Welcome, welcome, welcome!!! Thank you, from the bottom of my heart, for checking out my site. This is my first blog post here! I’m beyond excited to introduce myself and my passions to the world, but heck, where do I start?! There’s so many topics! I’ve been keeping a list of ideas I want to write about for a while but I decided that I need to start at the beginning. How this came to be.
Somewhere In Between came to me over several months in the last year as I began to navigate the world of raising a medically complex child. I found there were things missing that I needed as mom and my family needed to stay strong. I also found that there was no one to talk to that had been “in it” and the hardest part was having one child, healthy and normal, but then a little baby with medical complexities that up-ended our world. I felt “in between” communities and even though I had friends to talk to, they didn’t know what it was like. My heart was in 2 worlds but I was grateful. Yet, I needed a space to reflect, share and grow with others going through the same trials. Due to HIPPA privacy laws, even Children’s Hospital Colorado didn’t have a lot to offer for those families facing what we were. Sure, there are cancer support groups, Down Syndrome groups, and a myriad of other congenital or acquired conditions that society rallies around. But what about those with no diagnosis? Or those that just have sick kids? Or those with multiple diagnosis that don’t fall into one bucket specifically? Where was that support group?
In 2019 through 2020, I was spending ample time at the hospital just like other families. As I’d walk down the halls, even with masks on, I’d be looking for a friendly face to make eye contact with. Someone whose look told me “I get you mama”. If I was going to be spending my time learning and researching my sons conditions, and if I was going to be spending time in the hospital for the foreseeable future, I needed more than a weekly therapy session. I needed to be with others who understood what I felt, what we I was facing and offer some words of wisdom on how to be there for myself and my family.
As I transitioned into this new role of being Bowen’s paid caregiver, I felt a lot of guilt. While I will share more about Bowen’s story in a later post, the fact is, he is neurologically and developmentally healthy and normal. His conditions are medical, so I have so many moments where I do just feel like I am raising 2 totally normal boys. He runs and plays with the kids in the neighborhood just like he should be. He tries to ride his bike and scooter and expresses frustration when he gets left behind by the big kids. But then my idyllic reality will come crashing down when he is outside playing and stops to vomit randomly. Or when he wakes up in the middle of the night crying with a 102 degree fever out of nowhere. Or when I have to suddenly leave work and race to daycare to place an NG tube or G tube he pulled out. In those moments, who could I turn to and share my fears with? Who understood the sheer exhaustion I felt from being on high alert all the time? Sure, I have my husband, who is wonderful and does so much for me and our family. But at the end of the day, he wasn’t in the emotions like I was, and if he was, he was experiencing it so differently, it was hard to share. It still is hard to share.
I felt so alone, and work wasn’t helping. When I was at work I couldn’t stop thinking about Bowen, and when I was at home, I couldn’t stop thinking about how much I had to do for work. Something had to give. Wasn’t there anyone who knew the struggles I was facing? I did my best to keep up at work, and at first, I felt like “super mom” being the one to juggle the appointments and work full time. But it slowly wore me down and 40 hours a week was harder and harder because of the time I was spending away from work and then playing catch up. I kept feeling like there was nothing in place to ease my burden. FMLA only offered job protection- it didn’t lessen the amount of work I had to do. It didn’t ease the metrics and standards I was being held to. It didn’t offer a safe place to break down, or take a step away. There were no job protections I could lean on, no reprieve for balancing a 40 hour a week job, on top of caregiving 40 hours a week, on top of being a wife and mother.
When I finally stopped to think about it, I calculated that I was working 178 hours a week. That’s 2 40-hour a week jobs and 98 hours as a mom. That number is based on a 2017 blog posted on mother.ly stating that being a working mom is equivalent to working 2.5 full time jobs! And once again, my mind and my heart came back to what I was missing- support, the feeling of being seen and heard, and a village that “gets it”.
So, after thoughts and prayers, “Somewhere In Between” was born. This is a space for working moms balancing needs of medically complex kids. In the absence of a village, I decided to create it. I hope I can provide a collection of resources I’ve gathered on my own journey, connection to those in the Colorado community experiencing the same things and a place to feel loved, seen and heard yourself.
Somewhere In Between 