Diagnosis Day... D-Day... 2 years later.

Well, I am officially done with my first half of my first semester back in school. I finished my two classes with A's and I am really proud of myself. I just completed my state certification for nursing assistant a few weeks ago. They break up the testing into two parts: one knowledge test (75 questions) and then a skills portion (where they test you on the skills you learned in the course to make sure you are doing them properly) and it feels really good to be done. I passed the knowledge exam with 90% and passed all 3 of my skills with 100%.

I was absolutely terrified to take the CNA class because of PTSD from Greyson's care. I was scared to be in a nursing home because they make most people uncomfortable. The first day there I was just ready to stay hidden and keep my head down for the next 5 weekends. I had clinical Saturday and Sundays 6:00am-2:30pm. Our first day our clinical instructor allowed us to just kind of get our "feet wet" and meet the residents and get comfortable with our facility. Once we began starting to complete our cares, I became comfortable. More comfortable than I thought I ever would be. It was nice to take care of others and I actually enjoyed my time at our facility. It was so wonderful to meet the residents and learn a little about their history and their lives before they came to the facility. I felt comfortable pretty quickly and I'm pretty proud of myself! I fell in love with my residents and I'm going to miss them now that we are done with the course.

I'm still working at the bank 20 hours a week but I'm looking at possibly working as a CNA a few hours a week or short weekends or something to gain some experience and learn more about different departments. I have a feeling I know where I want to work later on in my career, but doesn't hurt to try other locations. Considering I was pretty closed minded about a nursing home and ended up loving it more than I thought I would.

Other than classes- work has been going fine. I've been trying to focus on my physical health and my mental health more too. I made the New Years resolution to be more selfish this year in the senses of taking care of myself. I need to focus on self care and time to heal. Grief has a funny way of reminding you how broken your heart is when you least expect it. I have been handling life better, but it's been 6 months since Greyson left us. 6. Months. How? It feels like time has sped up and when I sat down to think about how long it's been since I've held my son, my heart shattered. How in the world has it been 6 months. I'm proud I'm still standing. I'm proud that I can make it some days without crying. I'm proud there are days I still cry and I'm allowing the tears to come without feeling "shame" or "apologetic" because before losing Grey- I always did. I hate crying in front of others because it makes them uncomfortable. Therapy has taught me a lot but one thing that sticks out is losing my son is traumatic, losing my son is unnatural, and losing my son is devastating. Crying is completely acceptable and sometimes it helps, so, I cry. I am still doing EDMR therapy and it's completely mindboggling. I honestly don't understand how it works but it allows your brain to move around to memories and brings things up that I never thought bothered me, but they clearly do.

This week while doing therapy, my mind traveled to the day we received Greyson's diagnosis. I don't know if it is because the anniversary of that day is coming up next week, or if it's just untreated trauma that I had suppressed. Either way, I could remember the details of that day. March 26, 2021. Technically March 25th, at 10pm, I got a notification on my phone. I was sitting in our living room, in our recliner, watching Friends while Adam was in the basement studying for school. Greyson was sleeping in his room and I had his video monitor right next to me on the arm on the chair. I saw the notification was from our UW Madison hospital app and my heart sank. My throat tightened. I was hoping it was results from a lab or something he had run while we were hospitalized there but deep down, I knew it was his genetic results. Nothing could have prepared me for the words "TAY-SACHS" mixed within the medical jargon. Hex-A enzyme, Infantile, positive TAY-SACHS. I quickly jumped to my internet and googled. I searched for a prognosis first. I knew whatever the symptoms were, we could handle it but what was the prognosis. "There is no cure, terminal in all cases, children often die between ages 3-5 years old". I remember the air leaving my lungs. My entire body gave out. I was frozen in the chair- sitting on the edge - pleading with google to be wrong. I went to another website. Terminal. I went to another - terminal. Terminal. My son was dying. MY son. Somehow I gathered up my muscles and headed to the basement. My eyes were blurry from the tears and I slowly walked down the steps to my seemingly unaware husband. He was focused on his class information.. and now I am going to be the one to tell him our son is dying. Our son was going to die before he ever had a chance to experience life. How do you tell your husband that your beautiful blue eyed boy is on borrowed time? What kind sick joke is this?

I remember trying to say it out loud but the words weren't there. My air was gone. I had no voice. I squeaked out Tay-Sachs.. and lost it. He looked at me and said "well? what does that mean?" and I handed him the google article. We hugged and cried. I remember distinctly saying "What are we going to do?" over and over. How do you survive this? We went up to our bedroom, which is next to Greyson's. He was sleeping sweetly, safe and sound, in his crib, in his house we bought for him. We laid in bed and sobbed together. Adam eventually drifted to sleep but I couldn't find sleep. I went into the guest bedroom to avoid waking Adam up and searched what to do. I think my search literally was "my son was diagnosed with Tay-Sachs, now what?" That lead me to NTSAD and I found their facebook page. I debated if I should post on it - I was worried about what kind of people would respond. Working at a bank, I see a TON of fraud and was super worried about putting out too much information. I posted a generic bit of information asking for the next steps.. part of me was in denial. They got the diagnosis wrong. There is no way this was our story. I think it was around 1am when I first posted and I got responses immediately.

The next day I called the geneticist to update the appointment and the office wasn't even aware of his diagnosis yet. Somehow the results were allowed to be posted on our app before the doctor even knew they were in. We made an appointment for early afternoon and headed over. We sat around a white circle table. I was holding Greyson tightly waiting them to admit the mistake in the results posted to our app. Grey was wearing his black and white buffalo plaid onesie and his brown carhartt hat. He rested his head on my shoulder as we heard "I am so sorry, your son does have infantile Tay-Sachs." I'm not sure what exactly followed after, but I remember our geneticist telling us he had never witnessed a case of infantile Tay-Sachs in his entire career. Lucky us. We get to be the first.

His genetic counselor sat with us and gave us a slim folder. The folder had his test results printed, some print outs on Tay-Sachs, and NTSAD's information. I was numb. I was offended- offended that this was my son's life in a folder. His future.. between two crappy pieces of thick paper. I was angry as hell. How is this his future.. how is this my motherhood experience? They were wrong. They were so incredibly wrong. There is no way I grew this baby, gave birth, and loved him as deeply as I do for this to be our story.

That day had been pushed to the back of my mind over the past few months. I've struggled with reliving Greyson's last day. Struggled with the decisions we made over his diagnosis. Struggled over knowing if we did enough. Did we fight hard enough? Did we advocate hard enough for him? Did we give him the BEST shot at the best life he could have? I know the answer is yes, deep down, I do.. but I always feel like we could have done more. We should have had the chance to see our baby walk for the first time. I should have been able to see my amazing husband throwing a ball outside to our baby boy. I don't know if I'll ever been in the acceptace" phase of grief, but I'm not feeling as angry as I was. Believe me, I'm still angry, but just a little less. For as brief as I was able to hold my son, I will forever be his mother, and nothing, not even fucking Tay-Sachs can take that away from me. My name is Kim, and I am the mother to Greyson Kent and I am so incredibly lucky I get to say that. I wish our story was different, I wish we were still at the beginning of his story, but I will continue to tell his life story. I will fight to help other families advocate, I will fight doctors to allow for expanded genetic testing.. even if they don't think its necessary. We didn't either before, but yeah, it is. It's important.

I am also taking some time to update the blog. I uploaded a bunch of photos and something happened with the site's storage and I lost all the work I had done. I ended up upgrading the site and created an easier way to find it. The link is now just greysonsbravestory.com. You don't need the wix part at all anymore. It will still be all here (Thanks to June Swanson!) and I am working on updating the other pages. If you have something you'd like to see, please let me know. It will take me some time between work/school to get it all updated, but I am going to try to keep posting, adding more videos, more photos, and other helpful resources.

Thank you for sticking by us, thank you for sharing our story, and thank you for supporting us.

xoxo,

Kim