NTSAD Family Conference 2023

Adam, his sister Courtney and I were lucky enough to be able to attend the NTSAD Family Conference again this year in Reston VA. Last year was in Denver and we were able to take Greyson with us. While we are so SO happy to be here and so excited about the hugs coming our way, there is a very palpable void without my baby boy here with us.

We decided to come to Virginia early, before the start of the conference, so we could spend some time exploring Washington DC. We flew in on Sunday May 28th. We landed, found Courtney, and took an Uber to our hotel. We were all pretty hungry and tired from traveling so we explored the Reston Town Center which was right outside our hotel. It is a beautiful little town center with shops, restaurants, and places to sit. It's absolutely beautiful.

Monday - we woke up early and took the metro down to Washington DC. We started at the Holocaust Museum. I went there once as a teenager with my parents, but Adam and Courtney had never been. The minute you enter the museum, it's so haunting. It's emotional and I had tears coming down my face more than once walking through the exhibits. It's one place that is really dark but it's such a major part of our history. It's difficult to imagine the treatment of other humans the way they were treated and how Hitler had so many followers. The museum engulfs you and there is just so much to witness.

It poured rain after we left and we got DRENCHED. We had lunch at a Falafel place near the Warf. Then we explored the Lincoln Memorial, Vietnam Memorial, World War 2 memorial, and Washington Monument. I love that these memorials are free to enter. We happened to be able to visit them on Memorial Day and when we arrived at the WW2 memorial, we were walking around and witnessed Taps being played. There were flowers and wreaths everywhere for Memorial Day and it was truly beautiful.

Tuesday - Before our trip, I reached out to the Wisconsin State Senator Tammy Baldwin to explain why we were traveling to DC and see if she could help us get in to some tours. She responded and helped us get a tour of the White House and Supreme Court. The White House was amazing to be in! I'm pretty sure we even saw President Biden's dog outside. His helicopter landed in the garden right near where we entered and we were able to walk in some of the rooms. The details of the decorating are so beautiful. The President's portraits are amazing to see in person as well. The Secret Service was really kind that did our security check ins and they made sure everyone was cleared before they were able to enter. The Supreme Court was stunning. In all white marble, everything was so clean and staggering. We were able to sit in during a lecture to learn how the Supreme Court choses their cases, how the cases are tried, and how the Justices work together for their verdict. They had a small little museum on the main floor and we took our time to learn more about the history of the Justices and the building itself. After we finished, we were right across from the Capital building and decided to walk in there and do a little self-guided tour. The Capital was beautiful as well. There were a lot of people and groups there for tours but everyone was very respectful and it was a wonderful day exploring the 3 branches of our government.

Wednesday- We had a tour of Arlington National Cemetery booked for the morning. We decided to head there early and try to beat the rush. It was very busy, but the tour was phenomenal. We learned so much of the history of Arlington and how it became in our Government's possession. This was my second time visiting here as well, and this time I appreciated it a lot more. I think being older and having more of an understanding of the magnitude and sacrifice that lies within it's acreage made a huge difference. We saw Ruth Bader Gingsburg's grave, JFK's (with his wife Jacqueline Kennedy and their two children who died in infancy), Thurgood Marshall (the first African-American Justice on the Supreme Court), the changing of the guards at the Tomb of the Unknown Soldier, Arlington House, Memorial Amphitheater, and so many things.

After Arlington was went over to the Smithsonian Museum of Natural History. It's so massive but there was so many people- lots of tours- and seemed without chaperones. The kids that were there were awful and running around like crazy. It got pretty overwhelming and by this time, we had walked 20k+steps each day and our feet were tired. We headed back to the hotel around dinner time and met up with families who were arriving for the conference.

The rest of the week (Thursday-Sunday) was the NTSAD Family conference. We met so many new families who we know only through social media, and reconnected with families from last year. We were definitely missing families who were unable to make it but hopefully we can all make next years conference.

This is Maddie - she is the sweetest girl. Last year she painted a bird house for Greyson so he wouldn't feel left out. This year Adam and I got some snuggles, kisses, and lots of "I love you"s.

The photo above is Cayden - my buddy man who has Sandhoff's disease. Maddie also has Sandhoff's. Both these kids are absolutely amazing.

Below is Maddie loving on Cayden -- myself, Courtney, Crystal (Cayden's mama), and Kaitlin -- then Lily (she has the juvenile form of Tay-Sachs) with Maddie. These two girls are bffs!

The second row is Henry - a sibling of Ava Rose who passed from infantile Tay-Sachs like Greyson. He was so smiley and I fell in love! -- Cayden and Tobin -- Camp Snuggle kiddos!

(Above is Becky Benson (Mom to Miss Elliott) and the Family Services Manager for NTSAD. She puts on the family conferences each year. Her and Court were rocking the Remembering Miss Elliott shirts from last years Day of Hope.)

This conference was painfully different than last year. I remember crying a few times last year in Denver, just scared of the future and scared of what was to come. Now this year, I cried pretty constantly. It was very apparent that we didn't have Greyson this year. The first time I heard someone turn their suction machine on, I felt pretty triggered. I felt the tears well up and tried to contain them from spilling out. The feeding pump noise when a feed was done left my heart broken. Things I never really contemplated about "missing", but man, I miss them, because they meant Greyson was still with us. Now, it's just another reminder of the painful silence in our lives. I missed having a child to care for and snuggle with. I missed others coming up to me to tell me how handsome Greyson is. I missed having a stroller to push around. I missed having the pressure of him on my arms while sitting in sessions. I missed having the chaotic scramble to have everything with us to make sure we were prepared. I really miss him and this week was absolutely draining.

(Below- this video is from the Holocaust museum)

(Below- this was in the White House)

A lot of people came up to us to give us (very needed) hugs and to talk about Greyson. They would tell us how thankful they were that we made it, despite our loss. The way I saw it is, the first conference without Grey was going to royally suck, regardless of WHEN it was. I have a feeling they will "suck" for awhile until the grief isn't so fresh. It will always be there because I will always love and miss him with my entire being, but eventually it won't hurt so deeply. I miss having my son physically here with me more than I could ever put into words. My arms feel empty. My soul, honestly, feels empty. I'm struggling without him and I know it but I'm not afraid to share that with others because I know I'm not alone in this grief. There are families who attend the conference who lost their child(ren) 5,10,20+ years ago. They are still standing. They are still moving. So I know I can, and I know I have their support through this. Greyson gave me a voice. He is my catalyst. He's the reason for so many wonderful things in my life, and I'm not going to let that go to waste either. I cried more in this past week than I have in a very long time, but I was also surrounded by love and people wanting to hear about him and talk about him with me. People said his name out loud every single day and even though his void was palpable, I knew that I wasn't in this alone.

After our very first conference, I posted this blog - https://www.greysonsbravestory.com/post/i-get-by-with-a-little-help-from-my-friends and the title still remains true today. I have made the most wonderful connections through NTSAD. I met a new family this year who is working through their son's foundation to educate the public and medical professionals on the importance of EXPANDED genetic testing for everyone, not just people in certain "heritage" or backgrounds. I know that when I have a chance to get Greyson's foundation up and running, that is going to be one side of the focus. It's SO important to know what you are a carrier of- because YOU are a carrier of something, every single person on this planet is a carrier or something. It may not be Tay-Sachs, but we are proof, rare happens. Rare is real, and it's so important to know before you start having children what you are looking at so you can make informed decisions on how to start your family. *side note- if you have questions about this at all, please reach out to me. I would be happy to share more or connect you to the right people. You can use the contact us page or email us directly at greysons.brave.story@gmail.com*

Next year's conference is April 2024 in Chicago and I am already counting down the days. It was the most draining week and while my heart is broken.. it's also full. We were able to see so many kiddos and adults who are living with these diseases and able to honor the ones we have lost. We are able to talk about our lives and we don't need to explain anything, we all get it. Everyone attending is there to support one another and that is truly a beautiful thing. You're never alone and the NTSAD family is always there to support one another. I just wish Greyson (and the others we lost too early) could be there physically too.

Now that we are home- we are getting back to "real life. Our summer courses start next week and I am not ready. I've really enjoyed having a little break from school and I've been trying to read some books for fun. My next class is Advanced Anatomy and Physiology and my professor already uploaded a lot of the course material, so of course, I'm going to get started early and start studying this week so it's not as overwhelming when the semester officially starts. I've needed this break though. I've been really drained - a tired that sleep doesn't fix- the past few weeks. I try to leave it at home when it comes to school and work but that also takes a toll. I'm still doing my therapy, typically once a week, and still doing EDMR for my PTSD. I also have been doing acupuncture almost weekly and that is something I really look forward to. I never thought I'd say that- but I had to take a break because their schedule filled up so quickly and I didn't book far enough in advance. I really miss it! My acupuncturist is Ellie and she is amazing. I've learned so much but she has helped me even more. I highly recommend it if you're able to look into it in your area. It's helped my stress/tension, anxiety, pain, I'm able to relax - which is something I really struggle with since Grey passed, she's even helped my hormone levels and my skin. I've been having some pretty bad back pain and she's really helped me open it up and allow more movement.

This week, my youngest niece E graduates from high school and her sister flys in from Finland tonight. I'm really excited for the two of them to both be here and to celebrate E's accomplishment!

I also need to fix the issues I've been having on this page with our family photos. Hopefully that can be done tonight or tomorrow before work starts back up. It's been taking me a lot longer than I thought but we will be busy with family too- so hopefully soon :)

I also worked on a presentation for my biochemistry class regarding Tay-Sachs. I think I'm going to tweak it and share it on here to help spread awareness and educate about what exactly Tay-Sachs is. If there is anything you have questions about, please let me know. I'd love to hear from you!

xoxo,

Kim