I get by with a little help from my friends

When Greyson was first diagnosed, our geneticist told us he had only ever seen tay-sachs in one other patient. That patient had late onset tay-sachs, not infantile like Greyson. He has never seen the infantile ever.. in his entire career. So to say it's rare, is an understatement. Well having a child with a rare genetic disorder also makes you feel so alone. Yes, Adam and I have each other of course, but where do you go? Where do you turn to when you have questions. And believe me.. we had/have a lot of questions.

My first assumption was that our medical professionals would have all the answers. While our medical team is absolutely amazing- especially Greyson's pediatrician- they don't have all the answers because this is so incredibly rare. Our family and friends are so supportive, but it's not the same. They don't have answers because they're learning just as we are.

I found out about Greyson's diagnosis from the online mobile app from the hospital. It was March 25th at about 10pm and I get an email notification that Greyson had a new test result posted. I should have known better and I should have waited to look - but I looked. In the middle of all this medical jargon was "Infantile Tay-Sachs" and I immediately opened a google page and got to work. Once I saw how awful tay-sachs is.. and the fact it was fatal.. I got up off the recliner and went to Adam who was studying in the basement. I lost it. I bawled and told him our son was dying. His life expectancy (per google) is 4 years old. I found out on a mobile app that our son had a terminal genetic disorder. That night Adam and I cried. I couldn't sleep and I gave up on trying to sleep and decided to look up as much information as I could. I went in our guest bedroom to let Adam get some sleep and I started with facebook and looking for support groups. I found this page called NTSAD support and I clicked to join. I didn't realize what NTSAD was or if they would be welcoming or helpful with our situation. It was the best decision I made that night. I could have saved myself all that damn googling :)

NTSAD is the National Tay-Sachs and Allied Diseases organization. This group of people know exactly what Adam and I are going through because they have been through it or are going through it too. After we spoke with our geneticist and we officially had our diagnosis, I posted to NTSAD asking for advice. Where do we start? What do we do? How do I keep going with my life while I'm dealing with this? Immediately we got comments, messages, and so many helping hands. These families are so incredibly warm, welcoming, and brave. They're honest and they are so willing to put themselves and their stories out there to help us. We also got really lucky with the timing of our diagnosis because they had their 43rd annual NTSAD family conference this past weekend, and it was virtual, so we were able to attend. I was a little hesitant at first to participate because we're new and still struggling to share our story. Adam nudged me and we attended as many sessions as we could- and I'm so incredibly thankful we did. The first one we did was a family session- for parents - and it was so helpful. I thought it was going to be a huge cry fest (probably led by me) but it wasn't. It was happy and light. Everyone shared their information with us and we have more things to start looking for and more programs to try and obtain for Grey. The rest of this weekend was filled with more sessions and we left the last session today feeling hopeful. I can't express enough how thankful we are for everyone in the NTSAD family. We feel like we have a support system (which we are leaning pretty hard on right now) and it feels amazing. If we have a question, we post on the facebook group and we get advice to help us make decisions. Someone in the group said that you are doing the best you can with what information you have today. You're doing the BEST you can with what you have. You can't keep looking back and saying 'well we should have, could have'. You are doing the best you can with what you can. This group of people have been giving us more information to make better decisions to help us with Greyson's story.

Despite this diagnosis.. I left this weekend feeling like a bunch of weight has been lifted. I'm ready to just focus on today- on what we have in front of us - and make as many memories with our little man as we can. I hope if anyone from NTSAD ever reads this- you know how much you impacted Adam and I this weekend. I apologize for crying (I know you don't mind but still hate crying in front of people) and I'm so lucky we found you. Thank you for sharing with us, thank you for taking us in, and thank you for supporting Adam, Greyson, and I.

Also included some pictures- Dada and Grey taking a nap after the conference today, our chilly walk, Grey's tiny superhero cape arrived, and Greyson tried peanut butter cups for the first time this weekend :)

xoxo,

Kim