Tuesday, March 2, 2010



  v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] verb,-cat·ed, -cat·ing, noun
–verb (used with object)
to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.
a person who speaks or writes in support or defense of a person, cause, etc. (usually fol. by of): an advocate of peace.
a person who pleads for or in behalf of another; intercessor.
a person who pleads the cause of another in a court of law.

-from Dictionary.com

Excuse me for a moment while I climb atop my soapbox.

If you have ever loved someone, then you are aware that with love comes responsibility.  The responsibility to care for and protect the ones you love.  During the different times and seasons of love, sometimes this responsibility can be a heavy burden to bear.  Trying to care for and protect an adult suffering from the consequences of addiction is a very different experience than caring for and protecting a curious toddler who is constantly climbing and exploring.

I believe very strongly that part of this responsibility includes standing as an advocate for the ones you love.  As a mother, specifically, it is my responsibility to speak in support and defense of my children in regards to their needs.  While there are many social, clerical, and government organizations out there who share this mission, none of them love my children and know my children the way I do.  Therefore, none can be a better advocate for my children than I can.

Let me share two examples with you.  

Example A:  I had a conversation with a fellow mother who shared some of the frustrations and difficulties she was having with one of her children.  During the course of the conversation, we bounced ideas off of each other.  I voiced a few suggestions.  By the end of the conversation, the other mother had a plan of action.  She was ready to make phone calls, gather resources, find a helpful doctor.....she was ready to take action.  

Example B:  I had a conversation with another mother.  This mother also had frustrations and concerns about the behavior of one of her children.  I listened, and agreed that her situation was difficult.  I consoled her.  I voiced a few suggestions of things this mother could try and resources that she could seek in order to help her child.  For every suggestion I gave, the other mother had a reason she couldn't use it.  A book to read:  why should she read it knowing her husband wouldn't and then she'd be the only one using the disciplinary techniques?  A trip to the doctor: the child hated doctors and would scream the whole time, why bother?  A conference with the child's teacher: she just knew the teacher hated her child anyway, what good would that do?  By the end of the conversation, I felt as down in the dumps as my friend.  She thanked me for listening, and sighed, "I guess I'll just have to keep hoping and praying that my child will change."

Which of these mothers was ready to be an advocate for her child?

I hope you answered the first one.  Don't get me wrong, I believe in the power of prayer.  But I also believe that an integral part of faith is action.  Pray all you can for help as a mother, but for heaven's sake, jump up and DO!  

If you walked into the kitchen and saw your diapered darling climbing onto the top of the refrigerator, would you kneel in prayer and hope for the best?  Of course not!  You'd say that prayer as you rushed towards the refrigerator, arms outstretched, and you'd pull that baby down from his precarious perch and you'd tell him no and then you'd come up with some very creative way to keep that child from ever climbing up that refrigerator again.

I feel strongly that God has not left us to fend for ourselves.  He has given each of us gifts that give us insight and inspiration when we need them most.  We can access these gifts particularly in our roles as mothers.  Sometimes you just know that your child has a need that is not being met.  This is the time when you are called upon to use those God given gifts and act as an advocate for your child.

Talk to the teacher.  Go to the doctor.  Meet with the therapist.  Plead for the resources.  Join the support group.  Change the babysitter.    Look for the clues.  Research the diagnosis.  Bring concerns to the school board.  Learn the lingo.  Find the right doctor.  

These are the things that no one can do for your child better than you.

A fellow heart mom, Stefenie, shared a story on her blog she'd heard about another family.  Their son was born with a complex heart condition that eventually necessitated a heart transplant.  As a baby, however, he was misdiagnosed.  The original diagnosis?  Allergies.  Allergies.

Science is not perfect.  Doctors do the best they can, but they aren't able to spend 24-7 with each of their patients.  That's something only a mother can do.  And doctors don't have those God-given gifts that allow them to serve as the perfect advocate for each of their patients.  That's something else only a mother can do.

I'll admit, it took a while for me to step up to the plate and take on the role of advocate.  It's a skill that I'm still developing.  But I've improved.  

Before Superkid was born, I knew there was something about her that was different than my other children.  I was told, very clearly, that she would have physical challenges.  My husband received the same message.  We were so prepared for her arrival this way, that both of us were a little shocked when she received a 10 on her APGAR score, was handed to us pink and tiny and perfect, without any evidence of anything that set her apart from her healthy siblings.  For months, Superkid seemed fine--she just didn't get chubby the way my other babies had--but the warning I had been given was constantly there: something was different.  The pediatrician chalked it up to her having a different metabolism than her siblings......until her nine month well-child visit, when he realized that Superkid hadn't gained weight since her six month visit, and heard a faint heart murmur.

At that point, things happened very quickly, and my husband and I often look back on some of our initial experiences and decisions during the first few months of her diagnosis and second guess ourselves.  We think we could have been better advocates.  We sometimes wonder what effect different actions on our part would have had on Superkid's condition, and we've had to learn to forgive ourselves and recognize that we're all on a learning curve.  Some lessons have to be learned the hard way.

I guess my point is this:  if you have a genuine concern about one of your children, take action.  Pray for support and guidance and then get up and go find the help you need.  Don't wait for things to change or things to get worse or for someone else to come and diagnose and fix the problem.  Advocate.

The following video really doesn't illustrate how to be an advocate for your child.  I just feel like I'm supposed to post it on the blog, so humor me.  I came across it yesterday, while I was looking for another file.  It is 19 seconds of footage that my husband shot of Superkid and I, soon after she was diagnosed with her CHD.  At that time, we'd been trying to explain to our doctors brief "episodes" that Superkid was having.  They were very frightening to us, but never occurred in a doctor's office and the portable heart monitor Superkid wore for several days didn't detect any problems.  We shot this video to show to our doctors so that they could see what we were seeing at home.  As we later learned, the little noise Superkid was making is something called "grunting", a classic sign of respiratory distress and heart failure.  I believe that Superkid was admitted to the PICU of our children's hospital just hours after my husband filmed this.  If you ever see your child or another child breathing like this, you need to get them to a ER very quickly, and urge the staff there to take a chest xray to look for fluid in the lungs.  

1 comment:

  1. Great job advocating! I was very moved by your post. I think that more and more families can be inspired by you and others that they too can be an advocate if they are just willing to stand up. They don't have to controversial or in your face. All they need to do is allow the opportunity for their voice to be heard and to speak for their child.

    Stef, Ryan, Wyatt and Logan