Greyson's Advocates

12/19/2023

In 2012, I started Greyson’s Advocates to help other families dealing with long hospital stays. In the 11 years since, Greyson’s Advocates has distributed hundreds of medical journals to families, sent dozens of hospital care packages, and met with dozens more families in person at hospitals.

In 2018, I had to switch gears on what we were doing as an organization. I could no longer emotionally handle meeting with families in person, and that year we moved from Oklahoma to Texas where we did not have the same connections. We still provided medical journals and care packages, however we no longer met in person.

2021 brought another move for my family and more changes. I did some research to see what direction I wanted Greyson’s Advocates to go, and while I found several possible options, nothing really provided a passion for me as the element of helping people was greatly diminished in all of the options. Again, I have continued to mail medical journals, but at a much slower rate. I also donated many of our Greyson’s Advocates stuffed lions to our local hospital here to give to children there.

Which brings us to today. I have made the difficult decision to suspend Greyson’s Advocates. Will this truly be the end? I have no idea. But for now, I need to rest, refocus, and figure out what is next for me, my family, and Greyson’s Advocates.

I will keep this page up and share things I feel are of interest to those who follow us. Besides, who knows what the future will bring? However, I will be closing our email addresses, website, and fiscal sponsorship fund by the end of the year.

Thank you to all of our supporters and followers over the years. And to the families we have had the honor to serve, you all hold a special place in our hearts. I thank you all for giving us 11 fantastic years!

Merry Christmas, Happy Holidays, and Happy New Year to all!

Melissa

11/09/2023

For those who might qualify for this research study.

Mayo Clinic Research Study on Children with Hypoplastic Left Heart Syndrome (HLHS)

Mayo Clinic researchers are seeking volunteers for a research study to learn more about children ages 2 through 5 years with Hypoplastic Left Heart Syndrome (HLHS) who received umbilical cord blood (UCB) derived stem cells during Glenn surgery, as well as children who did not receive stem cells at the time of Glenn surgery. The purpose of this study is to look at developmental and social outcomes in children with HLHS who underwent delivery of UCB cells during their heart surgery, compared to those who did not. You do not have to travel to Mayo Clinic to participate in this study.

Remuneration will be offered for your time if you qualify to participate.

For more information, please contact a member of the HLHS study team at 507-538-7730 or 507-266-6459,email us at [email protected] or visit https://mayocl.in/3u1S2yf

02/16/2023

We gave our very last medical journal out today! I have put off ordering since we moved, but it looks like a good time to order more!

02/07/2023

Oh, how we wanted you.
We still do.
Oh, my love, we wish you were still here.
We long for the day when we get to hold you in Heaven.

12/17/2022

50 of our stuffed lions are getting boxed up to go to Pediatric Plushies at our local hospital here in Tifton, Georgia! We donated 5 to them at the local college’s holiday luncheon and the nurse, Destiny, who started Pediatric Plushies was excited to hear we have several more we can donate. 50 is the max this box holds, so that is where we will start.

Thank you to Destiny for giving us the opportunity to support the kids in our community who are in the hospital!

11/29/2022

Good afternoon everyone! Today is Giving Tuesday.

If you'd like to donate to us, please go to https://cfok.fcsuite.com/erp/donate/list and enter "greyson" and our fund will pop up for you to click on.

A bit of good news is that I have a lead on a collaborator here in Georgia (finally), so hopefully refining our mission will happen soon. I will keep everyone posted as developments happen.

Thank you all for your support.

Melissa

Cookies are small text files stored on your computer that remember the things you've added to your shopping cart. To learn how to allow cookies, check the online help in your web browser.

10/24/2022

One of the very first medical journals I gave out about 10 years ago, in the old school format of a full-size binder even, was to the family of a little girl named Joy. Joy was a beautiful child with an amazing family. Her mom gave me lots of valuable feedback on the binder that really helped me fine tune it for future families.

Young Joy passed away last week. Her service was today and I was able to watch it online from halfway across the country. There was a slideshow full of pictures of a smiling and laughing girl who was much loved.

Please keep Joy's family and friends in your thoughts and prayers as they navigate their new normal.

09/13/2022

We are having issues with our email addresses. The issue should be resolved in a day or two. Thanks.

08/28/2022

Today I saw notice that one of the nonprofits I’ve followed for years is closing because of the time, energy, and money expenses that go along with running a nonprofit. Y’all, it is HARD!

But that made me realize I hadn’t posted in a while and some of you might be wondering what’s going on. I have no plans to close GA, but things are in a holding period right now. Part of that is I’ve moved to a new place without close access to a children’s hospital and without the connections I had in Oklahoma. But more than that it has to do with me. Y’all, I’m just trying to survive graduate school while working full-time and raising my kids!!! 😂

Anyway, I just wanted to let everyone know that yes, GA is still here. I still have some medical journals I can send out if anyone needs one. I’m still working toward setting up a scholarship through the Oklahoma CareerTech system (I want to have a significant amount before we set that up).

I hope all of our GA families are doing well!

03/01/2022

Hello everyone!

Today is Greyson's birthday. He would be 11. This picture is from the day of his surgery (not his birthday), but it's a rare picture of Greyson and both of his parents.

It's been an emotionally challenging day, as always. But I wanted to post just to say,

Happy Birthday Greyson!

02/14/2022

I wrote this many years ago, but I'm running out of steam, y'all, so I'm using it again this year. CHD awareness week is important, but it's also emotionally draining. The picture here was at the cemetery after Greyson's funeral.

CHD Awareness Week, Day 8 (It's a Beatles week apparently. If you are too young to get that, please don't tell me.) Tribute to my CHD Angel
What can I say about Greyson? There is so much, even though he wasn't even 6 months old when he died. He was beautiful, sweet, and good. While I'm sure he was in considerable pain most of the time, he was usually very happy and smiling. He had such wise blue eyes. It seemed like he was trying to learn as much as possible about those around him and what was going on. Since his death I've come to the belief that God sent him here to learn specific things because that knowledge was needed to fight the great battle against the devil when that time comes. I think he was sent to us so that he would know unconditional love, but also witness the sorrow that goes along with that. That's the thing about love: when we open ourselves up to unlimited love we give ourselves over to unlimited pain. Luckily the love is worth every bit of that pain. I'm not sure why some of us are chose to experience greater pain than others by having to have our children be so sick or having them die, but I trust in God that there is a reason and I will learn it some day.
I have lost many people in my life, including my dad. If you haven't lost a child, trust me when I say that pain is in a league of its own. I think about Greyson all day, every day. The crying fits become more infrequent, but they still come and they always will. The sorrow is always there regardless of whether it streams down my face. Grief over the loss of a child is not something a parent (a caring one at least) can ever "get over." I have learned many lessons from my experience with Greyson, but I think one of the most profound and important is this: Everyone grieves differently. You cannot judge someone else because they grieve differently from you, or the way you think you would in their situation. EVERY JOURNEY IS DIFFERENT. Our journey with HLHS is not the same as anyone else's, even if they went through all the same situations we did. Everyone is individual and unique (patient and parents included). Austin's thoughts and feelings about various things were not necessarily the same as mine were. The important thing to remember if you want to retain a relationship with someone after a tragedy is that you have to accept the differences and respect them and the person involved. I'm the first to admit it's not always as easy as it sounds. But Austin & I have navigated it wonderfully and are stronger for it.
It may seem easy for me to talk about, but those who know me know it really isn't. But I do it because I love my son and this is the only way I have left to be his mother and give him what he deserves for his life. So I will always gladly answer any questions anyone has about Greyson, CHDs, HLHS, pulse ox, infant or child death, or anything else related to all that. I never want anyone to feel like they can't ask me because they are worried about my feelings or whatever other concerns they might have. I have spent my life trying my damnedest not to crying in front of people if at all possible. I have done more of that since Greyson came along than I ever thought I'd be comfortable doing. I might "tear up" a bit while talking, but I don't think I've ever broken into tears in general conversations about him. So, ASK AWAY! I'll do my best to answer.