Wednesday, October 16, 2013

Five Years...

There are a few moments in your life where everything stands still...where you feel the floor drop out from under you...where you know that life will irrevocably never be the same. Sometimes these are wonderful events...finding out you are going to be a mother or father for the first time...your wedding day...the birth of a child... I remember those good times with acute clarity...but those moments of utter sorrow resonant loudly with me.

There are a few catastrophic events that have taken place in my married life...things that brought me to my knees...and the memory of each one leaves me with a heartache I never imagined. Driving 90 miles to the hospital after my father suffered a heart attack and the phone call from my husband telling me, "I asked him to wait for you"...that exact moment that I knew that my Dad was going to die and I might not be there to say goodbye...The moment I realized in utter and complete fear, that I was miscarrying our fourth child...and the phone call from the doctor telling me that our sweet, handsome little 7 year old boy had a rare, incurable, progressive disease that would disfigure his face and cause his brain to atrophy.

It's been five years to the day, that we got the devastating diagnosis of Parry Romberg Syndrome...and today I am taking it hard! That phone call changed our lives...and I now think of life as "Before PRS" and "After PRS". At that moment our priorities changed...the way we look at life changed...for as many people who rallied around us...just as many abandoned us... And nothing mattered to us except finding a way to help our boy!

So here it is 5 years later...and I never thought we would be where we are now...that Hank would be 12 and living life to the fullest. In these last five years, we have had 24 fundraisers...Hank has met six other people with PRS...(which is just amazing!) We have traveled to NYC four times and once to Madison, Wisconsin for treatment...Hank has endured 4 surgeries...We've reached 30,200 people through this blog and many more through Hank's web site... we have been embraced by the Elk Grove/Sacramento community and blessed in more ways we thought possible.

I have connected with multitudes of other parents of PRS kids and adults who suffer with the disease. I have learned so much and I have been able to guide others through the terror of this diagnosis. Hank has helped other kids through the surgeries and continues to cheer on those who are walking in his steps. I count quite a few of those mothers as my best friends...even though I have only met a few in "real" life! With all the bad...comes so much good!

Hank is in 7th grade now....7th grade! How is that possible? No longer little and puny...I swear I can see him growing! Not as tall as me...but in a year, I have the feeling I may be looking UP at him! I worry about Hank...I worry about his health...his happiness... Hank is resilient and strong...this last school year was probably one of the best of the past five years. To me, 6th grade was was fun and challenging. He excelled in his classes...had fun playing in the school band, taught by a teacher he truly loves (and who loves him right back)...getting up every day...excited and ready to go. I was amazed! He even went away for the annual spiritual retreat...five days without mom or dad...I never thought we would get to a point where we would be OK with letting him out of our sight for that long...but with open hearts and trust in God, we did...and he had the best time! He came back more secure in who he is...knowing he can do things on his own...breaking away from us was great for him...and me!

Now our family is on another adventure...we've moved! Not across town...across the state! 350 miles away...back to our hometown...from a city of 180,000 to one with just 45,000 people. Very excited about being "home"...the place where all three kids were born...the place where I was born...deep roots and a beautiful place. They are in a new that they love...and the school loves them right back! It is a wonderful blessing to be surrounded by loving teachers and administrators who care about the "whole" child!

Hank's journey with PRS is far from over. We realize that the surgery last October did not do what it was supposed to do...and another surgery is looming...but we take each day as the gift it is and are so thankful that right now he is enjoying good health and loving life!

After 7 years of being home with the kids, I have re-entered the workforce, something I would never have considered a few years ago...But with the kids being's time.  At the beginning of the year, my former employer called and asked me to move back and rejoin the company. After months of driving back and forth...lots of talking and prayer...we finally decided to make the move.

Best decision we could have made...


  1. hmm...I've missed reading these posts! You better be putting a book together! xo