Leaf with a raindrop

June 11, 2009 at 10:47 pm 1 comment

I just spoke to a family whose baby died from ARPKD on April 10th.  (the same day Matt’s brother died). They told me that in the hospital there was a sign on their door with a leaf and a raindrop that meant they were a “special” family and that people shouldn’t run into the room yelling “congratulations”. I remember when Gabe was born and was transferred to the other hospital we would get these calls from people who immediately said “congrats”, but at the time we didn’t even know if Gabe was going to make it. That was so hard for us.  There should be an etiquette on how to talk to people in these situations.

I know I’ve said this before but I am grateful for the PKD Foundation and grateful I have this outlet. I do feel this is one of the reasons the boys have ARPKD so I could help other parents who have a child with ARPKD. Matt thinks I give too much of myself to these families but I know I need to do this. I need to do this on so many levels. One is to help me deal with the boys’ diagnosis and to feel there is a purpose to their disease. And mainly to help others deal with ARPKD; be it a pregnant mom who doesn’t know where to turn, a new mom whose baby was just diagnosed with ARPKD, a mom whose older child was just diagnosed with ARPKD, or a mom who has experienced a baby dying from ARPKD. I obviously know I cannot relate to all of these situations but I will most likely know someone to refer this family to. And even if it’s not me I know that eventually these moms will find a connection with at least one other mom who can totally understand them and their feelings surrounding their experiences with ARPKD. Just like I’ve found with my friend in that southern state. If my boys did not have ARPKD I would not know her and without her in my life my life would be different.


Entry filed under: Uncategorized.

Over rated sad

1 Comment Add your own

  • 1. kidneyeyemomma  |  June 13, 2009 at 11:24 pm

    I could not agree more.

    There is something about being able to help someone in a way that you were also helped that is rewarding – that’s how it has been for me. It’s rewarding to keep the circle going. There aren’t many people who can take call after call with people so desperate and in pain. I think that means that not only are we helping, but we are also getting a lot of out of it.


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