by Martha Kate Downey
written, 9-6-97
for the TNSSG conference in Baltimore, Maryland November 1, 1997

Advocacy, parenthood, strength, caring, compassion, applied knowledge, tireless work, endless tears and lasting smiles.

As the world watched a princess being honored with great pomp and circumstance and a small, quiet nun being honored for her humility, it so clearly shows our responsibility to serve and act, not because of who we are but because of more where we are, who is in our lives.

Both our examples could have chosen different paths,  the quiet nun could have lived a less dedicated life and no one could have faulted her.  The princess could have simply chosen to enjoy a privileged life, a life of being a good mother.  Content to be taken care of and pampered.  The nun, coming from the affluent family could have done the same.  But instead, they both made conscious choices, not to be known for their greatness but for their simple response to use their personal gifts, their personal opportunities to contribute support and compassion to a world in pain.

We were so moved by their acts toward others, not their titles nor their contacts, but by the simple everyday acts they chose to serve those around them.  Whether the act is done by a member of an order, or a member of royalty, or a member of a support group, the message, the effect and importance is the same.  We have the same responsibilities, the same need and the same opportunity to contribute to our world  the gifts we have.

As we come together here,  I see  not just a group of people but also the face of a friend here that of a dedicated doctor there.  And that is the specialness of advocacy. Each acting individually and  corporately, each with our own skills, our own interest.   I cannot do genetic research; I have neither the knowledge nor the skills to do that, but I can give a hug.  I can write a poem.  I can listen and reflect on what I see.  I can help determine how that research is used, help it become accessible to others.

Our advocacies come in so many different ways.  From Wanda’s energy and constant focus, to Karen’s tireless care, and Pamela’s never ending fund raising efforts, we advocate, never knowing the longer effects of our actions but doing what we can at this minute, in this place, in our own way with our own gifts.  In order that these gifts be used most effectively, we must come to trust one another, encourage one another, learn and grow together.

Many of you have heard so often my message of trusting yourself.  That is the basis for true advocacy.  Knowing that you must give the gifts you have, develop those needed and freely offer them to those in your world. Remembering that there are those who will not always believe your message, not always trust your judgment, not care with your intensity.  You must carefully guard your right and obligation to act and to speak honestly, openly, courageously.  There are those who would choose an easier path than the one you know is best.  You must challenge them, educate them and support them.  You, as parents must remember that your most important role is that of  providing a constant focus on what can be, what will be.  We, as parents of those with Noonan’s syndrome have been set down in a very hallowed place.  Not because of who we are,  but because of who we parent. We are given the opportunity for growth that only those who share lives with challenged children can enjoy.  It is through living with those having exceptional needs that we develop exceptional skills to care for them, to
understand them.  It is in living with grief that we learn to celebrate the goodness of life,  embracing all of life, not just the easy, comforting parts.  But the whole.  We must in every way we know impart that to those who will work with our children whether in providing education for them or as they meet their physical needs.  Our steadfastness, our belief in ourselves as the primary authority is what keeps others focused and motivated as they deliver their services.  They must sense in us our strength and vigilance.

Today, I can’t tell you how to advocate.  I can’t tell you what your job will be, but I can challenge you to act on those impulses that come to you.  Be focused in your endeavors, be brave, be consistent and far sighted. You all will be coming from your own place, with your own skills.  Those of you who have Noonan’s will be telling an intense story, showing courage and humility.  You will be educating the educators and helping to unlock mysteries of medicine.  Your bodies will teach us not just about Noonan’s syndrome but about other genetic intricacies.  It is through the “abnormalities” that we learn and study the possibilities for positive change.

Our story as parents is not one of being specially called to accomplish unusual acts of caring, but rather one of being like our children.  We are merely to follow in their footsteps to bloom where we are planted.

oh, one last thought....Kate says at the end of my speech, to remember and say,  “Thank you!”

(this last will be said just like Kate told me to say it, with a small bow and by speaking as well as signing “Thank You”

One thought I have today.... the world will reflect your viewpoint.  Tell about NS in a positive, relaxed way.  That how you want your children and the world to view it.

The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.