Before we get into the events that led to Hannah not being able to breathe on her own, let’s take a step back.

Before Hannah’s surgery, we spent about 2 weeks on the general floor of the children’s hospital after being transferred from the Neonatal Intensive Care Unit. For those who don’t know, there is a HUGE difference between the kind of care you get when you’re on the general floor compared to the NICU. I always described my initial experience as being thrown to the wolves. It’s not to say there aren’t efficient nurses on the floor, it’s just….different. Before this moment, I had never had the opportunity to change my daughter’s diaper, feed her, etc, it was all done for me. Truth be told, I didn’t really know Hannah. I always felt slightly embarrassed when asked personal questions about how I thought she was feeling because I had no clue. We didn’t have time to bond the way you initially hope to when your baby is born. For the first few months, it felt like we were both just trying to survive. I almost felt this sense of fear for loving her. I know, that sounds bizarre but let me explain. When your child’s life seems as unpredictable as Hannah’s did those first few months, you almost don’t want to become attached in case you have to let go.

If you missed the last few posts, Hannah was born with a limb difference. Initially, before her Vacterl diagnosis, we were so scared of what that meant when it came to raising her and creating a life that was accessible for her. So when we got her diagnosis, we felt unprepared and terrified. What is Vacterl Association anyway? Vacterl is an association of birth defects that affects multiple anatomical structures. It’s an acronym that stands for Vertebral Abnormalities, Anal Atresia, Cardiac Defects, Tracheal Esophageal Abnormalities, Renal Abnormalities, Limb abnormalities, and Single Umbilical Artery (rarediseases.org). It’s not to say that all kids with Vacterl were born with every single one of these abnormalities, but if they consist of at least 4 of them, they are considered to have Vacterl. From all moms with a medically complex child, please don’t try to label our children off of their physical and/or medical differences. You would be shocked to know the number of people that assume that Hannah is cognitively impaired somehow because of her condition. Don’t be those people.

Nonetheless, trying to visualize life with Vacterl was hard. It wasn’t until I found the Instagram page of Ashlyn Outlaw and her adorable son, who ironically also had been diagnosed with Vacterl, that my perspective changed. The reason I saw it as ironic, was because I couldn’t find a child with Hannah’s condition and also having a limb difference, not until I found Myles (Ashlyn’s son). That’s the thing, this association varies so much across the board there’s no telling what life looks like for some people. Seeing the way this mom was able to embrace her son’s unique growth truly inspired me to take the initiative to learn and embrace our journey with a whole new lens. I remember one-night diving deep into researching and finding platforms that highlight kids and adults with limb differences, adaptive tools for daily activities, and the list goes on and on. I was able to find organizations, such as The Lucky Fin Project, Reach Charity, and Camp No Limits that helped me find joy in one day being able to still have certain experiences with my daughter and see her difference as just that; a difference NOT a limitation.

See, that first month as we waited for this surgery date, I felt that it allowed time for me to prepare myself for life after discharge. Whatever lament I had for our situation had begun to vanish and I was so ready to accommodate our life to Hannah’s physical needs. We can actually do this I thought to myself. I just could’ve never prepared for how different those needs would look after July 4th.

It all changed this day. My perspective, our future, and my faith, all of it felt so pointless on this day. I had lucked out in finding someone who could closely relate to our situation, but who was I going to find encouragement from now that my child would become tracheostomy dependent also?