I'm sorry... what?

Hang in with me. This is going to be a little long.

Where do I even start for this first post? Well, by now, I'm sure you've figured out that I (Kim) created this blog as a way for me to have an outlet, vent, share, save memories, and just have one general page that I can post to. Life has been difficult the past few months but the last few weeks has been almost unbearable. I wanted a place to keep track of everything we are doing and going through. For us, and for future families who receive the same diagnosis as us.

Well, I guess we start at our beginning. Everything started in 2010. I met Adam (the handsome man below) through a mutual friend. We started dating and immediately hit it off. I knew pretty early on that he was the love of my life and that he was "the one". We lived in Michigan and eventually moved to Wisconsin in 2014. In 2018 we finally got married and started the process of starting our family. I have PCOS (Polycystic ovary syndrome) and I do not have a regular cycle. We tried for 8 months to get pregnant on our own but despite testing every day, twice a day, I never had a positive ovulation test. I was growing frustrated and met with a PCOS specialist in our local area to help me. I began medication to start my cycle, and on April 15, 2019, PREGNANT flashed on my test. My due date was Christmas Eve 2019. I was so incredibly excited. Overall, I had a very normal pregnancy. I never had any morning sickness and only really had food aversion to avocados. My feet got swollen pretty quickly, but I felt pretty great the entire time. The only event(s) I had was three "big bleeds" with what they thought was a subchorionic hemorrhage. I thought I miscarried each bleed, but Greyson was absolutely fine. At 33 weeks, Greyson decided he was ready to meet us face to face. He didn't want to wait and share his birthday with Christmas! He came early, but he was so strong. He was only in the NICU for 12 days. The NICU nurses were constantly telling us what a rockstar he was.

Our rockstar hit every milestone until his 1 year - the crawling/walking phase. In November 2020 we noticed he was more lethargic than normal and had lost interest in a lot of things he previously enjoyed. He had started saying "Momma" and "Dada" but stopped. He used to make raspberry noises and that stopped. He used to help me turn pages in his books and stopped. It was just little things that we didn't really realize he had stopped until we met with our pediatrician. We shared our concerns with her and ended up taking him to the ER. She was afraid he had extra pressure or fluid on his brain - so we got a CT scan. The CT scan showed his brain was ok but they shared he did have the absence of the septum pellucidum. The septum pellucidum is a thin, triangular, vertical double membrane separating the anterior horns of the left and right lateral ventricles of the brain. This diagnosis started us down the rabbit hole because the absence of the septum pellucidum is typically a secondary diagnosis caused by something else. We were a medical mystery because typically the primary cause presents as blindess.. but Greyson is not blind. We ended up at Children's Hospital in Milwaukee and meeting with pediatric neurology. He ordered an MRI and EEG reading to be done the following month. Then those were completed and we met with genetics. They did not have any definitive answers so we had all 3 of our genomes run. While we were waiting for the results, Greyson continue to regress. He was having difficulty eating and he was losing weight. In this time he was meeting with a speech therapist and physical therapist each week. Our pediatrician referred us to University of Wisconsin Madison Children's hospital for "failure to thrive" and we were admitted there for a week in March. While we were there, we met with PT, SLP, OT, Genetics, GI/Nutrition, and a plethora of doctors. The genetics doctor met with us and went over some possibilities and he was the first doctor to prepare us for the severity of what we could be looking at.

Two weeks later, March 26, 2021 we met with the geneticist and heard the words "I'm sorry, your son has tay-sachs"... I'm sorry.. what? What the hell was tay-sachs? What does that mean for his future? What does that mean for our family? What is happening? As he was explaining to us what this meant for Greyson, our hearts shattered. Tay-sachs is a genetic disorder that destroys the nerve cells in our son's brain and spinal cord. Our son will never take his first steps or crawl. He will never say another word. He will never have "a first day" at school, I won't have a mother/son dance at his wedding, and we won't be able to watch him graduate or grow up. Tay-sachs has no cure, no treatment, and it's fatal. The average life expectancy is 4 years old. It's an awful.. deteriorating disorder. To say Adam and I are devastated is an understatement. We are angry. We are broken. We are terrified. We are so incredibly sad. How do you process news like this? How do you keep going?

People keep telling us how strong we are. How great we've been handling this. The thing is though.. that's the only option we have. We HAVE to be strong. We HAVE to keep going because we have our son for a limited time. Our time with him is even more precious and even more rare. This is the time we need to enjoy every single minute, we need to live our lives with him so we can make memories.

I'm hoping this blog will help me to process everything but also share information and memories with our family and friends. I can't promise every post will be positive and upbeat, but I can promise to keep this updated as things go on. I want to start educating families on tay-sachs.. and also share photos and videos of our sweet boy. I owe it to him to be the best Mom I can be, and I owe it to Adam to be the best wife and support I can be for him too. So for now-- here are some pictures of my handsome boys:)

xoxo,

Kim