To narrate: to tell (a story) in detail. I still remember the moment so vividly. The firehose of medical terms and odds and unknowns had been going full blast and we could barely catch our breath. The doctor had just given us another round of information that we could barely comprehend about Teddy’s potential future. Jason looked up at me and said “Teddy will write his own story.” From that point forward, we have lived our lives with that motto in mind. Teddy gets to be exactly who he is meant to be and we provide him with the support and love needed to succeed. Teddy is writing his own story and we are tasked to be his narrators as he makes the world a brighter place.
For those who are new to our story, Teddy is truly a bright light in this world. On paper, he was born a 2lb 14oz preemie and has VaCTERL Association, Caudal Regression Syndrome, Hydrocephalus, Level 3 Non-verbal Autism, Global Developmental Delays, and Apraxia. He spent his first 6 months fighting for his life and the next 6.5 years fighting for his quality of life. He has had significant medical trauma and his late diagnosed hydrocephalus has led to some global damage to his brain. But in real life, Teddy is SO MUCH MORE than what his 1000+ page medical record shows. He has proven every prediction wrong. He has shown time and time again that he is in charge of his story, not the doctors, not the therapist, and not even us. He is ridiculously smart (a little too smart for his own good), insanely strong, hilarious, curious, sweet, loving, stubborn, beautiful, and has the absolute best smile and laugh you will ever hear. There is not a person who has crossed his path that did not want to be a part of his story.
It has taken me 7 years to write down Teddy’s story. While we have shared the shiny bits and pieces, the story in detail has always been something I placed in a box and tried my best to keep it tightly wrapped up with a bow in the corner. I have always felt that dwelling on the hard makes focusing on the easy even harder. Well, we know that isn’t how it works though. When we talk about the hard, the easy becomes that much brighter. So I hope to write about Teddy’s past and present, special needs parenting, medical diagnoses and treatments, the highs, and the lows. So essentially write about the amazing, the good, the bad, and the ugly. So as we embark on the next chapter of Teddy’s story, it felt like the right time to untie the bow and make all our futures a little brighter. I am NOT a writer and grammar has always been a weak point for me, as you will see, but I will do my best to tell our story, so please be kind. Most of these posts will be written from my point of view or our combined experiences, but Jason will also be writing some to give you a better perspective of how he experienced and perceived our story.
The timing of starting this blog is perfect in a way. It is the eve of Teddy’s birthday, which 7 yrs ago meant the start of one of the most emotional rollercoasters imaginable. While his difficult story started long before the week before his birth, the day I entered the hospital began the hardest and most beautiful 7 months of our lives. It is also starting at a time when Teddy has been approved for an exciting new treatment to heal damage to the brain and potentially give him an even brighter future. This treatment is new and very expensive. I will give specific details in the next post, but the more I read and the more I speak to them, the more I feel he deserves this opportunity if we can make it happen for him.
We have changed our minds multiple times about starting the GoFundMe that I will mention throughout this blog because asking others to help us fund an experimental procedure that we don’t know exactly what the results for Teddy will make us uncomfortable, but the more we realized that this could mean Teddy’s future might be even brighter the more we desperately want to try this for him. Please in no way feel that you have to donate. We are happy to have you all here who love and support Teddy in all the ways you have over the years. If you do have the means and feel moved to donate, we would be so humbly grateful.
Thank you all for being a part of Teddy’s story. We cannot express how much we have appreciated all the love, support, good vibes, and prayers. It has truly meant the world to us. I am so nervous about opening up our lives for the world to see, but if we get even a fraction of the love and support our friends and family have given us over the last 7 years, it will be worth sharing Teddy with the rest of the world. And let’s be real, the rest of the world deserves to have Teddy’s bright light shine on them too!
