As Abram's image keeps on going viral I try hard not to look at the comments section. Luckily, 98% of the comments on all of the posts I have seen have been positive but it's always that 2% of people who have something hateful to say that gets under my skin the most.
Today, the "using my kid" thing got under my skin. I was actually just interviewed on a local radio station (Lazer 103.3) due to these very instances explaining that sometimes there is a story behind the internet memes that are spread around the internet like wildfire. Everyone is so quick to judge but don't want to take the time to check their facts or read about anything that doesn't really affect them. Spreading hate is so much easier than learning a thing or two.
Our family was going through (and still is going through) something VERY REAL and very scary when his images first went viral. Count yourself lucky if the best thing you have to do all day is bash another mom for her parenting. I spend my days going to a host of therapies, driving hundreds of miles to see specialists and hoping that someday we will have a name for the thing that has impacted our child's EVERYTHING.
Taking a harmless and silly set of photos was a spur of the moment thing that we did to *gasp* entertain ourselves and like most kids, our son loves having his picture taken and posing for the camera. I also happen to be a Graphic Designer so we took our favorite pictures, made a montage of it and shared it with our friends - who actually care. I had no clue that some jerk would take it, claim it as their own and spread it around the internet so I could have slews of people attacking me and claiming everything from abuse (physical and emotional) to people saying they hope my son grows up to kill me to insulting my home (which you can see very little of in the photo).
People assume that I meant to have my son's image go viral which is furthest from the truth. If you know me, you know that I owned a business before I closed my doors and I did a lot of charity for babies and animals. I closed my doors to my shop to become a mom and I took great pleasure in sharing my son's better moments on our Facebook Page. I had no idea that within 24 hours that someone would steal that image and that a year later his image would still be going viral and that there would still be those judgmental folks out there who have nothing better to do than be hateful and spread negativity.
If I could go back and undo posting that image I would still do the same thing. Not because I love reading how people think my son should grow up to kill me or to know that Bob V from Washington doesn't approve. I would post those images again because I have met so many other mothers going through the same thing! I have helped other moms. Other moms have reached out because of this one photo and my persistence in trying to tell people that there IS a story behind every picture. I can't do anything about my son's image being stolen but I can try to turn something negative into a positive by educating people about children with special needs, childhood brain tumors, rare chromosome disorders and a host of other subjects.
It is an unfortunate fact that the people that feel inclined to be hateful most likely won't even take the time to click on a link to read about such things because pecking away at the keyboard being judgmental and hateful is so much easier than being a good person who is open to discussion, willing to learn and being open-minded.
Luckily, I have a host of therapists and specialists who tell me that I am doing a great job and believe me, they see a lot of people that don't. My son's improvement is a testament to that, considering one year ago he couldn't even sit up on his own or hold his own bottle and right now he can walk with the help of a posture trainer and SMOs! Abram is a fighter and has worked hard and cried through nearly all of his physical therapy but he is turning into such a bright little boy with a personality to match. I have heard good reports from his Neurologist, Physical Therapists and Occupational therapists just this week.
So I will end it with this:
Be kind. Learn something. Read More. If you have healthy children, be grateful not hateful.
It seems like a lot has happened since my last post. Abram had his high contrast MRI (for which we are still waiting on the results), he got his first pair of foot braces (AKA as "AFOs) and his first pair of glasses came in. It seemed like a lot for the little kiddo to take in so we're weaning him onto both slowly and never at the same time!
This morning, I took him outside for the first time with his new glasses and instead of repeatedly trying to rip said glasses off of his face he actually took the world in with amazement and it involved a lot of crazy cackling!
I think it overwhelmed him though and he soon got grumpy, did a crazy cry I have never heard before and he is currently down for a nap!
It was just so cool to see that the glasses made such an improvement in the way he can see the world. It is so obvious by the way he is in awe that it truly did make a difference and I am hoping that maybe with the improvement in his vision that perhaps his fine motor skills will improve and hopefully it will help with his sensory issues too! This poor kiddo is terrified of anything squishy, slimy or rubbery and can't even bring himself to touch a banana although he loves to eat them. Ironically, a taste of a chocolate chip cook made him drool it all out in disgust and gag so that was pretty weird considering I love all things sweet and tasty and my boy loves his veggies - which is AWESOME! He wouldn't even eat his cupcake on his Birthday!
Anyhow, the glasses have amazed me and I can't wait for when he gets used to them enough that he's not constantly trying to tear them off between moments of having his mind blown about how awesome things are now that he can actually see them! I am so glad that the Opthamalogist decided to put him into glasses earlier than we had planned! You can see a video of his first time outside with his glasses by clicking here!
In addition to his new world-view, his AFO's have also been a pretty huge eye-opener for me! As most of you know, Abram also has hypotonia as well which has resulted in extremely low muscle tone in his legs and arms. He receives Physical Therapy and Occupational Therapy for that but it really seems like these little foot braces will really be making a huge difference in his mobility. When we went to go pick them up and the Orthotic Doctor put Abram in his AFOs and his sweet red and black New Balance sneakers he asked for me to have Abram stand, to which I replied that he can't bear weight on his legs. He asked "Can't or won't" and I tried to explain to him how he never has, how he always bends in half and cries as if it hurts him. However, as I was saying this, I felt Abram's feet hit the ground for the first time and his knees didn't buckle and he did not bend in half! Then, he actually bent at the knees and straightened his legs again as if finally feeling what the ground is supposed to feel like for the first time.... and all of the hair on my arms stood up at once and I had tears rolling down my cheeks! He collapsed in half immediately after but I felt my son feeling his own power for the first time and it was unbelievable.
I cannot wait to see where this child is going to be in the next few months. They don't think that he'll walk until he's about two (and that is okay)! It's just such a thrill to see him blossoming and getting that sense of self! This little boy blows my mind every single day.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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