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 scary...to Hank...it 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!
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 older...it'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...
