A Shout Out!

Well, where do I start?
I will start with saying a very big THANK YOU.

Yesterday I was notified by an anonymous reader of Keziah's blog that the Facebook page "Jesus Daily" had taken a picture of Keziah from 2 years ago and added the words "God can heal" to it, asking their fans to click "Amen" if they believe that God can heal "this poor little sick girl." They took this picture without permission.

If it wasn't for that anonymous comment, letting me know what they had done with Keziah's picture, I would never have known. So that is why my first Shout Out goes to you, whoever you are. I can not thank you enough. Because you made me aware of this, I was able to take action. So again, thank you.

You can imagine how my stomach dropped when I saw what was going on with her picture. It was not up for long and when I first looked, there were over 99,000 comments on her picture, most of them being "amen". There were over 10,000 shares.

Now, don't think I am naïve. Of course I knew that there would be a risk of this happening with an open blog. I know that once you post a picture on the web, it is 'out there'. I get that. However, that doesn't mean what they did was right. And that is why I fought tooth and nail with the administrators of Jesus Daily for close to 2 hours before they agreed to take the picture down.

And that leads me to my second Shout Out, and that is to our nevus community. Without them going to bat for Keziah, I don't know how this all would have turned out.

As soon as I knew what was going on, I went to our nevus support group for help - what do I do to get that picture down off that Jesus Daily Facebook page??! By this time, Keziah's picture had over 100,000 comments and 11,000 shares. I was trying hard not to panic, as well as telling myself not to waste my time reading some of the comments (no, not all of them were 'amen'. While many were prayers as well, there were a few mean-spirited comments.)

(If you are wondering what picture they used, it was of course one that they knew would play on peoples' emotions, of her with her full birthmark as well as her first two expanders on her face at their largest size.)

Sure enough, our nevus support group came through, getting me the contact info of the administrators, as well as many of them reporting the picture; some even filed a copyright complaint on our behalf!!

I emailed one of the administrators of the Jesus Daily Facebook group, demanding that they take the picture down. I did not expect a response, but about 15 minutes later he responded back, "confused" as to why I would want the picture down, as they (Jesus Daily) believe in the "power of prayer" and why would I not want 1000s of people praying for my little girl so that God can heal her.

Well, you can imagine my response to him.

 I also kept posting on their Facebook front page, letting everyone (their fans) see what they had done: taken a picture of our daughter without our permission and are misleading people with it. Every 10 minutes, I posted again my thoughts of what they had done, and did this until they took the picture down.

Finally, after emailing back and forth with them for almost 2 hours, as well as our nevus support group reporting the picture and filing complaints for copyright infringement, Jesus Daily finally agreed to take the picture down. By this time, it had over 102, 000 comments and 12, 000 shares.

So again, nevus family ('cause that is what you are): thank you from the bottom of our hearts.

Now, onto Jesus Daily. What can I say?! While they labelled our little girl as "sick" and "in need of healing", I do believe that is exactly how I would label the administrators of this group, as well as all their fans.

What sickens me and makes me even more sad about all this was seeing how many people they are misleading, not only about our daughter (and many other kids they've 'exploited'), but misleading them about our Heavenly Father, our God.

So please, I urge all of you to have an eye of discernment, especially with today's social media. Stay away from these so-called 'Christian organizations". They often do not promote the God of the universe, but a god of their imagination, as well as taking pictures that are not theirs and using them to promote religion. (for a further read on this, I strongly encourage you to read this article. It is eye-opening with so much truth to it.)

And please, please, please, STOP sharing photos that start with "My brother thinks he is ugly, please comment or share to let him know he is not." or "My sister thinks no one loves her, please comment and share to let her know she is loved." or in our case: "Please comment "amen" if you believe that Jesus can heal this poor sick little girl.".

As a friend aptly called it: Clickbait. And that is exactly what all of this is. So see it as that and don't fall for it.

In conclusion, having gone through this has really made us think of this blog (as well as our family blog). However, we just do not want to make it private as we have met so many people through this blog, mostly people who are dealing with a nevus. We wanted this blog to be educational and possibly a resource to those who have a nevus or a nevus owner in their life. And for the past two years, I know this blog has been beneficial to many. And so, we will leave it open.

HOWEVER, until we can figure out a way to protect her pictures (I tried the watermark idea.....things just didn't go right with that), I will not be adding another picture to this blog. Hence no picture on this post. I will be looking into it right away, 'cause really, a blog is quite boring without a picture or two! :o)

Thanks to everyone who showed their support in one way or another! And most of all, we are thankful to God for the people He has put in our lives that care not only for us, but for our beautiful little girl.

It's Been Awhile.....

Yesterday it was 2 months since Keziah had her last big surgery to remove a large part of her scalp nevus, so I thought I'd give a quick little update as to how she is doing.

Well, what can I say. She is doing well!!

She is happy and goofy a lot of the time, enjoying life like a 4 year old should be, without having to worry about weekly fill ups and the stress that all comes with that.

When people ask her how she is doing, she is thrilled to tell them that she doesn't have to go to the hospital for a "whole week!" :o)

Speaking of the hospital, about a month ago, something very special came in the mail for Keziah - something that was mailed by Ms. Valentina, our "check in" lady at the Plastics clinic!!!

Keziah was quite surprised and excited with her gift of a new hat. THANK YOU, Ms. Valentina!!!

Now onto her incisions and how they are healing. I must say, these incisions have taken a long time to heal up. We are still dealing with scabs and having to clean her incisions at least once a day. But it's getting there, looking much better than even a month ago.

We are eager for her hair to grow back where it was shaved. Once that has filled in, it'll definitely cover the incisions that will not have hair. I'll be honest, I find the incisions wide (wider than I thought they'd be...) and they will only widen more as her head grows. So I definitely see some scar revision that will need to be done in the far future, once her head is done growing.

But we are able to cover up the scar pretty good as she does have lots of hair

 Keziah is 4.5 years old, which means when we go out in public (which is all the time), people now ask her what is wrong with her eye, and not me. Usually she handles it quite well, but we did have an incident a few weeks ago which made her hide her face into me. When we talked about it later, she burst into tears, crying "I don't like it when everyone always talks about my eyebrow." This made her mother burst into tears :o( Oh how I would give anything to have my daughter walk out of the door and not have a single person ask her what's wrong with her eye/eyebrow.

But this incident was definitely a teaching moment, and so we had a good chat as to how to handle it when someone is obnoxious. She recognized that it is not nice to treat someone like that, and by how she felt, she now knows not to ever point or be rude to someone else. We also talked about how we should react to people who do this to her.

It didn't take long before we were back out in public and someone asked her about her eye. She shrugged and said, "It's just my birthmark.". She told me later that she didn't mind that the man asked her.

Keziah still has no problem with her freckle and actually quite likes it. It's just the attention it receives, she does not like. She does not like being the center of attention in the best of times.

We are so proud of her. We see often that the Lord has blessed her with a maturity that has her handle herself well in situations that would make me wring someone's neck.

We go back to see Dr. Zuker on June 12th for a follow up, as well as a plan of "what's next" and "when". I will update after that appointment.

The sun is shining more - yay - which means a hat is a fixture on this girl's head to protect her freckle and scars from the sun.

 Thanks for reading and enjoy the month of May!!