Yet Another

In the past 2 days I have heard from 2 families who have a child recently diagnosed with Sanfilippo.  I volunteered to speak with newly diagnosed families through the MPS Society, especially for those with multiple children affected.  I really love the opportunity.  I remember calling people in the days after we received Waverly's diagnosis.  It was such a horrible time.  I was desperate to speak with someone who understood.  I don't remember having any expectations in the conversations.  I just absorbed whatever I could from their experiences and found comfort in our similar stories.  Now I am on the other end of the phone.  The moms are just barely holding it together, weeping throughout the conversation, head swimming with so much information and so many questions.  I remember so clearly that feeling.  It is grief, not in the traditional sense, but we grieve all of our expectations, hopes and dreams.  I remember staring at Waverly and feeling like she was going to leave us at any moment.  It was hellish.

Many people told me "it will get better".  I understand where they are coming from, but it never gets better.  The sadness just deepens.  The tears flow more intermittently.  I am no longer consumed by Sanfilippo.  My emotions can feel as raw as they felt that day, especially when I hear the sobs of a mom desperate for a cure.

After each call, I hang up and cry.  I can close my eyes and remember those days so clearly.  I hate know that another mother is facing this nightmare tonight.