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.
There is nothing that I can stress more when you are dealing with a sick or special needs child than the fact that if you feel that you have gotten terrible care or that the individual you met with did not answer all your questions - PLEASE get a Second Opinion.
Until I had a son that has had medical issues since day one, I had no idea how different and often times completely opposing views doctors and nurses would have as to what is considered appropriate care for my child. If you are new to the blog you might be shocked to hear we had an Orthopaedic Surgeon tell us that our son may not walk, a Neurologist who told us he was "fine" and a Pediatrician who missed a lot of signs of a serious issue for the first ten months of his life!
I am lucky to have had a nurse friend advise me on what to do when no one else was listening. So, if you are reading this because you have a sick child and no one listens... find someone who will. Since my son was born we have seen Nephrologists, Orthopaedic Surgeons, Neurosurgeons, Neurologists, Ophthalmologists, Cardiologists, a handful of Pediatricians, Orthotists, Physical Therapists, Occupational Therapists, Dieticians, and almost any other kind of "ist" there is out there. Once I finally got his first Pediatrician to admit that something was off with my child, there hasn't been a day that I haven't fought like hell to do everything that I can for him.
After my last post, we decided to travel to Iowa City to see another Nephrologist. She concurred that he does have abnormal kidneys but that the scans weren't exactly the best. It appeared that they are almost on top of one another, so she doesn't believe them to be horseshoe kidneys per se but said that there was flesh where there shouldn't be any and that they definitely aren't where they are supposed to be. So, she recommended that he get a nuclear test (Mag 3) to check his kidney function and to make sure that everything is working properly. They were going to try to schedule it the same day as his next MRI (in three weeks, eep!), so he only has to be sedated the one time. Sedating your child is risky and scary but sometimes it is a necessary evil.
In addition to the Nephrologist, we also managed to get the Sleep Study conducted over mother's day weekend. We took our own supplies and showed the sweet nurse how we prevented him from ripping off the sensors during his three day EEG. They managed to get the information they needed from the very little time that he slept (he woke every 60 minutes the entire night) but I am hoping that it is enough to show the Pulmonologist what is going on in Abram's sleep. We have already ruled out Aspiration but are still waiting to hear if he has sleep apnea or RLS before chalking his sleep issues 100% as an affect of his chromosomal disorder and the mass on his pineal gland.
The Geneticist also called back to report that Abram's test for Noonan Syndrome came back as "normal" but that the test only catches 60-70% of the cases so a normal result doesn't necessarily rule out Noonan Syndrome but it makes it less likely. That was a $4,700 test for a maybe? So, now we are still waiting on the results of my husbands blood work to see if he is a carrier of the Chromosome 7 Deletion. If he isn't, then they will be testing for Fragile X Syndrome.
We also have had a follow-up with our Neurologist who upon walking into our appointment was convinced that he would start medication for Abram's seizure-like activity but after seeing him and how much he'd improved socially and physically since our last meeting changed his mind entirely! That was a big relief. The less medicine the better because most anti-seizure medications make kiddos very sedate and his entire personality could change.
Next month is another huge month with appointments and follow-ups but I am hoping that July will bring fewer doctors appointments and more fun! This is officially Abram's third summer and I plan to make it the first memorable one for him. He deserves to be a kid. If the Fragile X comes back as "normal" too, I think we'll be taking a break from the hunt for a diagnosis or a name of a syndrome for our son's affliction. Life is too short to spend it in a waiting room!
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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