Being able to come to group, eat some real food (hospital cafeteria food gets very old day in and day out!), and talk to other moms, to be reassured that my little girl would pull through, and would turn into a strong, healthy child, gave me the strength to be there for her, advocate for her, and make it through her NICU stay without breaking down.
Groups like these make a whole difference in a family going through this journey. It makes us feel we are not alone in this. That there are people that understand exactly how you feel without having to explain yourself or justify your feelings especially those of frustration, sadness and grief.
No one can prepare you to have to leave your newborn in the care of others and the on waves of emotions such circumstances bring with it. Although it is part of the everyday job of the staff, as a parent I was taking everything in at warp speed trying to navigate a whole new world of medical information. During our stay at University of Colorado hospital I was introduced to the Mom’s Support Group through our wonderful nurse who on most days seemed to be caring for me as much as she was caring for our son. 3 months of trips to the hospital each day was at times isolating and the support group was a day on the calendar to look forward to. I am so thankful for all those who cared for our family and who have taken the time and energy to make Love for Lily a thriving network of support. We are so happy to have welcomed our dear son home and do not take his good health (all 11lbs at 4 months/1 month adjusted) for granted.
If, as a culture, we don’t bear witness to grief, the burden of loss is placed entirely on the bereaved. While the rest of us avert out eyes and what for those in mourning to stop being sad, to let go, to move o, to cheer up. And if they don’t if they have loved too deeply if they do wake each morning thinking, I cannot continue to live, well, then we pathologize their pain; we call their suffering a disease. We do not help them: we tell them that they need to get help.
Sahra, you are always stretching your own direction into goodness, into bigness, kindness and emotional bravery. If I were Lily, I would have chosen you too.
I honor you both tonight in deep love and I bear witness to your bravery.
The most important thing that LFL provided me was a sense of community and hope. I found community because we would all go around and share our stories and suddenly I was no longer feeling isolated and alone. We could discuss things like PDA, ROP, and BPD (the NICU loves their acronyms) and it didn’t require a ton of explanation. And I didn’t have to appear strong and in control because these other moms around me were also experiencing sadness and uncertainty and we were forever bonded.
The Love for Lily NICU Group changed my NICU experience. I had horrible postpartum depression and the doctor’s were very concerned when I was discharge from the hospital without my girls. I was feeling very lost and scared, but Love for Lily’s persistence and loving support really helped me make time to join the group. The structured support truly helped me open up and work through what was happening. Love for Lily, helped me to process all of the feelings that only NICU mom’s have, especially the guilt. It was hard to wake up and face the struggle. I believe the safe space of the group and hearing the other mom’s facing the same issues made it easier for me to admit and process my feelings. I made very close friends through the group that I will stay in contact with forever. I was able to go home as a whole person again and was able to be there for my girls when they needed me most.
I love the Mom’s Group because I am able to relate to other women who are going through similar situations as me – such as having a premature baby, having other children at home, relationship challenges, hardships, gains, and learning how to deal with the emotional, physical and spiritual perspective of what is happening. It’s important to have this group because it allows for the opportunity to heal and prepare for the future, to give us the opportunity to keep moving forward even when it gets tough.
During our stay in the NICU, Love for Lily provided me the opportunity to talk about my experiences with others who “got it”, and feel supported and not judged. Since going home, the Love for Lily Lasting Love program has provided me with a community, a “tribe”. I have connected with incredible women who have lived through both the NICU experience as well as the experience of losing a child. Fortunately for them, mothers who have only experienced “normal” pregnancies and births have a completely different perspective on motherhood, and can’t begin to understand how their words and concerns can sometimes cut like a knife to those of us who have experienced trauma and anxiety and pain as we’ve had to watch our children fight for their lives and felt powerless to help them, and in some cases lose them. Being able to connect with women who share these experiences has made a huge impact in my life – I finally have women who I can talk and cry openly with about my experiences without fear of being judged or pitied or pushed away. I can be authentic, honest, and true to myself and my experiences.
After every Love for Lily mom’s group meeting, I felt as though an invisible, unspeakable weight had been lifted and I was ready and more equipped to be the wife and mother I was trying to be.