Keep you safe

I remember taking this picture. I had him on my bare chest wrapped in heated blankets and my sweater to try and keep that warmth in. I had on my maternity sweatpants and fuzzy socks to try and keep myself warm. I'm usually a warm person, but after giving birth and pumping- I was ALWAYS cold! I was sleep deprived, trying to get my milk supply in, just exhausted... But so incredibly in love. It was probably around 7pm and I had been in the NICU for the majority of the day. I would typically head to the NICU at 7am when Adam would head off to work and stay as late as my body would let me. Spending every second I could soaking in my son. I wanted to learn from the nurses and be there as much as possible so Greyson would never feel alone. I only left the room to get water, use the bathroom, and once to snag a snack at the cafeteria that day.

I took this photo and was going to delete it. I didn't like how my face looked. No make up, bags under my eyes, the angle was odd on my nose. But then I looked at my peanut. He looked perfect. He fit so perfectly snuggled in with me. I kept the picture because I knew before long he wouldn't be so tiny anymore. Little did I know what was truly coming our way.

When you are a Mom.. your job is teach your children. Help them learn and understand life. Help them become functioning adults who are kind, courteous, selfless, strong, independent adults. Your job is also to protect them. I felt that need to protect Greyson from the very beginning, and I felt it fiercely. Our nurses in the NICU were all absolutely amazing, except one. We had a few "regular" nurses who often had Grey on their shifts, but one day we had a new nurse. She came during the afternoon shift change and she had a poor attitude from the get-go. She rubbed me the wrong way from the very beginning. It felt like she wanted to rush through everything and that she didn't want to be there. Maybe she was annoyed because I was there all day, I don't know. I remember I had just finished pumping and I was cleaning my parts in the sink in Greyson's room when she came in. She said that she was told to do an NG tube because Greyson was eating so wonderfully but it was tuckering him out too much. The NG tube would allow him to get his whole feed, even if he needed to stop and take a break.

She provided that information to me. She left the room and I continued washing my pump parts and preparing the labels for the milk. When she came back, she gave me ZERO warning and started placing the NG tube in Greyson's nose. He began crying and screaming. It was this guttural yell that I will forever be haunted by. Zero. Warning. I can tell you, I was absolutely traumatized by that experience. I remember bursting into tears demanding she stop. Back the hell away from my kid! She had the tube in place and said "it's not like it hurts them at all". Bitch, are you kidding me? Did you not just hear what I heard?! Thankfully my mom was in the room with me and witnessed my panic and helped calm me down. I remember my mom asking "Do you have children" and the nurse responded with "no, not yet." Yeah, we can tell.. It was awful. I felt like I didn't protect him from that experience and my heart hasn't fully recovered from that day.

It's been a year since we found out our son has Tay-Sachs disease today. 365 days, a trip around the sun, 8760 hours... knowing our son's life was going to change forever. That our lives were going to change forever. We had been waiting for the test results to come in from Milwaukee since the end of December and the rushed test from 3 weeks prior. We were supposed to hear back from the rushed test March 25th so I took that day off work to be prepared with whatever the result may have been but our geneticist called us early in the morning to let us know that they had not received them yet. It wasn't until around 10pm that the results populated on the app we have through the hospital. Greyson was sleeping peacefully up in his crib, Adam was downstairs studying for school, and I was sitting in our leather recliner watching Friends. I felt my phone vibrate alerting me to a new notification when I saw the MyChart logo. I remember RUSHING to open it and trying to use my thumb print as quickly as possible to open it. I saw the bold "new test result" on the home page and clicked it. It was really small font and like a typewriter font. I glazed over all the jargon and I saw "TAY-SACHS DISEASE" and my mind started searching. I don't remember reading about that one when I had googled Greyson's symptoms and what it could have been. I remember seeing it but I never clicked on that one. I opened the browser and began searching. I was looking for the prognosis. I didn't care if it meant we would need to do more therapies or work harder to give Greyson a "normal" life- that would be something we could work with. But what was the prognosis?!

"Babies born with Tay-Sachs develop as expected in the first 3 to 6 months of life. Then, within months to a few years, they lose the ability to see, hear, and move. By age 2, most start having seizures. Unfortunately, children with the condition usually do not live past 5 years of age."

I began frantically searching for other articles and other pages. Frantically searching for a different answer. That article HAD to be wrong. I learned more about the HexA enzyme and it's function, that Tay-Sachs isn't just carried Ashkenazi Jewish populations. I learned that first article was painfully consistent with every other article I found. Most of them said 5 years is generous. Greyson was almost 1.5 at the time we got the diagnosis. Just shy of his half birthday. So you're telling me my son's life could be potentially be half way over. I held it together and got up from the recliner. I stood in my living room for a minute to collect my breath and balance. I went down to the basement where my loving husband, Greyson's amazing Dad, sat studying for nursing school. He was focused on his laptop with his back to me and he turned around when he heard my footsteps. I remember telling him Greyson's test results came in and the color drained from Adam's face. I think he knew before the words left my mouth it wasn't going to be ok. I remember telling him it's Tay-Sachs disease and Greyson isn't going to survive this. I broke down the minute those words left my mouth.. I lost it. How are we going to do this? How are we going to survive this ourselves? What the hell is happening? How is this happening to our baby?

We hugged each other for awhile in our basement crying. We both sobbing into each others shoulders. I don't remember for how long but we slowly made our way up to our bedroom and just cried in bed. He had his arm around me and my head was on his shoulder. I kept saying "How is this real?" "How are we going to ever be ok?" I mean I'm still asking these questions a year later.

I left Adam in our bed that night. He finally gave into sleep but my mind wouldn't let me. I went into our guest bedroom and searched for answers. Searched for help. What do we do? Where do I start? Are there programs to help us? It was the beginning of a very long, extensive week. I took the week after we got the diagnosis off from work and we spent so much time on the phone and computer trying to get specialist, equipment going, therapies, and what state assistance or federal assistance could we get? One of the first things people told us to do was apply for SSI/disability for Greyson. I started by filing our the medical information they needed. It took me F O U R H O U R S! Four. Long. Hours. Then called and were denied within 3 minutes of the phonecall. I "made too much money" and we owned both of our cars so technically we could sell one for cash and that was an automatic decline. That was really discouraging. Then trying to get everything set up was a joke. We would call and they would be like "well what do you want?" I don't know.. what do you offer?! I had to learn patience and how to truly advocate for my son.

It's been a full year but I still have bad days and nights where I can't keep it together. I am still incredibly sad. I still cry probably every day or every other day. Even just a few tears, it's not always a full blown cry. Sometimes it takes all my strength to not just collapse. A year ago we sat at a round table with our geneticist and the genetic counselor as they explained to us about Tay-Sachs. They let us know about some of the clinical trials and that was our only real option at any sort of treatment. The clinical trials would require us to move to make it really feasible. They are invasive and in their very infancy stages so there's so guarantee that it would even work for Greyson. They then gave us a folder of information. We sat there for awhile talking about our options. I remember I was holding Greyson and his head was on my shoulder. He had already begun losing his muscle tone and it took a lot of work for him to hold it up. He was snoozing when we our geneticist came over and said "he's truly a handsome boy". I remember feeling the tears running down my face hoping it was just a bad nightmare.

These photos were taken that day.

My sweet baby boy who doesn't deserve this. My sweet boy who was so happy to just be. It's hard to look back and see everything he has lost over the past year. He's lost so much. He used to play with his toys and love reading books with me. He would always smile when Adam or I would get him out of his crib in the morning. We would come in and sing "good mooooorrrning!" and he would light up. He would splash in his tubby and loved jumping in his jump-a-roo. He was a really easy baby too. Easy going an didn't cry very often. He did whine but usually easy to figure out what he wanted to fix that.

He was such a happy boy.

I like to think he's still happy. He just can't show it like he used to. I hope he knows how loved he is. By Dada and Mama, but also so many others. Family, friends, and people we have never met.

One. Year.

It's so crazy how quickly that year went. Adam and I are so lucky for all the love and support we've received over this past year. Thank you for loving our son and sharing our story.

Xoxo,

Kim