Monday , 23, June 2014 3 Comments

Why you have to ADVOCATE for your child!I’m going to get a little serious in this post.  It’s a post that I have wanted to write since I began this journey with CFF.  It is something very important to me, but also very personal.

Have you ever heard the Elizabeth Stone quote, “making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body”?

It’s the truth, right? 

Because, once you are a parent, your life is forever changed.  For the better.  You have this little human who needs you.  Who thinks you are the most important person on earth.  Who loves you to the moon and back.


What happens when you are faced with adversity in raising your child?  What happens if he is bullied?  What about if she is having difficulties in school?  What if he is sick?

When your child is hurting (whether emotionally, academically, or physically), it is your responsibility to advocate for her.  It is your obligation as a parent to protect him.  To be that hero she believes in.

Back in February, I told you about our son Luke.  He was born with a congenital heart defect called hypoplastic left heart syndrome.  After his open heart surgery at one week old, one of Luke’s cardiologists told me something that has stuck with me.  He said, “you and your husband are Luke’s only advocates.  We {the doctors, nurses, and specialists} are all very busy, but you know him the best.  It is up to you to let us know if you see something wrong”.

Guess what?  I did notice something wrong when Luke was five weeks old.  He was sick.  His little heart (the half that actually worked) was getting more and more sick.  I tried to follow the cardiologist’s advice.  I really did.  Luke was at clinic the day we lost him.  I told her (the cardiologist) his symptoms, that he was not the same.  I told her.  She sent us home with some new meds:  a blood pressure medicine and a reflux med.  We were set to give Luke the medicines that night.  We were never able to.  We lost Luke that evening and I still feel as though I failed as his advocate.  If I had just pushed more, demanded more, gone out of my comfort zone.  Maybe we wouldn’t have lost him.

I want to use the lesson of Luke’s life to promote advocacy.

I was forced to use this lesson about eleven months later when our fourth child James was born.  Our “rainbow baby” was also born with a major birth defect:  an omphalocele.  Essentially, his intestines were outside of his body, inside of his umbilical cord.  There I was, back in a NICU, having to see my baby struggle.  But, I remembered the mistakes that I had made with Luke and I knew that I would not repeat them.  I would ask the questions, tell my concerns, and make sure to advocate for him.

I continue to advocate for my kiddos (at least, I try my best).  It’s not all medical stuff.  It’s been academic matters, peer concerns, and tween girl issues (go figure).  I don’t always get it right, but I am proud of myself for at least trying.

In case you’re wondering “why now?” or “what precipitated this post?”, it’s because I witnessed an amazing act of parental advocacy this week.  I saw a mommy and daddy literally save their son’s life through advocacy.  This momma and I have a lot in common:  three boys, one girl.  Her third child is also an HLHS angel.  And her fourth child was born just a few weeks ago with an omphalocele.  Let’s face it, most people haven’t even heard of either defect, let alone have one of each affect their family.

This sweet, absolutely gorgeous little boy, has had a difficult start in this world.  He has struggled and the doctors were losing hope quickly.  They went so far as to have “the meeting” with mom and dad.  Those of us who have had medically-fragile kids know all about those meetings.  It is when the doctors say that it is time to let go.  To say goodbye.

But this beautiful big-eyed baby boy’s momma and daddy knew that this was not the end.  They knew that he needed to be given a chance, but they knew that they had to move him in order to give him that chance.  So they advocated.  They fought for their baby’s life.

Guess what?

Yesterday, that baby boy was flown to another hospital.  One of the best in the country and one that is equipped to deal with his issues.  Because his mother and father advocated for him.  For his life.  I am so proud of them, especially for his mommy, because she is a pretty special lady.

It’s stories like this that prove the power of advocacy.

If your child is having difficulty at school.  If another child is teasing her.  If he is sick.  Just remember:  you are the only advocate for your child.

After all, if your child is hurting, your heart is breaking.  Why not fix them both through advocacy?

Have you ever had to advocate for your child?  What things did you learn from your experience?


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  • Amy J says:

    I love this Bernie. You are so right….thank you for writing this!!

  • […] you have read any of my posts, you may remember our son Luke.  We lost Luke about 6 1/2 years ago.  He was a gift.  A teeny-tiny, broken-hearted little gift. […]

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