Blog · May 26, 2014

A Grateful Heart

It occurred to me this past weekend how when I saw a single negative or hateful post anywhere-on Facebook, Twitter or the Web at large-how it would just ruin my day. I would get a pit in my stomach that was riddled with ugliness and I couldn’t shake it. Let’s face it, hate is ugly. There is no way around it.

il_570xN.522377732_1cogI try so hard, SO HARD to remain positive, thankful, grateful about the gifts in my life, no matter how hard life is every single day. I want and need to be positive because Nicky needs it from me. That’s why, on my Facebook page Sleeping Angel, I post positive, uplifting quotes every single day. Quotes about Hope, about remembering our Angels, positive quotes about the disabled and more. I wrote about Choosing Gratitude on a previous post a couple of years back, but I felt the need to update my thoughts a bit…

I wanted to give a few examples of the ungratefulness I came across recently to explain my thought process a bit. As many know, I make EB Awareness graphics in an effort to spread the word about EB, in my own little way. I rarely get comments on them, but it seems as if, lately, when I do, they tend to be negative. On a graphic about “SuperMoms”, the ONLY comment I got is “where is the post about dads”? On a graphic about parents going broke purchasing supplies denied by insurance companies, the ONLY comment I got was from an older patient saying “older patients go broke too, where is the graphic about that?”.  On a graphic about moving forward with a broken heart (from seeing children in pain), the ONLY comment I got was from an indignant older patient who was mad ‘EB patients are not broken!” What? It made no sense. Yet another graphic I recently posted, was about ‘EB are not words to be feared but a person to be loved’, the ONLY comment I got was from someone who was ‘bothered’ by that, that EB is not a person, yadda yadda yadda.

Did I get any ‘thank yous’ at all from any of these Debbie Downers? Of course not. How sad that instead of seeing the good in it, grateful that someone is spending their precious time trying to raise awareness, they must nit-pick, criticize and always thinking the worse. Because it’s one thing to ask… “I saw that you did one for SuperMoms, can you make one for SuperDads please?” I would be happy to oblige. Instead, they ridicule, they insult. Thanks! Let me be clear here and now. I do not stand for anything negative or hateful, anything like that gets deleted. I am not putting up with it. Period.

Does that mean I will stop making these graphics? No way. I took a little break recently because I spend most of my free time finishing up my book Butterfly Child, but I will start again later this year when my book is done.

Another group of ungrateful people are those that I came across-some of them my friends-who spend little time thinking about or being grateful of a FREE camp for EB kids their children have attended for many years. Not only the foundation paid for camp, they also paid for one parent’s plane trip and hotel to stay nearby. What other foundation offers free transportation and accommodation for the parent and a free camp for their EB children and their siblings? Nobody. I am telling you… Nobody.
Recently the foundation found out that they just did not have enough money to pay for the parent travel, they sent out the applications before they realized it-they could still accommodate the parent at a hotel nearby, one parent, up to 4 parents per room. I was fine with that. It changed nothing for us. We always drove to camp and I never came with anyone else, not my husband or anyone. Both Nicky and Connor are campers, and the camp even made accommodations for Nicky to be a “junior counselor” this year, since he’s too old to be a camper. I mean, these people to me are GOLD. I’ve seen them over and over again, year after year, go out of their way to make sure campers have an awesome time. I also think to bunk up with 3 other EB moms, it’s going to be so much fun. I am excited about it. I am so grateful for this camp for allowing Nicky one week of vacation with people that GET “EB” it’s beyond amazing. Other people, however, those that cannot leave their spouse or other kids behind for whatever reason, were mad. OK, you can be mad all you want, mad at the lack of donations, mad that you can’t afford to go, but mad at the foundation because they didn’t get enough donations? It’s not like when I am frustrated at Debra of America, who flatly refuses to bring the Conference to the West Coast. That is THEIR decision. How is the foundation that sponsor’s camp decision if they did not get enough donations?

It makes little to zero sense to me. Whatever.

relentless-political-fb-postsI came across this quote recently that spoke to me wholeheartedly: “In order to keep your heart & mind free from the poisons of this life you have to first prevent it from coming in through your eyes & ears.” I thought and thought about this quote, and I felt as if there HAD to be a way to HIDE from my feed any hateful post that comes through, especially those political hateful posts… like those people who, with the excuse of ‘venting’ must call our President all kinds of vile names. Even if the President had nothing to do with it. Such as if such-and-such state does not have whatever state program. That’s a state issue! ENOUGH! I’ve had enough of hiding people from my feed for their relentless hatefulness, I needed something to hide specific posts. So, I found this little program and it’s making my life so much easier… I can’t really explain it… SOCIAL FIXER Just go take a peek. You can filter posts by keywords etc, hiding this and that and does other things we wish FB would do automatically. I don’t know how I lived without it. I would get mad everyday. Now it’s as pleasant as a peach cobbler. Nice photos of friends and warm chat about TV shows. I am “in”!

Sometimes we must make a conscious effort to find the good, realize there is a silver lining in everything no matter how hard it is to find it, find the good, honestly believe there are always good intentions and circumstances behind everything we might find bad. Let’s look for the GOOD in everything and everyone. It’s the only thing that keeps me from locking myself into a cave. Looking for the positive…

Nicky in the end, is my ultimate teacher. It’s because of his lack of bitterness, lack of hate, lack of negative thoughts, that I am becoming a better person. I want to be grateful for everything I have, it may not be a whole lot, but what I have I absolutely LOVE. I love how my 10 year old comes over and gives me a kiss while I sleep each morning. I love how my husband gives me a hug, anywhere and anytime I need it. I love the sweet, loving disposition that Nicky has, despite the fact that he could have every reason to be mad at life. I certainly came across many adults with EB with less than pleasant dispositions, so I never, ever, take Nicky for granted.

Hate and Negativity be GONE! I am replacing you with a Grateful Heart. It’s good for my soul, my blood pressure, my life.

Love and Blessings,