Trying to Keep it Quiet

Stressful! Our child has a devastating disease that is changing his looks, and he doesn't know it. How do we keep it from him until we figure this out? How do we explain all the doctors visits and the obvious strain that we are going through? How do we explain why Mommy cries during Mass every Sunday or why she takes him to the "Healing Mass". (and then cries when the priest blesses him...)

How do we protect him from the possible teasing from classmates? Do we tell the school? We don't want his classmates to know... These are all the questions that we have grappled with since Hank's diagnosis.

Right after the initial diagnosis, we stopped by the church rectory and I had the priest bless Hank because he had an "illness". Father said he would put Hank on the prayer list and I thanked him profusely. Little did I know what that meant...the following Sunday while at Mass, during the prayers of the sick, the lecturer loudly announced Hank's name! Hank looked at me with big eyes..."Mom!! What the...? I'm not sick!!" Whoops! From there on out, the church has been quietly praying for Hank!

And so we have been tight lipped about our situation, keeping things quiet, with just a few friends knowing and a few family members. Jeff didn't want to tell anyone until we knew what we were dealing with. He didn't want to have a bunch of unanswered questions. He didn't even tell his own parents until Christmas! And I didn't want to tell any friends who had kids in the same school as Hank or any parents of kids the same age for fear they might talk about it in front of their own kids.

In the last month or so, we have slowly been telling more friends and family members. Hank's teacher has known for quite awhile since we were pulling Hank out of school for appointments and I would cry every time she asked about him...We had to tell her something! But I knew that we could trust her with this secret, and she has proven to be a tried and true friend to our family!

Now fast forward to today... We now feel like it's time to share this information with those who love us and to maybe help someone else with PRS along the way. We have gone to a new doctor who has given us not just a ray of hope, but a whole sunbeam! (will talk more about it in another post). This doctor explained to Hank what he had and what he was going to do about it. So now that Hank knows, we have a plan and we have HOPE, it's time to let others know. Stay tuned...