What would it mean if Ben received a diagnosis? First, perhaps most important to me today since I am feeling overwhelmed, is help. Help at understanding it all. Help in pointing me in the right direction. Help in my weekly fights with insurance and Early Intervention. Second, a diagnosis would help me predict and prepare for the future? Is he at higher risk for certain illnesses or condition? What does Ben’s future look like? Third, is community. Is there someone else out there like him? Can we connect and share our struggles, hopes, fears? Fourth, giving back. Can Ben help someone else? Perhaps there is someone else facing these same questions with a younger child with a similar gene. We could reassure them that Ben is worth it all, is sweet, loving, and smart. I love this picture because he never stays still long enough for me to catch the highlights in his hair. He was distracted and my phone was handy. Is also shows the amazing job Dr. Cohen did with his surgery on Ben’s skull.
On a lighter note, I am psyched to be attending the Rady’s genomics conference in a week and a half . It’s great to get paid to learn about something you love! ❤️