Life as a Medically Complex “in-betweener” Mama

Life as a mom to not just one, but two medically complex children.... there really aren't suitable words for this journey. It's frustratingly familiar to some and something completely unimaginable to many lucky others.

Before having children, I lived a physically healthy life. Yeah I had fun but I didn't have any medical issues. You only ever see videos of happy healthy kids, with moms that make it look incredibly easy, or you see very very sick children in emergency situations with parents so full of patience, grace and love. They never show you the "in-betweeners" like myself. If you told me 4 years ago this is the life I'd be living now, I would've never believed you; why would I? But looking back now, it's a life I am very grateful for, it has become a part of who I am, and who I will always be. This life has changed and shaped me in so many ways.

To preserve the integrity and privacy of my sweet little cherubs (sometimes), their medical information isn't pertinent. But what I can say, I have spent more time in those white walls of countless hospitals in 3 different states and a combined 15 if not more different specialities. I have taught medical professionals things that I never should have had to know in the first place. I have been asked by many doctors if I studied medical practice and if not why I haven't. My answer to them is, "My only experience and knowledge is firsthand knowledge, something I didn't sign up for and never would have, I practice every day, I don't need or want a degree." The doctors and specialists that we've encountered in our journey for the vast majority of the time have been wonderful, but that is definitely not a blanket statement. We have certainly encountered a few twisted rods and bad eggs. Many of these people justify their poor attitudes and bedside manner with the idea that because they work with children they are inferior, this is far from the truth.

I consider myself an "in-betweener". My sons medical situations aren't a perfect health, but also arent a constant 911 SOS situation either. Because my children "look" okay, and let's be honest they look downright adorable, they are often overlooked by professionals and dimmed down until something drastic happens and then it's crunch time to find answers and solutions. Healthcare should be equal and accessible to all, parents shouldn't have to fight tooth and nail for months sometimes years to get help for their child or children.

This life has been absolutely terrifying at times, feeling like you're drowning just for someone to throw an anchor on you and make you sink even faster. Hearing big words full of medical mumbo jumbo about what is or could be wrong, all the different tests that need to be ran, specialists to see, imaging to be done, medicines to administer. Having sick plans and complex binders documenting your every move.... it gets extremely overwhelming at times. This life is also incredibly rewarding, humbling and empowering as well, and that's what pushes me forward. Knowing I am their voice and their fight gives me a purpose I never knew possible. The amount that I've been able to learn, though not always willfully, finding different ways to accommodate and help my children thrive. The friendships I've made along the way. It's all so worth it.

One of my best friends Nichole had really great feedback on her life as an in betweener, I'd be honored to share a part of a conversation we had.

All the time I get questions like, "If he is so sick why are you bringing him to Disney or anywhere for that matter" ….. my answer is always "Because one day he might be so sick he can’t ….. one day this might not be possible. None of us knows what the future will hold but I damn well know I will make sure my son has the best life when he IS in the position and feeling his best and able to do so ."

I found this to be an amazing and beautiful perspective that I couldn't have worded better if I tried. Aside from the fact, our children's complexities shouldn’t be equated to something restrictive…. If they are medically capable, they are humanely entitled. Inclusivity is beautiful and shouldn’t even have to be romanticized in the first place it should just be commonplace.

The world for "inbetweeners" like myself, and our children can be murky and hard to navigate; often painted in a very dim light and misrepresented. But what people don't see is the joy of the good days, the happy stims and noises; the tiny milestones that feel like mountainous achievements.

If you are an inbetweener, give yourself some grace, you're doing so much better than you know, and each day is a new chance to try again. If you love an inbetweener, show them the grace, the love, the acceptance, the safe space to talk and feel heard and validated, it means everything in a world where you are made to feel crazy.