You can listen HERE.
I had the honor of being able to share Abe's story and a little about what went on in Iowa during the last legislative session.
You can listen HERE.
Dear US Senator Joni Ernst,
I was in the Drake Diner in Des Moines, Iowa the day you came to celebrate your win for the US Senate. I was sitting in the booth right by the front door. I had my small son who was two at the time and you had a large group in the back who cheered loudly and clapped for you as you came in.
You didn't notice that when your group of supporters began screaming for you, that my son slammed his head twice on the edge of table. The noise your group suddenly made (without regard to any of the other patrons) both terrified and overwhelmed him. The metal edging on those old vintage-style tables there really did a number on my son's forehead and he had a lump and a bruise for over a week. Two of your supporters noticed my son in hysterics as they walked by. Instead of smiling or offering some form of apology for the uproar, they sneered at us as I was trying to calm him down. I'm sure they saw the huge welt on his forehead and thought of me as a terrible mother. They were both still smoking outside when we left.
You didn’t acknowledge my son that day in the Diner and you aren’t acknowledging him now. So, it didn’t surprise me when you accidentally sent me the response to "crude oil" instead of "cannabis oil" to my e-mail. It’s those little attention-to-details things one has to do when someone truly cares about their people. I was pleased to see that I received an additional e-mail today with your response to "cannabis oil" instead of "crude oil" today.
The bare-boned truth here is you didn't take the time to actually hear what my real concerns were at all. My name was just pasted into a bulk e-mail (just like the "crude oil" response) and sent on out, without any real regard to what is happening to people in the Unites States of America, let alone your home state, Iowa. You yourself claimed in your campaign that you are a “normal, everyday” Iowan. If that were true, you would listen to the concerns of the mothers and families in this state who are reaching out to you for help in Iowa and in Congress.
I was fully aware that you supported the extremely limited bill in 2014, as an Iowa Senator. That is precisely why I reached out to you. You spent a great deal of your letter explaining to me what CBD is. Clearly, I already know what Cannabis Oil is used for or I wouldn't have been reaching out to you for help in the first place. My son has Epilepsy, a Genetic Brain Disorder, a Rare Chromosome Disorder and a long list of other diagnoses you have never heard of and thanks to CBD, my son is 125 days seizure free today!
I reached out to you because I wanted you to know that the "narrow limited use of a marijuana plant" is not working for my particular situation or hundreds of other families. I wanted you to know that children are suffering in your state. Parents are forced to walk a supposed "grey area" in the law and fear that their children will be removed from the home because they are doing what is right. I reached out to you because our own Neurologist (who we'd seen since my son was 10 months old) told us we should to try CBD and was unable to help us. I reached out to you because our state capitol's only Children's Hospital will not back its use without FDA Approval and our Neurologist had to follow protocol. I reached out because that same Hospital actively lobbies against important bills that could help children like mine at the State House. I reached out to you because suffering children and adults need you to stand up and do what is right in Congress to fix things for families like mine.
Never once in my conversation with your Regional Director did I request "the opening of medical marijuana dispensaries and the use of medical marijuana in general" as you mentioned in your letter, although I feel that is the obvious thing to do when you pass a law for things like CBD but don't allow access, like we have here in Iowa.
What I did request was help for my son and for the children in Iowa to have a chance at using a natural, plant based medicine as opposed to the Pharmaceuticals that just keep piling on with every serious seizure. Pharmaceutical Drugs were the worst thing that happened to my son, thus far in his life. Not only did they create new and worsening types of seizures - they took away his ability to walk (for which he worked for years to be able to do) and they took away his words after a serious fit of side effects from the Klonopin. (We later found out he was on too much but that took us going to a World Reknown Hospital hundreds of miles away from home and five months waiting on referrals.)The Keppra he was put him on made him have serious behavioral issues where he did not stop screaming or crying for nearly 14 days straight before our Neurologist pulled him right back off of it.
You claimed in your letter that the "concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing" but that simply is not true. The research is there and in fact, the United States Patent 6,630,507 now held by the US Department of Health states cannabinoids are "substantially free of psychoactive or psychotoxic effects, are substantially non-toxic even at very high doses, and have good tissue penetration, for example crossing the blood brain barrier." In order to hold a patent, did the Government not do enough research themselves? Cited references within the US Patent go back to 1942 so clearly it is not a new concept at all.
My son is not a sympathetic story. My son is a little boy who deserves the same quality of life that all of six of your grandchildren deserve. He deserves the right to think and laugh and smile and be awake and alive instead of being drugged into a stupor on Pharmaceutical drugs whose side effects can be worse and more damaging than the seizures themselves.
If you truly understood how patients, including children like my son are struggling, you would not hesitate to stand up and do what is right in Congress. You have the power to help suffering Iowans and Americans alike.
Dear Mrs. Miller,
Thank you for taking the time to contact me about the use of marijuana for medical purposes. It is important for me to hear from folks in Iowa on policy matters such as this. Additionally, thank you for sharing your personal story about your son and your family.
Currently, some form of marijuana usage is now legal in 38 states, including Iowa. As you know, the medical use of cannabis oil extract was legalized in our state in 2014, and I supported this measure during my time as an Iowa State Senator. Cannabis oil is derived from marijuana plants and is typically used to treat epilepsy. It has high concentrations of cannabidiol (CBD), a non-psychoactive antioxidant, and low concentrations of tetrahydrocannabinol (THC), the mind-altering compound found in marijuana. Though I supported this narrow, limited use of a marijuana plant extract, I have concerns about the opening of medical marijuana dispensaries and the use of medical marijuana in general.
The concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing. Before being introduced to the market, commercially available pharmaceuticals are subject to years of research and testing in order to prove their efficacy and safety. As you may know, marijuana is classified as a Schedule I substance, a label assigned by the Drug Enforcement Administration (DEA) to drugs which it deems have high abuse potential and no medicinal value. Many contend that this classification makes it more difficult for scientists and researchers to study marijuana.
I understand that a number of patients, including children like your son, are struggling with chronic diseases and use marijuana for treatment. More research needs to be done on the medical use of marijuana and I would also like to see more evidence that the substance can be distributed in a safe, responsible, and controlled manner.
Please know that I will continue to keep your views in mind as Congress continues to work on this issue. Feel free to contact my office with any further information, as I always enjoy hearing from Iowans.
Joni K. Ernst
United States Senator
Things are hard when it comes to what's right and what is wrong. I have tried my best to do what is right when it comes to the extent of the law. I have followed every avenue that was presented. I have asked nicely on more than one occasion for the help that my son needs and for a medicine that can help him. I have been advised to get help from law enforcement and I have been advised against it. I have been told to "do it anyway" from my own lawmakers. I have also been told "I don't know" when asked about the specifics of a law that they themselves have made.
I am beyond frustrated. And in fighting a fight for a medicine that has a stigma so far removed from what is going on in our generation - it is most unfair. If someone had told me when I had my son that I would be fighting for legal access to CBD I would have asked them "CB What?". The truth is - I had no idea I would have to fight so hard just to give my son good care.
If you've been reading this blog - you know our struggles. You know how hard I've had to fight for answers for my son. We have been through the ringer with the medical field way before we were even told our son has Epilepsy.
We have been told contradicting information and advice since Day 1. I still often linger on the "what-ifs" of the day he was born and if this could have been prevented for the most part. Obviously, I can't prevent a Chromosome Disorder or a fused kidney or a mass in his brain but I often wonder if his Hypotonia, Global Delays and Speech Issues have more to do with his lack of 02 at Birth than anything else. But.. I can do nothing about that. It is what it is.
What I can do is fight. I can educate. I can share our story. I can try to hold back tears when I am showing a Senator a video of my son having a fit on Keppra because he can barely handle seeing my son like that. I can try to hold back an Ugly Cry as I share with the President of the Iowa's Senate's Assistant that we STILL can't get help. I can hold back my rage when yet another Physician is more worried about getting sued and "not having a legal leg to stand on".
My son deserves a quality of life that doesn't include eyeball lesions, painful rashes, more severe seizures and slower thinking. If a person looks (actually LOOKS) at the things the FDA Approves (and often rescinds) - they make think twice about giving medicines to a child that have the possibility of life-long damaging side effects over a plant. A PLANT.
It's not right and it's not fair. But I'm fighting as always. Always for Abe.
Yesterday, I posted my third and final attempt at contacting Unity Point/Blank Children's via their VP and CEO. Although, I never did get an official response from they themselves, the President and COO at Blank Children's Hospital contacted me to address my concerns.
I have to be cordial in saying that he was a polite man but he advised me he was going to tell me what I didn't want to hear. I already knew that.... but I wanted to be heard. Not ignored. This is a child we are talking about.
The facts are: Unity Point/Blank Children's opposes the CBD Bill here in Iowa and will not consider backing it until the FDA Approves it.
I get it. It's big business and big pharma and there is nothing that I can do about it to change anyone's mind.
It's just sad that parents and physicians aren't able to make choices for their children and their patients without policies blocking their way. My son has suffered enough. He has been through three years of absolute hell in dealing with the medical world from the very day he was born.
It doesn't matter that they don't know how to treat his Rare Chromosome Disorder. It doesn't matter that they didn't know how to treat him when we come into the ER with collapsing spells. It doesn't matter that they put him through unneccesary IVs and starve him for hours and hours for tests that never happened due to the fact that no one wanted to call our neurologist to find out he'd just had an MRI.
It doesn't matter that he's only 3 and that we have to travel out of town and out-of-state to get the help that we need. It doesn't matter that his own Neurologist who has been seeing him since he was 10 months old won't sign an card to ensure that we won't go to jail for giving him a medicine that comes from a plant.
It doesn't matter that he's got a massive kidney and that a good portion of anti-convulsant medications are out due to the fact that they are metabolized in the kindeys. It doesn't matter that the only two medications that we have been advised are our last options can make him go backwards and lose the skills that he has worked so hard to gain.
It doesn't matter that he's had to be in multiple therapies since before he could crawl - just so he was able to sit up. It doesn't matter that at 3 he still cannot even say Mama or that he can't feed himself because his pincer grasp is just now starting to work.
It doesn't matter that the mass in his brain makes him feel pressure in his head so badly he'll slam his head into his crib for hours. It doesn't matter that the pressure from the mass in his neck that has been ignored for months has made him start hitting himself in the head and ear.
None of what my son has gone through or will go through matters to them. They will not back the CBD Bill until the FDA Approves it. Which could take decades. THESE KIDS DON'T HAVE YEARS TO WAIT.
But you know what? It doesn't matter that my kid doesn't matter to them.
It doesn't matter that they told me No. It doesn't matter that our Neurologist doesn't have the guts to do what is right. It doesn't matter that our own Physician and our own Politicians have even advised us to do it anyway.
None of that matters.
He is my son. HE MATTERS. I am going to fight to get him access to a medicine that could literally change his world. THAT IS WHAT MATTERS. KIDS MATTER. LIVES MATTER.
I have written to you (Bill Leaver and Kevin Vermeer) several times since June with no response. Julia is listed as a contact for media on the Unity Point website and I have not received a response from her either. I called and left a message for Mr. Vermeer's assistant last week and did not receive a response that way either. Incase you didn't receive them before, you can find them by scrolling past this email to the bottom as they are also included in this email.
I have shared my story with the Des Moines Register, Associated Press, the President of the Iowa Senate as well as with all of the Republican House and Senate Members. Senator Grassley's office admitted that they were aware of your hospital policy not allowing your physicians to sign off on the CBD cards, which I found shocking. I also have contacts at most of the major news outlets for television as well. I am sure Iowans would be interested in hearing that the non-profit and publicly funded hospital who touts in their commercials about how much they care for sick kids are blocking an already extremely limited bill that parents fought so hard to get.
Perhaps my last emails were too lengthy but it is difficult to share my son's story without it. I am not going to write why I think CBD is a good choice for my child. Your hospital has made it clear with its policy that you don't trust your own doctors let alone the parents of your own patients to decide what is best for their children.
So I will just share with you some facts about my child's healthcare journey. My son just turned 3 this month. In those three years he has had to fight so hard to do things that other kids and families take for granted. Two years ago, I was informed that he has a mass growing in his brain and that the mass would most likely cause seizures and that it would require surgical intervention at some point in his life.
The mass is circled in yellow below. Due to that mass, my son has to go through routine MRIs which are dangerous in so many ways to a young body. Yet, your hospital won't let us have legal access to a medicine which is anti-tumoural and anti-seizure. Instead - you would rather us put him through MRIs and multiple sedations to make sure it isn't growing. So every six to nine months we have to say goodbye to our son and pray that he wakes up from sedation and that he doesn't stop breathing during the procedure again.
In addition to the mass in his brain he also suffers a Rare Chromosome Disorder called 7q31.31 which deleted the KCND2 gene, which also pre-disposes him to Epilepsy. He is just ONE of THIRTY-FIVE people in the world who are known to have this.
We learned all of this before he turned 18 months old. However, on top of that he was also diagnosed with Hypotonia (he was unable to walk until he was 30 months old), Sensory Processing Disorder, Microganthia and more. His diagnosis list doesn't stop there but due to the fact that you have zero care in the world for what my son is going through or what my family is going through. After all, your paid Lobbyist/Employee/Manager of Child Protection at your hospital stated publicly that “We don’t know if families use it for their children that maybe four years from now they could contract cancer or something like that.”
We have seen three Neurologists and five Neurosurgeons. We have been to two Nephrologists (one who incorrectly diagnosed my son at YOUR hospital - forcing us to go to Iowa City), we have been to the CDD to meet OTs, PTs, STs, Developmental Specialists, we have put him through FOUR EEGs and FOUR MRIs and we have seen countless other specialists like Endocrinology, Orthopaedic Surgeons and Cranio-Facial Surgeons. We have been to the MN Epilepsy Group and are heading to Mayo for their diagnostic clinic in the upcoming months as well due to the fact that no one in Iowa can put the pieces together for us.
I am writing you because I think that if you even took one look at these kids and the lives that they live you would understand that they need help NOW. My son needs reprieve.
His Generalized Seizures and Abnormal Brain activity make is so that he never gets a break. Can you imagine getting shocked all day, every day and even while you are sleeping? Could you imagine how the lack of sleep would make a person feel? My son has never had a full good day. My son has never had a full night's sleep. My son has never had a summer or a spring or a winter without countless appointments and that doesn't even count his therapies. Can you imagine working for months and even years on learning words only to have them taken away by a seizure? Can you imagine how hard it is as a parent not to hear your child call you Mama?
It is heart breaking to try to share his story with people who are so against a medicine that may have the chance of changing his entire quality of life. A medicine that has been proven in other countries and other states to be effective on Epilepsy. However, my son doesn't just have Epilepsy. He also has that mass in his brain that I shared with you.
If that were your child - wouldn't you rather take the slight risk of giving him a medicine that could have the possibility of not only taking away his seizures but also shrinking that mass in his brain? A mass that all of our specialists are waiting to grow. A mass that has doubled in size since 2013. A mass that can cause life threatening and irreversible neurological damage.
If that were your son's brain - wouldn't you want to take the risk of giving him a plant in lieu of waiting for the most invasive brain surgery there is for your toddler?
If that were your son - wouldn't you appreciate the Executives at your own child's hospital taking the time to respond to your concerns?
Please sirs. Change your policy on CBD. Please help my son.
I haven't had the courage to post here very often because when I try to tell this story over (and over) again I just get angry. After Abe had his ride to the Children's Hospital in October in an ambulance I thought that maybe we'd have answers. We went through a 44 hour VEEG and then a 22 hour Ambulatory EEG and had no events or episodes that we noted. I went all that time and all of those weeks thinking that they had just disproved seizures. WEEKS went by and we heard no news. None. At my follow-up appointment, I was told that his EEG was "abnormal" but I needed to re-schedule the next appointment with my husband so he could go over the EEGs with us. So we did. It was then that he told us that he has "Generalized Seizure Disorder" and that his EEG was "very very abnormal". He described it as "his brain is firing from all over the place all of the time". Then he gave us a list of medications in which we should look into and chose which anti-seizure med we needed to choose. Luckily, I have a great relationship with our Pharmacist who helped us pick based on his extensive knowledge of all that is Abe.
We chose Clonazepam over the rest in hopes that it would help is serious lack of sleep, his agitated mood in addition to helping his seizures. December was THE BEST MONTH we have ever had. All of our friends noticed just from his pictures that he was so happy and he felt sooooo good. He had a shine in his eyes. He smiled. He played with toys. He walked unassisted for the first time in his life at 30 months. He fed himself with a fork for the first time all right before Christmas. Everyone said "he seems like such a different little boy".
But then it changed. So we upped his Meds in January, February and March. For most of the month of March I called begging for help to our Neurologist's Office. We were trying to set up peer-to-peer conversation between our local doctor and the Skull Base Surgeon who had been following Abe since he was 10 months old. Our Neurologist had admitted that he needed outside help. I even wrote a research paper for him on the 7q31.31 deletion and our Geneticists findings as well as the info I had from the only 4 other families in the country who have similar but not the same deletion but I never got a response regarding my findings at all which basically proved that the 7q31.31 had no other patients who suffered from seizures.
After our Neuro and the Skull Based Surgeon's first peer-to-peer, we were told their concerns were things were structurally changing within the brain. We needed an "urgent MRI" that got pushed back a week. I bawled my eyes out. Then we got the MRI and it showed that in addition to his "11+mm prominent pineal cystic lesion" he now has a new 2cm occipital cyst as well and there are changes in his hippocampus and his temporal horns. It took another 10 days for these results to be discussed with the Skull Base Surgeon (who wanted to give us an even later date but our doctor refused).
Just last weekend, he had a seizure with his SCL on that Friday, by Saturday he was crawling and by Sunday he could only take a couple of steps before he collapsed and had to crawl the rest of the way. I called the "on-call" Neuro who asked me "What do you want to do?" In some occasions, it's great to have a doctor ask you that. However, that occasion is NOT when your toddler is having Neurological Issues and no one ever even really discussed with you what that REALLY MEANS or what to look for... that is not what you want to hear.
So, she advised us to give him an extra dose of meds and bring him in if it still continued. And it did. So we went to the ER. We were admitted and told he'd need another MRI and no one would even call to discuss with our Neurologist. So they prepped him for said MRI and full sedation (with breathing tube, etc) by giving him an IV (which is horrific for him, in so so many ways) and starving him. By 7pm that night he was a WRECK. They still didn't have a sedation team to do the MRI so they let him eat and then we had to withhold food again until his MRI that was to be at 8 am.
Eight o'clock in the morning came by quickly and after waiting several hours more and with Abe having a nervous breakdown, the MRI was canceled and my son was able to eat. By 2pm that day, our Neurologist told us the Skull Base Surgeon still said he was not a surgical candidate for the pineal cyst and had no other advice. No word about the Seizures or the changes in his hippocampus or temporal horns. No mention of the new occipital cyst. No explanation. No nothing. We were told that they didn't know how to help us and that we needed to go somewhere else.
Having your Neurologist tell you they don't know how to help your child is overwhelming. I'm NOT angry with him for that at all. I feel lucky that I at least have a doctor who is honest with me and WANTS to help my son get to someone who can help. It's an incredibly scary journey when the specialists need to point you in another direction.
I have been unable to update this blog in some time. A lot has happened in my family's life since my last post. In November my son was diagnosed with a form of Epilepsy and was put onto anti seizure meds in December. That adjustment in itself has been a roller coaster.
We also moved into a new home, in a new town about an hour away with my Mom. We now live in a multi-generational home and it has been such a great burden off our backs to have some help!
Abe however continues to struggle. The first month on his meds seems like a godsend but now just 90 days later we are back to no sleeping, absence seizures and behavioral issues that suggest that something is really hurting or bothering him.
We even had to page our Neurologist on a beautiful Saturday afternoon to ask for advice on how to best help him and him being the wonderful man he is - took our phone call when he was at home with his own family. So for now, we have upped his medicine to a stronger dose as the bloodwork revealed it was still sub therapeutic and he had some low areas on some tests as well including his ATP and his red blood cells. We go back next week to retest the blood. I'm praying that the blood work is just a matter of a nutrition issue with his food since he is such a picky eater due to his SPD but we are finally starting Feeding Therapy this week as well! I couldn't be more excited about that. It's been a very long wait to get in.
At this very moment - we are waiting to hear back from our Neurologist as we finally had the ability to connect him with Dr. Shahinian at the Skull Base Institute in Los Angeles. Although he is unable to do Pediatric Surgeries at his current hospital, I feel that at this point he is the best point of reference for our Neurologist and for my son to get the care he needs since he has been following him since 2013. Truth be told - thinking of my son having to have brain surgery is absolutely terrifying and I would love for that to be a choice that he makes for himself when the time comes. I am unsure if that is going to be an option for him at all but our Neurologist feels that we NEED A PLAN in case something emergent arose and we needed help.
A few other options have opened up for second opinions but right now - he has so much going on the mere thought of starting over with a new Neurosurgeon is overwhelming but I do know a few moms submitting their child's files to Barrow Neurological Institute so I'm excited to see what assistance they may be to help the children and toddlers suffering from these lesions.
Abram just woke up from his not-napping at all really... so I have to run... but wanted to update what was going on. :)
It has officially been two years since my son came into the world. It blows my mind how fast the years went yet how long the days have felt this entire time. Abram has come so far since his last birthday. Last July he was unable to sit, hold his own bottle or bear any weight on his legs at all. As of his second birthday, he can walk with the assistance of a walker, hold his own sippy cup and loves to cruise around the house via the walls and furniture. The older he gets, the further behind he gets developmentally, so we are still going strong with therapies and he is now starting speech therapy as well.
It is hard to realize that your child will have to work so much harder for all the things other parents take for granted. This doesn't mean that I don't want to celebrate in the milestones of my friend's children because I DO. I always am in awe and excited for the kiddos who were born much later than Abe who are already walkin' and talkin'. I just remind myself that I got lucky because I got to have my little baby be a baby a little while longer than everyone else. (Although, the damaged ligaments in my wrists tell my body otherwise: carrying a 26 pound toddler everywhere is hard work and not easy on the bones. "Getting old is the pits!" my Grandpa used to say. Now I get it.)
As most people do, I have been doing a lot of reflecting over the last two years. Abram's Birthday will probably always bring up a host of emotions. I can only hope that someday the trauma of his birth and all that ensued afterward won't sting as much. I often still wonder if the events of his birth and the fallacies of the Hospital in the days following his entry into the world are the cause of his issues but I can't allow myself to linger in those thoughts for long.
I will always grieve not remembering holding him for the first time because I was so drugged up after an emergency C-Section that went awry. I will always have the guilt of "what-if" the nurses had attended to his oxygen levels sooner. I will always wonder deep down inside if there was something that I could have done to prevent these issues my son and our lives have had to endure.
Not many people have to endure that kind of grief. It is a deep, hollow and echoing grief that sneaks up and slaps you across the face with it's utter bleakness. It is a gut wrenching sadness having a child who can't tell you what hurts because they are unable to speak. It is a never ending heartache not being able to do the one thing a Mama is supposed to do for her child..... the ability to make things better. To not know what is hurting him or what he needs is horrific. To NOT KNOW the name of the thing that has taken over your whole life hurts so bad that sometimes it makes my throat close up in order to stop the tears from flowing. (Like right now as I am writing this.)
When people ask what is "wrong" with my son, it. Is difficult to explain because it is not just one thing that affects him. Each little diagnoses that my son has includes a huge list of symptoms that affect his daily life in numerous ways and it is impossible for anyone who isn't living it to even get. That is not to say that other mamas don't have it rough or have a bad day but I think it's hard for people to fathom just what we go through on a daily basis.
Unless you've sat on the other side of a two-way mirror to watch your child scream-cry for over a year in order to do something as simple as bearing weight on his legs... you have no idea. Unless you have a child with serious sensory issues there is no way you can get it how much it impacts my son's everything from clothes and eating to playing, socializing and playing. Unless your child has Hypotonia you have no idea how long it takes for my kiddo to reach a milestone. Unless your child has a mass in their brain- there is no way you can get it. (Just how there is no way I can get how hard it is to have an even more medically fragile child. Until you've lived it - you just cannot know.)
So, when I say "You are so lucky" to parents of typical children - I mean it. Just like I am so lucky that Abram doesn't have even worse symptoms or diagnoses but I always speak with those parents enduring more than I can imagine - I always speak to them with integrity and respect. So please, if you know someone going through something similar just be kind.
Don't make offers to help - Do something. Say something. Be there. I see this a lot in other blogs as well so I know I am not alone in this feeling. Send a card. Send a text. Leave a book for them to read on their doorstep or a silly toy. These are things my friends have done for me. You have no idea how much it cheers someone up to find a dinosaur bath toy, an old silver bowl(who did that btw?) or a Mac Tonight wind-up can do for the soul.
NEVER tell a parent with a special needs kid that you have it just as hard if you have a healthy child. I have friends with both typical and special-needs kiddos and they echo this sentiment as well. Parenthood is hard enough for everyone. However, going through a non-stop health crisis since the day your child is born is nothing to scoff at or belittle.
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.
As usual, a lot to report since my last entry. Abram is finally pulling up to stand and "cruising" along furniture! It was such a huge deal to us and it made me cry to see how proud he was to be doing that!! The cat however, seems a bit disgusted that he's got a broader reach!
His Physical Therapist also got him to walk across our (yes, tiny) living room but the fact that she got him to 1) touch the rubbery handles and 2) "walk" using his posture trainer (picture a backward adult/elderly walker) in shiny gold! He screamed the entire time but he did it with the help Physical Therapy twice a week since last summer! I'd like to honestly have him "walk" into that Orthopaedic Surgeon's office and have him kick the guy in the shins for telling us that we could do PT until we were blue in the face and it wouldn't do a thing! We showed him! Go, Abe, Go!!
I'd also like to send a HUGE THANK YOU to the Rock Island District of the Army Corps of Engineers - where my father retired from and whose former co-workers were kind enough to send us a great donation that enabled us to pay for Abram's new glasses (coming soon!) and new shoes! Thank you so much for your kindness and generosity and for thinking of my son! It was so kind of you!
I'd also like to say thank you to the people who sent my family kind words after my Grandfather's passing. Lyle Fluckey was a great man and he will be missed by many. I'm just so glad that I got to give him a proper goodbye and he got to see Abram stand before he left this world! Such a great honor to have the chance to tell someone you love them one last time!
The Opthamalogist that we switched to turned out to be a great decision. Abram's old glasses had a prescription that was incorrect (too strong) and they check him and he does not have FEVR, which was a relief. His right eye is turning in but they feel that these glasses will help correct it and they gave us drops to put into his eyes so that they dilate enough to blur his vision so that he'll WANT to wear his glasses. I'm hoping that method works! With his Sensory issues, he tends to be very head/face sensitive and can't stand anything on his head! Drops however, are a much better suggestion that the suggestion that we got from our old Doctor who told us to duct tape magazines around his arms to restrict his movement! Um, no!!!
In addition - Abram's soft spot still has not closed up and is considered to be an "abnormal fontanelle" so on the recommendation of our PT we are going to see a cranio facial doctor next week to see if they can give us any suggestions as to why it isn't closed, if it ever will close and to get a second opinion as to whether or not putting a helmet on him to protect him would be a good idea as suggested by our Neurologist.
I think that about sums that stuff up!! Lots of appointments coming up/waiting to get scheduled and as per usual, I will update here when I can! Thanks for reading and thanks for caring. We love you!
Hi! I'm Erin. I am a wife, mother, advocate for UBE2a Deficiency Syndrome and proponent for medical cannabis.