July 30th

I had a brief meeting this morning (really a "good to finally meet you, here are our fliers!") with another Patient Advocate/Foundation CEO and it got my mind thinking on why I do what I do.

And I think it's particularly important to put this out there as we near our Awareness Day (July 30th) and what that means as well.

No, I do not do this because it eases the pain of loosing my son. No I don't do this for kudos and accolades, because I want to capitalize off my son or because I particularly get anything out of it. If we find the cause, it will be wonderful and scary at the same time...it will provide validation on some levels and guilt on others. I do this because it's the right thing to do. No it's not easy retelling and living some of the saddest moments of my life, and no I do not expect everyone to be able to do so, and not everyone can. But for those who can give voice to various conditions and issues around the world for all those who can't, that's what it's all about. I don't think any parent wants to go home from the NICU and say...let me see how many times I can go back voluntarily. Or, let me rehash the worst moments of my child's life...as often as I possibly can. Life is about moving forward with a healthy understanding of where you've come from. My motivation for any of my activism is "well that was tough...and I'm not quite sure why that happened to me...but if I can help make one person feel less lonely about enduring the same journey, it will make part of that hurt a little less and worthwhile."

I have an incredibly big mouth. There's not much I don't share, or talk about or even rant about. "You've got to stand for something or you'll fall for anything" I totally get, part of it is personality, yes I have friends on all sides of all issues, and I completely respect those who are intellectual about their standings, and no one is confused about my own convictions. People can live quietly, and I respect that too. I, for whatever reason of God's hand over me, am not able to be very quiet about things I'm passionate (or angry) about.

That being said, there are several things I've gone through that people don't like to talk about or confront, no one likes to think especially how tiny little babies can be born into the world with problems and need so much and suffer so much. It's why you see children and adults on commercials, and not often babies with tubes and wires coming out of them. But it happens, one out of every 33 babies in the US. And not all of them make it. And who wants to think about that either?

But you should...it could be you...someone you love...someone you know. And no you don't have to live in constant fear that the cheese on your pizza can cause cancer or a birth defect...but we should be aware to improve the quality of compassion that exists in the world.

So again....why do this? Well, I am Avery's mom. I always will be. So in the same way I will advocate for his sister and his little brother, I advocate for him. Personal agenda in all this? That parent's have options, that they have the right to be educated on everything that their child could come to in this disease, to help parents realize the journey of the NICU isn't a destination of home but health, to create a community for gastroschisis, and especially to get the attention of the medical world that 1) it's not "OK" because the survival rate happens to be on the higher side 2) it's existed long enough without research being done as to why and how best to treat it. Those are personal "I get a kick out of..." things.

But beyond that....why do this? Why did I name it Avery's Angels? Why do I continue to be part of it....(when I said 4 years ago I never wanted to be in charge of anything ever again)?

I named it Avery's Angels to empower survivors and families here...that carrying on scars and sharing stories and building a community didn't carry over the worst moments of people's lives...it provided hope and battled the odds for others. Angels on earth that can save more Averys.

Why is the Awareness day on the day Avery passed? Who would want to remember and celebrate that at all?

Yes that day is incredibly painful, but also there is much hope in what transpired that day. Between the lactation consultant coming in and helping me stop my supply with cold cabbage leaves, the hospital sending us the condolence cart, all the paper work to fill out for autopsy, where the "body" was going, the death certificate, preparing to try and set up some sort of fund for Avery and gastroschisis, various team and care members coming by to share their tears, finding an outfit, finding a funeral home and a burial plot, who to contact....and then that night where we finally got to hold him again after 16 days, finally take him outside to feel the fresh air on his cheeks.... only to say goodbye, and carry a body to the morgue....there's so much finality to the ink, the words and the moments...but there buried in all of it is hope....there existed a great family who came together for this boy. A medical team who loved him beyond what I think anyone of them thought they would, a team of people around the country that had no idea who we were but prayed, donated blood in his honor and followed emails, a family of a mom and a dad and various people who loved them that saw them through, emotionally, physically and financially 107 days of life all because there was a little boy. Yes he happened to be mine, and he happened to be named Avery, but Avery's life came to be more than that to me, and what I hoped people would remember. For however short it was, everyone was fighting for the life of one tiny individual and those people who loved him. People sacrificed, contributed and invested. And while it would seem it was for a loss, it wasn't at all. He lived and loved and changed us all....brought us all together for 107 days. And that could be anyone.

July 30th is the day my son left me to go Home. He left to be free and healthy and whole. But he did not leave the fight, he never left the hope. He left them behind in us to carry on. When I stood back from all we had gone through and the pain we were steeping in....I couldn't believe how incredibly blessed we were by all the individuals who picked up various fibers to spin and weave a strong rope to throw to us in our darkest moment. For Avery. And that was what motivated me to say "this is something everyone needs....this needs to be standard."

I also remembered how I had no idea, no matter all the searching I had done, what to expect, who to turn to for answers beyond our own medical team, and how powerless I felt....and after coming through, I realized, it didn't have to be that way for anyone else...that someone needed to collect the info and put it in one place...and granting the numbers...many many people could benefit. That people could come together for community, for fight for a voice and to fight to save and prevent more angels being handed wings.

We....those left behind, those here, we could be angels here to someone else.

So the 30th, while I surrendered my son in this life....I never gave up on what he stood for, and what his life meant and stood for. What the power of 107 days could do to a family, an institution, a community and hundreds of people who didn't know each other. Just one tiny little life, a statistic in a "normal world" and the brunt end of that statistic. Avery didn't have to end as a patient, a number and a tragic margin, he didn't have to be something people avoided in conversation, that pictures didn't need to come down and memories forgotten...because he truly was beautiful, amazing and in his short time here gave us joy and love beyond what we had known before. We could carry forth all of that, and share all of that and perpetuate all of that for the rest of the world and the rest of our lives.

Yes the 30th is hard in the sacrifice it marks for our family. But it's not hard in the love and hope he was, that we're now trying to share with everyone else. The 30th is about remembering, but it's about remembering why...and that is hope. In the losses, in the tragedy of the continuation of this disease, in that battle that babies have endured and children and adults continue to go through, there is still hope, and there is now an incredible community weaving a big rope to hold us all together.

The 30th is about surrendering to hope.

And hope is my business. That's why I do what I do. I want to be part of the best thing I learned from my son....and that is hope.