Back to reality

I thought I posted this last week but realized I didn’t. Someday I might lose my head if it were not attached!!

Five days with my BFF who has 2 kids with ARPKD and now back to real life. Even though it sucks having kids with ARPKD it is amazing having other moms who can totally get how I am feeling. And spending five days together without more than about 5 minutes of alone time was just what the doctor ordered!!  Not to mention the convention was so informative. And I even spoke at chapter training, which I am so proud of myself for. Julia and I spoke about conversations we have with pregnant moms who just learned about ARPKD and moms who have children who were just diagnosed and moms who had babies die from ARPKD. We talked to other chapter coordinators from around the country to help them understand ARPKD more and to make sure they refer these people to us to support. We had so much positive feedback from our talk and so many people want to learn more about ARPKD. I wish the doctors out there felt the same way. There is still so much misinformation out there.

Next year the convention is going to be in San Diego in August. Hopefully before that time I can meet up with my friends with kids with ARPKD for a girls’ weekend! We need to get together more than one time a year!