Merriam-Webster defines an advocate as this:

1:  one that pleads the cause of another; specifically : one that pleads the cause of another before a tribunal or judicial court
2:  one that defends or maintains a cause or proposal
3:  one that supports or promotes the interests of another

Oxford English Dictionary defines an advocate as this:

For whom or for what cause do you advocate?
If you aren’t an advocate for someone or some cause, why not? 

I learned early on in this journey with my son Brendan Bjorn that if I was to see him have the best quality of life possible during his limited amount of years, I would need to become an advocate for him. I found my voice – and the gumption that it takes to raise one’s voice against those who society tells us know better (ie: doctors, politicians, various other care specialists, etc). I learned to question everything, accept nothing blindly, and to research as if his life depended on it. Guess what? It did, and does, depend on it.

I have saved my son’s life many times over simply by being an advocate. 

I don’t say this to pat myself on the back in any form. I have simply done what I felt needed to be done as his mother. Rather, I say this to encourage each of you reading this to do the same. You CAN and you WILL make a difference in the life of your child with a life-limiting illness or disability by being a voice for them where they can’t be for themselves.

Even if you don’t have a child on this journey,
I implore you, the caring reader,
to become an advocate for these special children.

Help our families speak out, because many of us can’t find the words…or the energy…to raise our voices. We need our local and national communities to get behind us and help us advocate. We need your voices to join in with ours.

Being an advocate wasn’t always easy for me. First, I had to overcome any lack of confidence about whatever the subject matter was. Researching and learning all about the subject was key. Then there was coming to the realisation that medical consultants are no better than myself. That one came quite easily and quickly, actually, as soon as I asked questions for which they had no answer. (So, they aren’t Gods sitting up on a pedestal after all!) I have seen too many parents over the past nearly 12 years on this journey be too afraid to question or doubt their child’s specialist. But we must. Remember – we are the voice for our children. We are their advocates. Educate yourself about all aspects of your child’s condition and then find your gumption!

Being an advocate, over time you will develop a teflon-coated skin. Yep, just let those comments and glares from the nurses or doctors or even politicians slide right off your back as you fight for what is best for your child. That life you just saved by being an advocate could be your own child’s. I can’t even begin to tell you how many times I’ve been on the receiving end of those looks and even comments. I have to laugh as I sit here writing this as the memories are humorous in a way. You know, I am “that” mom. Some have called me the B word (that one that rhymes with witch! haha!) but mostly I get told I’m the “momma bear.” That one I’ll accept. And here’s a little secret for my fellow parents: The doctors that are worth their weight in gold are the ones that appreciate your questions, doubts, and the fact you voice your concerns. If they don’t, they have the problem, not you. Keep doing what you need to do!

As the years pass on this journey with a child who has a life-limiting illness, oftentimes we expand our advocacy efforts to the overall cause of life with a disabled, medically fragile child. Yes, that’s right, advocating for political and/or social changes regarding treatment and services for not only our own child, but for all children within this very special group. I have always seen this as part of my son’s legacy. If it wasn’t for him, I would likely have never been involved in this world of special needs and disability. When we advocate for needed improvements – a higher quality of medical services, more respite, shorter waiting lists, special equipment in a timely manner, etc – we help assure a better quality of life for ALL of these special angels, now and in the future, not just for our own now.

So, for all our special angels, be an advocate.