Navigating Advocacy
A V A
With many endeavors and life callings, including being a wellness advocate- a huge part of that is teaching others HOW to be their own advocate or advocate for their children's medical needs.
I have managed to attract a pretty awesome team of our own between Ava's specialists, nurses, health team for plasma infusions amongst all the connections and friendships- we have a pretty incredible support system. (And by the way I'm not talking about family).
Being a Momma was one thing and it's a full time job. Being a Momma of a child with a silent disability is a whole different level of understanding. And you can't understand it until you're in it, and I hope those reading this are fortunate enough to not be here. 🙏
I told Ava this evening as I snuggled her to bed how God has given her this, not as a burden to carry but as an experience she needs to live for her future self. Her immense wisdom and understanding of how precious life is goes beyond her years. I brushed my hands across her forehead and told her how brave and strong she is. I also told her it's okay when she's scared and to feel ALL HER FEELINGS- they are important and valued. We do a lot of inward work as we journey on in this life- journaling, guided meditation, affirmations, paint therapy and more. We mindfully have to… to keep she, her brother, her daddy and I all aligned and will look back at this time with even more gratitude- able to discuss the struggles and triumphs. Not tuck them under the rug. We need to release those traumas before they grow.
EVOLVE.
When trauma happens, big or small it get's stored in our bodies. As simple as a fall, embarrassment or an argument. By brushing it off, stepping over it or acting as if it never happened is creating a dark space for this trauma to live and fester over time- it will show up in other places in our lives. Maybe years down the road, if we don't get the tools one needs and practice.
Tonight Ava had trauma.
Tonight she was in fear, she was scared and shaken.
I reminded her she was safe and we will figure it out. As her hand was being held by her best friend who cheered her on saying things like "I believe in you and you can do it” and her best friends mom stood in the door way watching holding her breath as well as holding back tears. I was trying to mathematically (🥴) figure out what options we had to give Ava the power over her body to choose what came next.
Unfortunately giving up and not receiving her plasma infusion was NOT one of the options.
It took an hour, but everyone was patient and calm- Ava felt supported and we got through it. Ava and I have this incredible connection when we look into each other's eyes it's like I see the depths of her soul, what she's thinking and she sees mine. It's unspoken words I can hear and she can hear mine too. It's a beautiful thing this unfortunate disease has brought into our lives.
Yet I'm so grateful. 💫 #mysoulmate
So while Momming hard to be compassionate, I'm also trying to problem solve a situation I'd never been put in before in the 3.5 years of plasma infusions we do regularly every 7-10 days. (From experience panic is NEVER the answer.) Calm, collective thoughts and having supporting friendships in her bedroom this evening helped not only her but supported me in making rational decisions which lead to Ava having choices in how we needed to move forward.
I hope if you get anything out of this blog is that the more we allow ourselves to be and recognize our vulnerability, witness others hardest moments-the more resilient we also become!
From all views.
Her best friend.
Her best friend's mom.
Me.
Her Daddy.
Her big brother.
Ava ❤.
I can't feel Ava's feelings or her pain. I experience it through being her Momma. Through the woven bond she and I have since we moved together for 10 months in my womb. It's incomparable to anything and my heart feels her internal fear and hurt.
No one can make you feel a certain way. There's no magic switch we can push to change the way we feel.
No one can make you change how you feel about a situation and unfortunately so
much division in today's world is due to people holding onto their fears and entitlmet of being right. Of having all the answers. Guess what even professionals don't have ALL the answers!
I can attest to that within my own careers ✋.
Walk just ONE day in someone else's shoes.
You only see what you see. You don't know how they feel, their silent struggles, what they have been through, their past, their present situation or traumas. Give up the need to be "right and just" and give in to listening with love.
Accept that we are given free will and people have their own feelings.
Beautifully real, raw and perfectly imperfect humanity.
You really have no idea.
NO IDEA what another's journey and road have been crawled. Please don't dare to ever judge them for it. Instead go look in the mirror and ask yourself why am I judging? What have I been through? How can I learn from this?
To learn more on advocacy please reach out. My husband and I both are support group leaders for wellness within the Immune Deficiency Foundation Community. We are for ALL MEDICAL CARE and needs. Not just plasma infusion, asthma or AMPS.
We also have a son with heart condition journey and our own health travels.
I've learned there are great doctors out there and there are also ones that are not a good fit for us and other’s that have their own agendas. Ava's Journey is a part time job. You need to be willing to step up, ask questions, get several opinions and KNOW you have choices, follow your Momma gut. Find the right fit, the kind of professional who is really listening and does not have their head in a book. Because evolution is in full effect. God gave us two ears and one mouth for a reason.
Start recognizing your reactions.
Finally, you can't control or change anyone. You can only control how you receive words, actions and reactions from others. That's 💯 on you. We can choose to be right or choose to be happy.
We were given abundance and somehow we simply manage to get in own way at times. Take a closer look inward.
As I lay here next to my daughter asleep, I watch and feel her angels working on her to help her release tonight's trauma and make space for more light.
XO Aubrey, January 11, 2022