Maggie goes to Washington

Merriam-Webster defines an advocate as “one who supports or promotes the interests of a cause or a group.” While this is an accurate and succinct definition of the word, being an advocate is as complex as it is gratifying, as frightening as it is empowering, and as draining as it is rewarding, and every advocate’s experience is as unique to them as their reasons for sacrificing so much of their time and energy for it are.  My reasoning?  HER.  My beautiful little bundle of fire and sass whose sweet smile lights up every room and whose full bellied laugh makes it impossible to stay upset with her when she’s being mischievous is my motivation and my constant.  She is my gentle, and sometimes not so gentle, reminder that not only her story but mine as well matters.

                A year ago, I had the opportunity to advocate for Evelyn and the CHD community on a national level in Washington D.C.  To say that I was terrified and intimidated would be a gross understatement, and I made my usual joke to Christy, with Kerrington’s Heart, that my fear of public speaking made me an unusual PR Director.  Still, I’d been feeling moved to participate in the Conquering CHD Legislative Conference every year since Evelyn was born, so I buried my fear under too many coffees and an eagerness to make a difference and headed to the US Capitol.

The first day of the conference was intense to put it mildly. It was informative and emotionally charged and really emphasized the responsibility we were carrying as representatives of all heart families from each of our states.  We heard from Congressional aides about what to expect and were given their assurances that the people we would be speaking with HEAR us and that our words and us being there carried much weight with them.  We also heard from CHD warriors about their journeys and what our passion and presence meant to them.  We heard from a nurse and a mother who told her heart wrenching journey of losing her child to CHD.  By the end of the day, there wasn’t a dry eye in the room and you could feel how charged the atmosphere had become with renewed fervor for our cause.

The second day of the conference was comprised of our actual meetings at the Capitol.  I was a jumble of anxiety but knowing that my fellow advocates would be with me and that we would get through it together bolstered me, while thinking of Evelyn and the many CHD children who were counting on me to be one of their voices, gave me the courage I needed to calm my trembling nerves.  The meetings were incredible and empowering and every new person who I spoke with just fueled my passion for conveying the importance of what we are fighting for even more.  Every person we met with asked questions not only just about CHDs in general but about each of our children as well.  It was a long day full of walking all over the Capitol, sharing information and journeys, and sometimes even tears, but when I left the Capitol building after the last meeting, I felt energized in spite of the physical exhaustion, knowing that I had made a difference, that WE had made a difference.

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This year we will be taking a team, of those most interested, to Washington (Virtually). We ask that only those who can attend, register. Please register at the link below. We will then provide you with all the necessary information to attend the virtual event! Deadline is Friday, February 12th to register with Kerrington’s Heart. If you would like to purchase tickets please visit the Conquering CHD link below.

Registration is required for the Conquering CHD Virtual Advocacy Conference.

Advocacy Conference + Pre-Conference Health Disparities Meeting

• $25.00 per attendee

• This ticket includes virtual admission to pre-conference meeting, advocacy conference day one, and advocacy conference day two (legislative visits)

• Due to the cost of scheduling visits, registration is non-refundable after January 1, 2021

• Attendance at Advocacy Conference day one is required to participate in Advocacy Conference day two

Advocacy Conference ONLY

• $25.00 per attendee

• This ticket includes virtual admission to advocacy conference day one and advocacy conference day two (legislative visits)

• Due to the cost of scheduling visits, registration is non-refundable after January 1, 2021

• Attendance at Advocacy Conference day one is required to participate in Advocacy Conference day two

Click here to see the agenda: Agenda Virtual 2.1 (conqueringchd.org)

Helpful Tips to Being a Great Advocate for Your Child

What is an Advocate?

Webster’s dictionary defines an advocate as someone who “pleads the case of another”.  Children with special needs or ongoing medical issues present a unique situation that requires an advocate willing to work hard on their behalf.  As a parent, you should ask yourself, “Who is the most qualified to fight for my child?”  Who is going to work harder than you to make sure your child receives everything they need?  The answer, of course, is YOU.  You as the parent are more qualified than anyone else.  Being an advocate for our children is one of the most important hats we wear as parents.

However, fulfilling this role is not always easy.  The definition above doesn’t claim that advocates are perfect or always make the right decision for those we’re working for.  You WILL make mistakes.  Accepting this fact now will make you a more effective advocate for your child in the long run.  Don’t doubt yourself.  Don’t dwell on mistakes.  Look forward and know that because you have your child’s best interest at heart, you’re going to be successful.

Be prepared

It has often been said that success is when preparation meets preparedness.  You’re not going to be a successful advocate for your child by being lucky.  You have to be prepared.  Whether you are advocating for medical needs, financial assistance, or education services, you need to develop a purposeful plan to effectively advocate for your child. 

1.) Ask Questions.  What are you child’s needs?  What are your child’s goals?  What are you hoping to accomplish?  Answers rarely come unless questions are asked first.      

2.) On Paper.  On Purpose.  Simply thinking through things is not an effective means for developing a plan.  You have to write it down!  Create a list of what you want to accomplish.  As question arise, write them down so you can remember to find answers.  

3.) Organize.  Don’t Agonize.  Organization solves a lot of problems.  Be sure to file and keep good records of all medical, school, and other important documents.  Keep a list of all contacts, for example doctors, service providers, social workers, home health, and any support system you might have during your family’s journey.

Be professional

As humans, it is our natural tendency to react when obstacles get in our way.  It is so easy to become frustrated when various roadblocks prevent us from doing what we know is best for our children.  Many parents have allowed frustration to turn into anger and have allowed anger to fuel their actions.  Successful advocates realize that positive outcomes are the result of positive attitudes.  Pleading your case with professionalism, not anger, will always yield better results.

Become an expert

Part of being prepared, and being professional, is equipping yourself with knowledge.  Being your child’s advocate is no small task.  To be effective, you may need to learn medical terminology, disability laws, the special education system, and various other services provided by a number of agencies.  Expertise is not developed overnight, but you have to start somewhere.

1.) Find resources to educate yourself by any means necessary.  Take an all of the above approach to finding information.  The internet, books, medical journals and other people can all prove to be valuable resources.  Be cautious that the information you are using is from a reliable source.

2.) Study state, federal and education laws that affect your child.  Know your rights and responsibilities.  

3.) Contact agencies and service providers to learn what resources are available to you. 

4.) Ask questions and don’t settle until you find the answers.  Don’t be afraid to call after a doctor’s appointment to ask questions that you may not have thought of while in their office.  Seek out other sources if you don’t find the answers you’re looking for from you first option.

5.) Make connections with other parents that understand your journey.  These are individuals who have been where you are and are often the most willing to help.