When strangers become family

I've mentioned NTSAD on a few of my blogs. NTSAD was the organization that I found while I was googling what the heck to do the night after we got Greyson's diagnosis. NTSAD is the National Tay-Sachs and Allied Diseases and was created in 1957 by a small group of parents who were dealing with these ultra rare diseases. In the 65 years since it's creation, it's grown in size, and now helps over 700 families according to their website. Their website has a timeline of Tay-Sachs and how the knowledge and awareness has grown. It says the first recorded case of Tay-Sachs was in 1881 by Warren Tay. How many children have been diagnosed with this awful disease since then? It's just crazy to think about.

Well, I am currently writing this blog from Denver Colorado to attend the 44th annual Family Conference! We attended the Family Conference last year but it was virtual. This is the first conference in 3 years that is in person and I cannot begin to tell you how amazing it has been to hug these people who I've talked with the past year over facebook, text, instagram, etc. It's so great to see the kids and have them see Greyson. I'm so thankful we are here.

We flew out of Appleton airport on 7/6 at 8:45am. We had to wake up early to finish packing and to make sure we had everything. Packing everything we need for Greyson was quite the task. Thankfully his hospice does a travel contract with a hospice in Denver and they provided us with oxygen condenser, nebulizer, food, diapers, wipes, syringes, food bags, etc- so we had to pack some things to make sure we'd be ok, his medications, his oxygen reducer box, some food and food bags, his suction machine, food pump- etc. It was still a lot, but much more manageable having the hospice team bring the bigger pieces of equipment. We loaded the car and headed to Appleton. We got our bags checked and headed to TSA screen. I had called TSA cares ahead of time and we had a wonderful TSA employee call me the day before we left and told us to ask for her. So we got up to the TSA area (no one else in line!) and she saw us and pulled us aside. She took care of us and made sure we didn't feel rushed at all while we had to repack his medical bag and our carry-ons. We got to our gate and didn't have to wait too long and got on the plane. Adam headed on first to load the car seat and I carried Greyson in the plane and got him situated. Grey handled the flight SO well. He was pretty much wide awake the entire time and just enjoyed the ride. We landed in Denver around 10:30am and the Denver airport was MASSIVE. It was so crowded. It was hot. It made zero sense as we tried to navigate how to get to baggage claim. We were on one end of the airport and had to go to the other. So we used 3 people movers to get to the main hub, then an elevator down to a tram to get to baggage claim, back to another elevator, then down to the END of baggage claim. It was SO much walking, Thank goodness Auntie Courtney got there before us and had our bags ready for us! We had a rental car so then Adam had to take a bus to the car rental place, get the car, drive back and pick us up. It was quite the adventure trying to get everything so we could head to the hotel.

We got to the hotel and checked in. The hotel was beautiful and we were so happy to be out of the plane/car and just settle in!

We all took a nap and once we woke up we headed up to the Family Lounge. The Family Lounge was in the Presidential Suite- and just a place for attendees to hang out in. A place to go have a snack and talk with other families. We were able to meet and see some of the people who have supported us this past year. We stayed and hung out until it was time for bed.

Thursday--> Day 1 of the conference

We began the day by heading down to the main level and registering for the conference. We all received t-shirts and our family had a little welcome bag. We had a new family orientation that just helped introduce us to anyone who was attending their first conference. We decided to head to the session since this was our first in person conference. It was so nice to be in a room with other people who were in the same boat as us. After we headed to the ballroom for lunch. It was so nice to have some of our meals all together. You could sit at a table with a new family every time and just get to know everyone there. It was so nice. We then had a parent peer group breakout session and Courtney went to the extended family breakout session. Adam and I sat in a large circle with other parents of children just like Greyson. Some of them have other diagnosis other than Tay-Sachs but they are similar. Some parents have their children, some have lost their children. We went around the circle sharing our stories, shedding tears, sharing laughs and memories. It was really nice to connect with other parents. After this it was time for dinner! We were pretty exhausted after dinner and spent a while talking at our table with other families!

Friday--> Day 2 of the conference

Friday was the research day. We were all really tired from travel and the day before so we ended up sleeping in. We let Grey kind of determine our plan for the day when he was ok to wake up. He didn't nap much Wednesday or Thursday so we wanted to make sure we gave him enough time to rest. We headed off to lunch to see everyone and get caught up with the day. Adam and I had a scheduled massage with one of the massage therapists that was attending the conference. She did a FAN-TASTIC job. It felt so amazing. While we got the massage, Auntie Courtney took Greyson up to Camp Snuggle for me. Camp Snuggle is run by nurses, parents, siblings, and people who know how to be around our kids. I knew he'd be safe, but it's really hard for me to leave him with anyone! Courtney offered to say up there with him to make sure he would be ok so I went along with it. By the time we finished our massage the next session had already begun and Courtney said they were all doing great. Greyson was being snuggled by this sweet girl named Sami who lost her brother to Tay-Sachs and just graduated from nursing school. We figured while he was safe and the session was already going on- so we headed off to a brewery that was done the road. We walked over and spent a little time just the two of us. Once we finished a beer we saw another Dad from the conference and he came over. We talked for an hour about everything. It was such a nice talk with him. We headed back to the hotel and went for our Family Photos! By the time we finished with those dinner had started so we headed down. We decided to wrap dinner up and take Grey to the pool. He was pretty tired but we wanted to take him down there. He fell asleep in the pool while floating- Robin (the massage therapist) even gave him a massage while he floated and it was so nice. He was so relaxed.

Saturday--> Day 3 of the conference

Saturday was a jammed packed day. We headed to breakfast early in the morning followed by a session about health management for our kids. Then lunch. Then the men's group and women's group. I headed off to meet with the other Mom's and we did this cute craft where you take two pieces of paper and drop paint on them. Then you smoosh them together to reveal a messy but beautiful piece of art. We all sat around the tables and shared a part of us outside being a Mom, wife, daughter, etc.. what makes US happy as individuals. After we finished we went to our art, folded the pages in 4 and wrote a word to describe how we felt about the other women in our group. We laid them out on a table and Becky read them all off. These were the words I picked for me.

After that amazing session we headed to dinner and spent the evening talking with other families. We went and spent time in the family lounge where Greyson got to snuggle with other Mama's. It was so amazing to see them snuggle our boy. They knew exactly how to hold him, how to position him, how to move him when he coughed. One of the guys even said how great is it that your kid is a rockstar? Everyone at the conference wanted to see Grey, to talk to him, to meet him. People would come right up to him and rub his arms or hold his hand. Unlike when we are in public when we get a lot of stares and questionable looks. Here, everyone GOT it. They understood it. It was so amazing and once he said that, it clicked. You're right! He is a rockstar here!

Sunday--> Day 4 of Conference

We had a farewell brunch and last morning with everyone. We got all of Greyson's crafts from camp snuggle.

We stayed an extra night so we had all of Sunday to explore Denver. We decided to go to Dinosaur Ridge! It's a massive fossil site, one of the top in the US. The first stegosaurus fossil was found here and they have preserved dinosaur tracks! We got a little lost on our way there but we found Red Rock Amphitheater. It was beautiful!

Monday we flew home but our flight didn't leave until 5:30 so we decided to take drive around Rocky Mountain Arsenal National Wildlife Refugee. It was a cute drive through this protected land with bison and lots of ground hogs.

Lots of pictures to look through :)

Grey had a rough time with the flight on the way home. His O2 kept dropping but I have a feeling it was the heat along with the altitude. We didn't have the shake vest or cough assist when we were there so he went 5 days without his treatments so I think the gunk jut built up. The conference was absolutely amazing but there is something so wonderful about being home too. This conference we took home so much information but more importantly- we took home family. People who understand exactly what we are going through and exactly how we feel. It was so nice to have that and have them surround us.

We've been home now for a few days and we are getting back into our routine. Greyson is still recovering from the travel. He's been really gunky the past few days. Adam had his clinicals today so I took over when I got home from work. We did his shake vest, cough assist, nebulizer, and suctioning. Tried to break up all that crud for him, After we finished his therapies we went and took a warm tub. That always seems to make me feel better so I figured we'd try it. We are now getting ready for bed and he sounds like he's clearing up. I think he just needed his routine back. I'm so thankful we were able to go to the conference and I'm so thankful to be home. It was such a wonderful experience!

xoxo,

Kim