Pennsylvania Proclamation for CHD experience

Today we traveled to Harrisburg to meet with Senator Brewster and his amazing staff Ranee and Sarah. They welcomed us into their offices, gave us a tour of the Capitol Building including The House Floor, The Senate Floor and the Governor’s office. We had the pleasure to have lunch with Senator Brewster in his office, where we had the opportunity to sit down and talk privately with Senator Brewster. He had genuine questions for Gregory regarding his condition and Gregory being the strong child advocate he is becoming, answered and shared information that could potentially help other children with being diagnosed with CHD. Not many 13 year old children dine with Senators in their private offices in the Capitol, but not many children have AVSD. I am willing to bet not many Senators and their staff take a day to spend it with a 13 year old boy either, so today was a very special day.

There was a large Union Rally that consumed the building and in onto the Capitol’s grand floor. Union workers blocked the building and surrounded and pounded on the windows of the car we rented because it was foreign. Unions chanting “ let us in” to the Capitol, and “we are one”, as they wanted to have their voices heard regarding their union dues and potential changes.  We were forced to exit the car and explain why we were here today before union workers would let us eventually pass to our designated parking space. The capitol was a mad house and it was exciting. To them, their reasons were just as important as our reason for being there today, however little did they know there was a very good chance that at least one of those union guys had or know of someone who has a CHD… and we were there for that union worker, their family or loved one too.

We had the great opportunity to sit in the galley during the Senate Assembly; to listen and observe today’s Senate Hearing in the State Capitol. However, in my opinion, the most significant part of the day occurred when Senator Brewster stood, and took the floor to speak on Congenital Heart Defects. It gave me chills and my eyes welled up with tears (because no one wants to believe their child has a disease or anything terrible could happen to them, but he does, it did and they were speaking about my son). Senator Brewster explained Gregory’s diagnosis of AVSD, a Congenital Heart Defect to the Senate and went further to explain CHDs and how they are the leading birth defect along with many other statistics. He referenced Gregory’s Heart Warrior Foundation, which promotes awareness of CHDs, supports CHD warriors and their families and helps fund research for Children’s Hospital of Pittsburgh Heart Institute. Senator Brewster then proclaimed the week of February 7-14 th as Congenital Heart Defect week and went on to co-chair the CHD Bill 545 with Senator Leach in the presence of a CHD warrior.  The Senate Leader requested that Gregory stand and be acknowledged. With applause from the entire Senate and observers, we as a family were recognized by the Senate and assembly. This moment was profound and extremely moving. It was an honor and privilege to have my young son be part of the Pennsylvania Legislative history.  It brings me great joy knowing, my personal hero, has suffered yet today stood proud in front of our states government and was the face and spoke person for the little CHD voices and angels that are not able to carry the CHD message.

There is something to be said for the experience we had today, it was far more superior than that I had hoped. I can tell Gregory everyday how serious it may be that he is a CHD warrior, how important it is to promote awareness so other children may not have to go through open heart surgery as a teenager in hopes of an earlier diagnosis and eventual cure. However I am only his Mom. It is realized when others, especially leaders, tell you how proud they are of what you are doing to help others. That it takes courage to stand in front of grand assemblies and have your picture taken, your story told and goals for CHD awareness expressed and taken seriously. That our leaders support us and encourage us to continue to reach out to them to attend CHD awareness functions, and they graciously will.

We are just a small family with a boy with a mended broken heart, from a small community making a big difference. What do they say?  Muscles grow stronger when they heal, well the heart is a muscle and Gregory’s is growing stronger for himself and the CHD community.