I am posting this in response to Kristins video.

First I want to thank her for taking the time to deal with
such a sensitive subject. As most of you know I have traveled the not so nice journey of have a child
with PUV. And I say this because it isnt nice. Its a heart wrenching journey. I have been on this road for
32 years. Longer than most of you, with the last 10 being really good since Daniels transplant.
So I come here to this group to share with you his life so you can see your future. I posted a picture of
my son at 32 years old standing in the OR at Miami Childrens Hospital as an OR Nurse. An
accomplishment indeed for a PUV kid who frankly has been through quite a bit. I shared with you when
he got married. I shared with you when his wife had a baby as I was always afraid he wouldnt be able to
make a baby and I wanted to put to rest the fears I know you have as well. I shared with you when he
graduated from Nursing school and stood next to his own urologist in the OR assisting in a PUV valve
fulguration as the doctors OR nurse. These are all huge milestones for my son. His dreams realized. But
more importantly I knew they were important to you as well so you could see there is an awesome
future for those of you in the trenches.
I used the wording in my post indicative of it all turns out well in the end. However I didnt realize that
there are moms on the group who would take offense with that statement as this is not the outcome
they had. Their children passed away. These brave women have experienced our worst fears for our
children. As so I was lambasted for making that statement. I feel the way I was attacked by these 2
individuals was unnecessary. A simple reminder to me that not everyone has the same outcome would
have sufficed. But it didnt got that way. I was called heartless and selfish. Two words that are foreign
to me in how I live my life. So I contacted Kristin to let her know what had transpired. Kristin as all of
you know has also lost a child. She explained to me many things from a perspective of a mother in
mourning. In order to calm the situation she removed the post in its entirety. What I felt she should
have done was to remove the negative comments and caution both of these moms that this language
was not warranted here and I would have edited my post to remove that sentence. But the entire post
was removed. In doing so she took away my opportunity to share a beautiful moment in my sons life
and furthermore a beautiful moment in mine. As moms dont we deserve these beautiful moments to
share? God only knows they are few and far between in this life we have. I feel like Im censored. I feel
like I cannot say what I need to say and share what I need to share. This is not just for me. Its for all of
you as well. That I have to be careful what I write so that I dont offend anyone.
My heart goes out to these women who have lost a child. There can be nothing worse in life. I am
mindful of this. That possibility engulfed my thinking for many years as I am positive it has for all of you.
And in the same respect where we that are still living the day to day PUV life and all of its trials and
tribulations cannot relate to their experience they cannot relate to ours. Im not sure which one is
more trying on your soul. Do people discount that we are luckier that we get to live through it? Im not
so sure. Are we really alive? Because sometimes I felt like a shell of a person just walking around. We are
also damaged by this process. How easy does anyone think it is to live through this? To hold your child
down while people hurt him? To watch your child cry because they are in pain? To watch them feel like
they are not like the other kids? To wear a diaper until they are 12 years old? And try to keep their self
esteem still intact? To have to cath yourself when they know the other kids dont do this? As moms we

are constantly running interference for them. And lets not even forget for a minute the impact on our
families and our other kids as they are living it as well. My child and I have been through hell!
So when I post a story to show you it does end at some point and its removed because Im offending
someone and then a follow up that I wrote about being offended and hurt myself is removed then yes I
am being censored. This is not fair to me and certainly not to you. You need these stories. I need to tell
them.
I want to thank all the moms here that have had my back over the last few days. I have been flooded
with private messages in support. But this is not the group for me. I dont want this censorship and so I
will no longer be posting anything. This hurts my heart because I wont be able to help you. As helping
people has in some odd way turned this negative into a positive. I council many moms privately and
work with doctors and hospitals on a daily basis. This has given me a lot of purpose and joy. I may at
some point start a group of my own where I can go without fear of ridicule for being honest. Please feel
free to contact me privately with anything you need. You can email me at sherryharpster@gmail.com or
here on facebook under Sherry Harpster or by calling me at 305-457-3920 I am always available to you.
May God bless you and your children.