Meet Rex

Child's Diagnosis: Coarctation of the Aorta (repaired), Bicuspid Aortic Valve, Mitral Valve Stenosis

Has Kerrington’s Heart impacted your journey? If so, how?: The support Kerrington's Heart moms showed us the moment we were thrust into our CHD journey helped us make it through those early days and weeks. They did what others didn't know we needed done. Now that Rex is "stable," the heart mom meetings continue to be a blessing to me. This is a community of women who "understands."

What’s one thing you wish you’d been told at the beginning of your journey?: I wish someone had told me the early days/weeks in the hospital seem long, but would one day be a blip on the radar. I also wish someone had told me early on to celebrate Rex's achievements and milestones whenever they come - he may not hit the target for typical kids, but all he has accomplished IN HIS TIME is amazing and worth celebrating!

What’s one word you would use to describe your journey and why?: Different. With a typical child and non-typical child, I had to throw my expectations out the window and just accept the differences. All children are different, but have one with special needs sort of highlights the differences. Different isn't bad or wrong. I celebrate what each of my children has taught me and what they teach me together.

Please share a little bit about your story:: I didn't know Rex had a CHD until the day before he was born. Back up about ten days when my ultrasound revealed that my amniotic fluid was low and I was put on bedrest. When I went back a week later, the amniotic fluid was normal, but not all chambers were showing in the ultrasound. We were sent actoss town to the pediatric cardiologist where she ruled out more serious CHDs, but informed us Rex needed to come on out (2.5 weeks early) because his CHD was preventing him from continuing to grow in utero.
Rex arrived the next day and was doing well in the NICU for the first week, but was transferred to UK on day 8 so he could be prepared for surgery. The coarctation in his aorta was repaired when he was 13 days old. He spent another couple of weeks learning to feed and gain weight.
Since coming home, Rex has had his uphill climbs, but I am happy to say most of his challenges have not been hear-related, but more to do with developmental delays than anything.
I remember those early days in the hospital when we were clueless and learning all we could about heart function and what Rex's future may or may not hold (healthwise). The moms of Kerrington's Heart met us with open arms and ears. They made sure we were connected with the right hospital staff to answer questions and met some of our physical needs with a care bag and hospital meal vouchers. Now, I look forward to our gatherings so much!

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.