By Marisa Baese
Mommy to Anabel
HLHS (Hypoplastic Left Heart Syndrome), Down Syndrome T21
August – October 2018
We learned about Anabel’s severe heart defect and chromosome abnormality during the 20-week ultrasound. We were referred to specialists in St. Louis and saw them monthly until learning she would need to be born early at 34 weeks 5 days on August 15, 2018. Doctors were not sure how long we may have with her, but weighing only 4 lbs 2 oz, she was a fighter with a story to tell.
At the end of August, our team decided heart surgery would not be successful for her and we were crushed. She was still alive and living out her story, and we suddenly felt lost without a true path. A nurse at St. Louis Children’s mentioned On Angels’ Wings could come and take family pictures for us. While this initially felt weird and strange, we are so incredibly thankful for this offering. That photo session was Anabel’s one day she got to go outside, and we treasure the memories. We spent 48 days with Anabel in the NICU and since coming home with empty arms, OAW has been there to continue support in remembering her with us, loving our family, and extending grief recovery support to help with healing. We have not been alone in this journey because of OAW.
We were never sure what our future with Anabel looked like, and that roller coaster of hope changed daily for our 48 days with her.
No one expects to become a bereaved parent. We struggled with understanding what life with Anabel may look like with her severe heart defect and additional challenges due to Trisomy 21 (down syndrome). We were mindful of every step and medical intervention to ensure we were helping her and not hurting or prolonging an unfixable event.
We are six years out from our “season of Anabel.” Our family has struggled but also healed in many ways since 2018.
A big hope is that Anabel inspires people in many ways, from encouraging hope even when the light is dim to cheering parents on who are intimidated by the “what ifs” that accompany many diagnoses. Even with our sad ending, Anabel’s time with us was beautiful and her life was valuable and meaningful. How amazing that someone so small can have such an impact in just 48 days. One that lives on well past “her season.”
On Angels’ Wings means everything to us. They provided precious moments with our daughter captured forever. Snapshots of love that can never be revisited or recreated. The pictures were just the beginning of a lifelong relationship with OAW. That was our first connection to a support system of healing and growing and continuous love.
I would not be where I am today without OAW. I believe it’s totally valid for a bereaved parent to disappear into a sea of grief, consumed by the heartbreak. But, it doesn’t have to be that way. I am no longer [barely] surviving, but truly thriving. Carnivals and galas, grief recovery and anniversary momentos, they all play a part in the spiderweb of support, connecting and caring.
As time goes on, fewer people make note to reach out directly on important dates. Even though a bereaved parent continues on, that does not mean they’re doing well or that they even want to, sometimes. OAW understands and recognizes the struggles, validates the path of grief, and offers listening ears by from those who “get it.” They do not compare, they do not judge, they do not diminish, they do not rush, they do not move on. They stand by your side and walk with you, sit with you, stay with you.
If you are facing a potentially difficult situation during pregnancy or after birth, let OAW become your support people. While no one chooses these paths, you do not have to walk it alone. OAW is unique in that they will jump to your path. They will face the trouble WITH you. Love is evident in all that they do and offer, not unlike the love you have for your sweet baby. OAW will bear some of the weight and give you the breather you so desperately need.
