, acknowledge your hurt/grief/sadness or happiness around the holiday, and don’t forget to give yourself permission. Permission to opt out, permission to celebrate, or permission to do what is right for you.
What I wanted for the holidays was the one thing I could not have. If I could not have my daughter safe and healthy, I did not want the holidays. With the help of my wife, our nurses, and child life specialists, we managed to pull off Santa photos, a beautiful Christmas onesie, and a family photo I cherish to this day. It’s complicated and in that moment I was happy. To be with my wife and daughter, together. Allowing myself the grace to be upset and to smile. Holidays in the NICU, after leaving the NICU, or in bereavement are hard. It’s okay to smile, and it’s okay to hurt. Give yourself the grace to be however you need to be.
David is a NICU and bereaved dad and a Fatherhood Support Specialist at Hand to Hold. In his role as a certified Peer Support Specialist, David hosts support groups for NICU dads, bereaved parents, and serves families in the NICU at Dell Children’s Medical Center in Austin, TX. David hopes to provide compassion, understanding, resources, and foster a safe space for dads to process their time in the NICU and at home. David also hopes to open the floor for bereaved fathers to talk about their grief and loss experiences. David appreciates the small things in life and is very happy to be able to serve along other NICU parents and staff at Hand to Hold.