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  • Jolie Manza

A matter of the heart.. and how I came to know baby Rylee

It's a funny thing, matters of the heart... Sometimes they can be hard to explain.

Sometimes your heart gets woken up by someone or something.

Sometimes the only thing that makes sense is to get involved. Meet Rylee, and her warrior mama Amie, a mama and Bub duo that has taken up a large part of my heart over the past year, and below is a bit of the story about how we met and why I am driven to share their story with the world. I believe our ancestors had it right -> It takes a village to raise a child <- and so they did just that...

Coming together to create a network of wise and caring elders who would serve as pillars of strength, support, guidance, encouragement, acceptance and inspiration for not only the children but also for the mother. Especially the new mother. A woman who will face her most vulnerable moments in those early years, not only learning and navigating the needs of her new born but also the needs of her new self, as nothing is the same, and there needs to be space and time to learn about the relationships between both. For those that already know, you know, but for those that don’t… the best way to describe pregnancy is the ultimate surrender. A time where you have no ability to control the outcome of this magical creation process you are taking part in. In all previous creative endeavors, you could erase things, start again, make a change, sit back and think, but with this creation, the creation of life you are as vulnerable and out of control as you may ever be. Sure we like to think we can do things to make the experience more comfortable, easy, calm, and so we follow guidelines and suggestions of those that have walked before and sometimes it all works out, and other times it doesn’t. You constantly wonder if you are ‘doing enough’, ‘what happens if’.. ‘what would I do when’.., the mind races with potential outcomes for each and every action and step you take, as if you are living in an alternate universe, watching everyone live their lives with ease, and there you are cradling the essence of a miracle within you and nothing else seems to matter. Once this babe comes earth-side, the natural instinct of the mama is to close the gates. Retreat back into a space with the new Bub and observe, witness, feel, feed, nurture so on and so on and so on. What we are not ready for is pretty much anything else. Work, beauty, to do lists, timelines, stresses, pressure… but unfortunately we don’t get to shut our doors for too long. We are called out of our cave too soon, still raw and bruised to the bone, yet we put on the face we are meant to and try to live up to the expectation that we can do this all on our own, and that’s if you have a perfectly healthy baby… But what happens when you don’t. And you are thrown back into the mindset through pregnancy where you were always wondering ‘what if’. And then the ‘what if’ came true, and there you are faced with the extra task of caring for a Bub that needs more. More time, more care, more compassion, more attention, just more. No mama should ever have to face it alone. Complications will come into each new mamas world at some point or another and taking it head on, one step at a time is all we can do, but just because you carry it well doesn’t mean it isn’t heavy. My personal struggles with my pregnancy and birth came in crashing waves of what I can best describe as crippling anxiety. Thoughts that would have me alone on the floor doing my best to find the next breath to get me through it. Often feeling guilty that I was struggling so much because nothing was ‘wrong’. It's a confusing time, the time of postpartum anxiety and depression, one that we often face alone as we are too fearful to tell anyone or share with others because this is meant to be the happiest time in our lives, and the fear of judgement would often outweigh the need for help. Well on top of that I moved to a new country when my Bub was 3 months old during a global pandemic. The combination didn’t make for the smoothest transition and you could say sent my already existing anxiety through the roof. In the early months, without much of a support group or the basic familiarities around me, like many during this time, I turned to the virtual world for guidance, advice, connection, and was able to join some online mothers groups where I could ‘meet’ other new moms and make connections. Insert Amie and Rylee, one night as I was laying awake reading through some of the posts in the group, I came across Amie who so openly and candidly shared a bit about her and her baby girls story. Mama to a beautiful baby girl named Rylee, born just a few weeks before my Gia. Due to some complications Rylee was born with traumatic brain injury known as ‘HIE’ which is caused by a lack of Oxygen getting to the brain. This left Rylee in a very vulnerable position in those first few days as what came next was a series of seizures, up to 200 a day and a grim diagnosis that we as new mothers all fear.

What Amie and her partner endured in those first months of Rylees life mimics that of a warrior, as they were able to find a way to get Rylee in a position where she could literally fight for her life with the support and love that she had swarming around her.

Despite the doubt from the medical world that Rylee would get to a place where her brain would start to make connections and thrive, Amie and Logan didn’t give up and found ways to get their baby girl back in their arms at home where she belonged, reaching milestone after milestone. After months in the NICU and countless procedures they found that the KETO diet was going to help her reduce the seizures she was experiencing and sure enough it worked. Rylee was able to go home and is currently living seizure free for almost 6 months. But this road to recovery is long and with many obstacles as Rylees body has to make adjustments to these treatments so faces test after test, diagnosis after diagnosis, is in and out of hospital, clinics, therapies, and daily testing and she is not yet even one. It’s enough to stop you in your tracks, and for me watching the way this woman showed up for her baby girl, with a love so thick you could feel it pour out of every photo struck my heart in a certain kind of way. This little lady has known nothing but the most beautiful unconditional love from her parents and what has happened because of that is a baby girl who is making her mark in this world as loudly and beautifully as you can imagine. But as the great David Attenborough has said: A species can thrive only when everything else around it thrives too. How can any of us step back and not help when we see one of our fellow mamas need us, when their baby needs support, it is our calling to find a way to come together and do what we can so they can thrive. So we can build a world in which our babies know they are never alone, so they know that there is a village out there who will build a net no matter how far and wide we are spread. And so now Rylee's story has become a matter of my own heart. One that I will do what I can to give her everything she needs to grow, thrive, live and love. In my conversations with Amie, they have found a therapy center called NAPA which is a place Rylee can go to receive therapy and care that will equate to years in just a 3 week time frame, but this like many of the other things this family faces comes at a great expense. Logan is in the military and Amie has had to leave work to stay home with Rylee to make sure she gets the care she needs and so it goes without saying it's been an extra extra challenging year for this family. Baby girls first birthday is coming up and so I am starting a GOFUNDME campaign to help Rylees family raise enough money to get her to NAPA and support Amie in the process. Nope, I’ve never met this beautiful family in person, although I know that will change soon enough, and it might seem strange that an onlooker would be so motivated to help. But for me there is no other option. I’m invested 100%, and hope so much that this will strike a cord within you as well, and you could donate a bit to this family, to Rylee, as her first birthday approaches. Let's get Rylee to NAPA, and show her that she has a village of support from around the world. Sometimes the smallest actions can make the biggest impact. $10, an amount you would spend without second thought on a latte or sandwich could make a huge impact on this families journey!

Let’s create the web of love that each and every child deserves. Rylee is not the first child who needs this support and she won’t be the last but she is my source of daily inspiration and motivation, and without knowing it has helped me find the strength to get through my own struggles, as if Rylee can get up day after day and fight this fight I can too. You can learn more about this amazing family @_allthingsrylee



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