.advocate.

Advocate.

It's a word that both excites me and haunts me all at the same time.

I think it is every parents desire and mission to be their childs advocate. To help give them the correct resources, life skills, and options to live a full life.

And with each new stage of life, our advocacy changes for our children. While they are young, we teach them to talk, to walk, to communicate what they want and need so we can meet their basic needs as a foundation.

When they are in elementary school, it is our job to teach them independence, going outside of their comfort zone. To step in and interject when they need our assistance, but teach them that they can do it on their own.

In high school, it changes to allowing them to learn the lessons the hard way, but always being there to support them. And in college, it's to be there as a sounding board as our children embark on a journey of their own.

Obviously, there is much more that each phase of life entails, but the basics of being an advocate for our children is to be their voice when they are unable to, and also to teach them to be their own voice when they didn't know they could otherwise.

It's a whole new world when you throw special needs into the picture.

No longer are you focused on making sure you teach them all of the "age appropriate" things, but you are focused on them learning basic life skills that seem innate to "normal" kids.

Since Parker was diagnosed with Joubert Syndrome, we were thrown into medical land, where everyone speaks in "medical language". Sometimes I leave the hospital with my eyes glazed over because the information thrown at me is so over my head I cannot even begin to wrap my head around what they are saying.

It's taken me a while to finally understand everything they mean. To separate the emotional aspects from the reality, as well as weed through all of the suggested interventions, therapies, appointments, medications to figure out what is right for Parker. 

We are lucky enough to receive services from an early intervention program. They provide Parker with Physical Therapy 1 time a week and Education Therapy 1 time every other week. The physical therapy is to help with his low muscle tone and help him with his fine and gross motor skills as well as meeting his milstones. The education therapy is to help teach us how to interact and teach Parker in our everyday lives.

The BIG question that I struggle with is....

ARE WE DOING ENOUGH?

Are we advocating ENOUGH on his behalf?

Are we tapping into ALL of the resources available to help aid him to live a relatively normal life?

Should I be fighting for more services? Spending more time at home working with him?

Am I being the advocate that Parker NEEDS me to be?

I dunno.....

And that's what haunts me.

God gave me Parker as a gift, a blessing, far beyond anything I could have every wanted or deserved and it is my job to make sure he has the best resources available.

I am still trying to figure that out, and I think it will be a continual process. As his needs change, so will the resources.

My friend shared a quote with me the other day:

"Be the best mom your child needs"

I really think that fits perfectly in this situation. And I will continue to sort through what that means for Parker and try my hardest to advocate on his behalf when I can.