Hello, Everyone!
It's been a very long time since I have written a post on here as life became even more hectic and I got lost in the hustle and bustle of life's everyday needs. If you're a personal friend and/or are acquainted with us, I began sharing most of our journey via my private facebook page. Sometimes "putting yourself out there" with brutal honesty and integrity makes people feel bold enough to invade your personal boundaries and space. On several different occasions, I have received harassing anonymous letters to my home address. It felt scary and very invasive. And then it made me feel like many people didn't deserve to have a window into Abe's world anymore. I have since realized that this is my life, I have to advocate and be his voice and I am no longer going to let faceless and nameless people hurt me into not sharing. Share Abram's journey is very important! Especially because he has UBE2A Deficiency Syndrome and without awareness, no one will ever know about it or even attempt to research for a treatment or cure. I'm not quite sure any of us have actually recovered from the dark long days and years of the pandemic. For most of us, those days are still a heavy cloud that hangs over us as many of the things we used to love and do still have not re-opened to the public as of yet. We especially miss the pool at ChildServe! In the 962 days that I have been absent from writing on my perch here, so much has happened. A pandemic. An amazing love story. And a major addition to Abe and I's family with my marriage to a man I met during said pandemic and who moved here last October to be with us. He has been a godsend. Unfortunately, in the last 962 days there has also been a pretty serious regression in all the things that Abram was previously able to do. After years of thinking the isolation of Covid caused his new and continuing issues with his feet, it turned out that Abram had a tethered spinal cord and a major growth spurt. This equated to him constantly toe walking, increasing pain, aggressions, self harming and so much more. It took 2 years of advocating, two physical therapists, three orthopedic surgeons and three children's hospitals in two states to figure this out. Abram underwent the laminectomy, where they cut away parts of his vertebrae in order to release his spinal cord and remove the adhesion that caused it. His legs unfortunately have been in toe-walking contracture for almost three years and there is permanent neurological damage done to his left leg. So, Abram will have to endure an even more invasive surgery to cut his heel cords, cast his feet how they should be and hope that he will be able to walk again with the help of leg bracing and inpatient rehab for days or weeks in the very near future. We actually speak to his orthopedic surgeon at Gillette tomorrow morning for next steps! Lots has happened since 2020 just as it has with everyone else. But believe me, the families of children with disabilities were hit the hardest. Especially those of us who have children with immunodeficiencies! I hope that 2023 finds you all well and as hopeful as ever. I promise to be more engaged moving forward. I miss writing. I miss sharing to people outside of our circle. My friend and I were even lamenting that we MISS all the days of therapies and having consistent routines but for Abe, those days are coming back hard and fast with water physical therapy and food therapy to try and see if we can change his diet preferences away from the universal chicken nugget. Much love friends! Not unlike all families, COVID-19 came in and reeked havoc on our lives but for a child like Abe - the upheaval in his daily routines and the inability to see his support staff did a real number on him. The last 9 weeks have been incredibly difficult as Abe struggles with not understanding why he can't go to school, why he can't go into a business to push shopping carts (literally his favorite thing ever) and why we can't go inside when we do get the opportunity to grab take-out. Not to mention, he didn't get to see his daddy, his super-cool bonus mom Lesli, his big-bro Carter and their sweet dog Lincoln (who he talks about endlessly) for a month while we worked hard to keep him safe. He's not been able to see his big sister and his brother-in-law-to-be either. Poor Abe's world got really, really small. With School and his private therapies - Abe has a team of well over TWENTY people to help him live his best life. As a parent of a child with complex needs (medically and educationally), it is beyond difficult for me to juggle working from home, care taking and attempting to be mom, therapist and teacher. When I let the school know that Abram was really struggling with understanding why his whole world changed and got turned upside down, they responded in a way that I did not expect! THEY MADE HIM VIDEOS. VIDEOS!!! If you know Abe - his treat is YouTube. He LOVES videos of people talking to him. After seeing him struggle for months on end in not understanding why he couldn't see his people - imagine my surprise when the school responded in the best possible way! They sent me these videos - just for Abe. It made me cry. To his school district - thank you so much for making these videos for him. It will be something I will remember and cherish forever. These little bits of kindness go so far with kids like Abram. It is much appreciated. Abe and I tried to do a Zoom meeting with his class. Something he was so happy to hear about yesterday that he cried when he learned he could see his class and his friends. He misses school. When the time came he became so overwhelmed he punched me hard in the face multiple times as well as his grandma. He is 90 pounds. His punches hurt. When I got him out of his seat he bashed his head and face into the wooden kitchen chair and started punching everything. I got off the meeting, crawled under the island and bawled. I left the house, came to the river, called my best friend and just came unglued. This is hard. I always tell my special needs mamas that every now and then that grief of what-may-have-been will come back to get you on occasion. Today, that grief hit me in the gut and knocked the wind out of me. It is hard to see his class operating a zoom meeting, participating and saying hello. It is hard that Abe doesn't know or understand why he can't see his people or why his whole world changed. Once the tears flowed, I could not stop them. I am angry. I am sad. I am resentful. I have raised my voice more than I'd like to admit. He will not sit for a movie. He does not play games. He cannot play independently. Every second of every moment he is awake he needs to be supervised and I am beyond exhausted emotionally, physically and mentally. I've always been mom, therapist, accountant, employer of workers for him, doctor and trying to teach him is so hard. In Abe's head.. that isn't my role. I don't know why of all things the Zoom meeting sent me over the edge but it did. Seeing all the cute little faces of his friends independently using a meeting to communicate only made my heart ache more. I miss our old life. I miss our support people. I miss our therapists and our routine and so does Abe. Sitting here on the river, crying my eyes out, admitting defeat and feeling the warm sun on my skin helps. Listening to the birds sing reminds me of simpler times. I just want for one day to be easy. I just want for my son to not want to hurt himself. I want him to understand that feeling happy to see his friends does not equate to hurting others. Some days I feel like I'm failing him. But all I can do us my best. I've literally have a massive medical team for him and none of them know how to help either because no one knows nor have they ever heard of his genetic disorder. Today my best is sitting here crying. Alone. Don't worry. I'll suck it up. I'll wipe my tears. I'll pull up my pants and do what I need to do because that is what moms do. But you know what? It's also ok to just let that grief out. So here I will sit until it is done. I am above all grateful for my mother who lives it with me as and who gave up her retirement to watch me crumple when things get hard. I erased July today.
I bet you're wondering what that means. That month had sat there for so long in my pantry scribbled across my dry erase board that the words remain shadows underneath - not unlike the shadows that dwell under the surface of life itself. Yet, tonight I finally erased it. I quickly wrote December 2019 at the top and had what I would describe as a complete emotional meltdown afterwards. I cried for well over an hour straight. The month of July 2018 sat there on that calendar for seventeen long, agonizing, life-changing months. For me, that was the month my life crumbled into a million different pieces and I made a decision that would change my life and my son's life as we knew it forever. A lot happened that month but overall my son's scare with a subdural brain bleed really changed the course of my life, what I wanted and how I wanted to move forward. But July 2018 just sat there. A literal physical reminder of when things went wrong and my path changed forever. I'd catch myself looking at it every time I went in and out of that pantry never quite understanding why I couldn't just be done with it. I'd think to myself - "Just erase it already. It's that easy." Yet, there it sat for another 518 days. JULY 2018: the month I decided to change my life as I knew it. It's hard to explain what it all means without drudging up old hurts, resentments, bad feelings and general sense of loss that came with the decision I made that month and year. Erasing those dates and the events of that month this evening was cathartic on numerous levels. I've spent every day since then working on myself and trying to be a better person than I was the day before. There are very few people who know how hard the bad days are or the thoughts that race through my mind as I lay in bed at night worrying about what lays ahead for my son and I. I used to share all the things on this blog. The good, the bad and the ugly. Unfortunately in doing so - you share intimate details of your life with friends (and strangers) and inevitably there are one or two people who take what they *think* about your life who feel entitled to be cruel or hateful about MY life choices. In fact, my last entry was 9 months ago when I received a piece of "anonymous" mail that was unkind. It made me want to stop sharing but I cannot let the cowardly thoughts of others stop me from doing what I love. Writing has been and always will be my outlet. I cannot let others take that from me. I have to stop being afraid. This is my life. This is my blog. I will speak my truth and I cannot let the thoughts of others worry me. I can only do my best. I am not the same person I was then and I hope that these last and final days of this decade continue to show me that I can do anything that I set my mind to. I have days where the tears fall and loneliness wells up in my soul. Yet, on those days I have people who hold me up. People who say a kind word or who invite me over on holiday when they know I am alone. Life as I knew it changed in July 2018. I have spent the last 17 months being Erin when for so long I was just "Abe's Mom". I didn't even have an identity. I didn't have a name. I was just this entity that existed to do for others - do for others - do for others that I never got to be just ME. It took me a long time to learn that I can be BOTH Erin AND Abe's mom. I am one person but I can be two different things. I have spent these months reconnecting with old friends who I lost along the way and I have built new relationships that have been life-changing for me on so many levels. I have fought hard Abram's entire life advocating for him both with doctors and for a diagnosis but also at the state house to change LAWS to give my son his medicine. All of that work is finally paying off on so many levels as I have been able to join an advisory board that helps keeps children with disabilities in their homes and I have accepted a new part-time position with a non-profit that is close to my heart. I am not exactly where I want to be but I am happy with who I am and what I have done. Hard, life changing decisions can be soul-crushing journeys but in the end, things are as they should be. I am on the right path. I have to remember to keep my head up and acknowledge the grief and the heartache when it comes. It's okay to cry and feel everything as long as you remember that tomorrow is another day. Life is too short to be miserable and it's definitely too short to wallow in the what-could-have-been mindset. It is what it is. Feel what you need to feel, let the tears fall and get back up and dust yourself off. I erased July 2018 today. Its shadows are still here but soon a new decade will begin and I am certain that life as I know it will change once again. Through the growing pains and heartache I am on the right track. I am so glad that I could finally erase that month in which I held so much contempt for. Goodbye July. You are officially gone forever. I've gone back and forth on whether posting this was the "right" thing to do. However, I try to look at all things in this life whether they are positive or negative as a teachable moment. I received my first piece of "anonymous hate mail" this week. You can read the letter below first and read my response beneath the image. This was mailed to my personal home with no return address and no signature. Dear Anonymous "We",
First, I do not look at this letter as a personal attack on me, despite the fact that you definitely intended it to be hurtful. I am looking at this as an attack on the collective "we" of the special needs community and we are mighty. Your letter is a prime example of not only what is wrong with humanity but also an example of the numerous assumptions and misconceptions about what people with disabilities are in fact entitled to, so please let me enlighten you. That "free healthcare" and "free childcare" that you claim to be so envious of comes at a hefty cost. Did you know that individuals with disabilities in Iowa are in fact ENTITLED to what is called the Medicaid Waiver Program? Abram qualifies for three of the five waivers that Iowa offers to children including the Health and Disability Waiver, the Intellectual Disability Waiver and the Brain injury Waiver. According to the Department of Human Services the Medicaid Waiver Program provides "service funding and individualized supports to maintain eligible persons in their own homes who would otherwise require care in a medical institution". When you state that "We are all envious of you" I have to admit I am taken aback by such cruelty and ignorance. Envious? My son was determined to be disabled by the State of Iowa before his first birthday? He is diagnosed with a brain injury and has a diagnosis of an intellectual disability on top of his rare genetic disorder. Abram was diagnosed with UBE2A Deficiency Syndrome which has caused numerous other health care issues including his brain abnormalities, kidney abnormalities and the inability to speak. Envious?! To clarify, YES my son IS ENTITLED to his "free healthcare". Abram's complex medical history is far more than the "bad behaviors" you commented on which tell me you know a little bit about my life (most likely from the outside looking in) but also are totally clueless on Abram's overall diagnosis which has unfortunately been a consistent burden his entire life. The lack of empathy, ignorance and cruelty astound me. Those "bad behaviors" you nonchalantly mention indeed are still in full force and require numerous medications daily to keep under control. At school he requires two 1:1 staff members during his school day and a highly trained and educated Autism Team that the School District put into place to help my son NOT smash his face into the walls, the floors or hurt his friends at school. It has been a VICTORY that Abram can sit for 1-2 minutes in the classroom. Think about that for a second. Envious?? That "free childcare" you mention is actually part of the Medicaid Waiver Program to prevent primary caregivers from burning out and keeping children like my son out of the system. If you are so envious, perhaps you should look into all of the numerous children with special needs you could adopt or foster. Not only would it improve your outlook on the world and change your life immensely for the best, it comes with all these "benefits" you claim to be so envious of. That "free childcare" is actually called "Respite" and "Supported Community Living". Your feeble attempt at shaming me for taking some time to myself while my son is with a Respite or SCL worker will not work. If the Federal Government thinks that I am entitled to small amount of help so that I can have a tiny semblance of a "normal" life every now an then, by all means, I am going to take advantage of that. I am never going to let some collective "we" behind an anonymous letter make feel guilty for that. For the record, in 6.5 years I've only spent three nights away from my son. All the "free time" you think I am afforded to "have to myself or to hang out with with friends" is grossly misrepresented. My idea of a good time is going to someone else's house instead of sitting in my own home. I am a good mother, I work hard to give Abram all the things that he is entitled to and I deserve time to recharge so I can continue to kick ass and be the mom that Abram deserves. Despite the fact that Abram has life-long, life-altering diagnoses (even as an adult, he will still cognitively be a young child), I most definitely am aware of how lucky I am but not in the way that you'd think. Despite our hardships, Abram is the best thing that has ever happened to me. He has taught me so much about life, love, relationships and patience. He's also taught me about forgiveness, living life to the fullest and doing my best to stay positive and put kindness out into the world. The letter ended with "Stop bitching and do something". I'd say perhaps you should take your own advice. I've advocated non-stop since the day my son was born to ensure that he got the services that he is in fact entitled to. I spend nearly all of my personal time every single day helping other people whether that be other special needs moms, running two support groups for special needs families and advocating for ALL Iowans to have access to medical cannabis. Your letter was right about one thing: I am unbelievably lucky. I have an excellent support system, have a community who loves and adores my son, a school district and school staff that go above and beyond to help him and an army of friends and family who have my back. It is pretty incredible to have so much support and love from my city and my tribe. Thank you for reminding me of that. I have something HUGE to share. So big that I've been sitting on it... wondering if I should knock on wood for fear of saying it aloud may make it just disappear again. To be honest, the entire last year has been a huge struggle. Something happened last March that started a serious chain of massive amounts of self-injurious behaviors in Abram that it felt like everything just got out-of-control. We increased his CBD:THC ratio and it helped immensely but with Iowa's current law we are unable to obtain the proper ratios we need to help him and/or are unable to afford the amount we'd need to purchase in order to do so. After he was struggling immensely at school, we went back to mayo where he was diagnosed with "behavioral dyscontrol" which is common in children with brain injuries. Abram has cerebellar cortical dysplasia, which is something he was born with and is considered a brain injury. With the EEG we learned that Abram's brain was still having generalized discharges (affecting both sides of the brain) and then they reported that he also had two new focal points (a particular spot in the brain where a seizure can start) which he didn't have previously. In the Epilepsy world - discharges can turn into seizures. So the fact that his brain was changing was alarming and his Neurologist told me that it was "just a matter of time before something BIG happened". People often say "So, the Cannabis didn't work?" Yes. IT DID and it IS. Cannabis has prevented those seizures from coming out as physical seizures and for that we are extremely grateful. Abram has abnormalities in his brain that are known to be medicine resistant aka "intractable". The cannabis is doing something so huge for him that we have not seen any physical seizures in nearly three-and-a-half years! However, his EEG was bad enough that our Neurologist suggest that we add in another medication - to which I was hesitant to do. Pharmaceuticals really did a lot of damage to Abram and traumatized me as a parent - especially when my son regressed due to the fact that right medication was not chosen properly the first time. In November, after seeing how much my son struggles in elementary school with . his peers, his father and I decided it was time to add in a second medication along with the cannabis to see if it would help get his self injurious behaviors under control and allow him to learn. It's a medicine that takes 11 weeks to ramp up to his specific dose used for both for mood stabilization and for seizures. Right now, we are only on week 4 of 11 of this new medicine (Lamotrigine) but we have seen improvements in his behavior, his attention span and his self-injurious behaviors. His therapists have reported that he can sit for a little longer (currently his attention span is literally under 2 minutes and cognitively he is about 2 years & 8 months old). Many people would shun me for adding in a pharmaceutical (including me - just 12 months ago) but the realization that my son slamming his face into the concrete, walls and tables wasn't being helped by the cannabis oil that Iowa's law limits to just 3% THC, I had to do something else in addition to what he's already taking. If Iowa's law changes to where I can help my child with cannabis alone - I will reconsider my options but for now my biggest priority is to keep my sweet boy's face and teeth the way it was intended. I digress... to the point of this whole long winded blog entry: Abram is now engaging in imaginative play!! He is 6 and the other day he took me to his kitchen, took out a pan, put two food items into it, turned on the stove, stirred it, took two plates out, put the food on each plate and served it to me with a fork so that I could pretend to eat with him. THIS IS HUGE. I did not give him instructions on what to do. He did this all on his own. I was so in love with that piece of corn on that tiny plastic plate that I cried. This is a huge developmental milestone. Second - Abe loves this show on YouTube called WILL IT BUST!? (By Garage Door Fail). For Christmas he got a Ghostbusters Firehouse Garage and he actually put a cracker under the door, pretended to put the garage door down on it and when I asked "are you playing "will it bust?" he said "yeah!!". So.. just like the guy in the video... I yelled "WILL IT BUST?!" and he smashed the cracker with the door and signed "ouch". It was the best thing ever! He's pretending. He's mimicking us. It's the best thing ever. Yesterday, Abe and I spent a great amount of time visiting with Tony Leys and Brian Powers of the Des Moines Register discussing why my son is unable to have his medical cannabis oil administered at school by a school nurse. First and foremost, I want to say that our school has been INCREDIBLE. Despite the fact that they are unable to give my son the medicine he needs (at no fault of their own), they have gone above and beyond what I could have ever imagined to make sure that he is happy and as safe as possible at school. Abram has TWO para professionals who work with him every single day and who communicate with me daily on how his day goes. He has an amazing bus driver whom he loves and who has made my life so much easier because he LOVES riding the bus to school. He has two teachers who care about his success as well as an occupational therapist and speech therapist who work hard with him to help him succeed. He is loved and welcomed there by his peers and often gets artwork sent home from his friends who love to draw him things. It makes my heart swell. The school has also built a sensory room so that Abram can get breaks to go swing and calm down on a hard day and they have brought in a behavior team that is helping to pin-point what is causing his self-injurious behaviors and the trend line from that data is going the right way. We had a rough start but things are getting better for Abram and he isn't coming home with goose eggs and bruises like he has in the past. To our school and all of the staff that makes my son's life easier - THANK YOU. You have no idea how important it is to me that my son goes to school and feels loved, welcome and taken care of. When it comes to the administration of Abram's medical cannabis oil, the school was forced to deny our request due to the fact that the Iowa Department of Education is not allowing school nurses to administer or participate in the program. Due to the fact that state law is inconsistent with federal law, Abe's school would risk losing much needed federal funding if the school nurse were to possess let alone administer his medicine on school grounds. Despite the fact that both the Iowa Department of Health AND Governor Reynold's office stating that IF a school nurse were to become a "caregiver" for Abram (like his immediate families are) they could "legally" administer the oil, our state's Department of Education forbids it do to the fact that medical cannabis is still a Schedule I Drug. Asking a school nurse to become a "caregiver" under the current law does not provide him or her any protection and could put the school at risk. In addition, the Drug Free School Zone Act still plays a major part in this issue as well, making it illegal for me to have my son's medicine within 1,000 feet of school property. In my son's IEP, the school did say they would allow for me to remove him from school grounds to medicate him, however, with him needing structure and routine, I fear that IF I were to go and disrupt his school day every day at lunch-time that I may just ruin his entire day and throw off his routine entirely. Pulling a child with special needs from their day, putting them in their car seat and driving 1,000 feet away to give them medicine seems like a crazy thing to have to do when the State of Iowa has already admitted it is MEDICINE by finally allowing growth and distribution within our state lines. Many people site the fact that Epidiolex is now FDA Approved. However it is only approved for Lennox-Gastaut Syndrome and Dravet Syndrome, so Abram doesn't even qualify for it. Not to mention, the price tag of that drug is $2,708 PER MONTH and we certainly could never afford that without insurance covering it. Not to mention, a good portion of it is ethanol, artificial flavoring and sucralose - a known seizure trigger. The fault in this issue does not lie with the school - it lies with our Federal Government not taking the proper stance on medical cannabis. I don't understand how this can continue to be an issue. When you have a medically complex child, life is already difficult to navigate most of the time. So when you add in politics, lobbying and advocating for law change it can sometimes be too much to bear. I just want my son to have the same rights as any other child in need of medication at school. I would love it if my Federal Legislators would take a stand and do the right thing for families like mine. I've been begging for help from my Federal Senators and Representative in Congress for years now. Things need to change at the Federal Level so that medically complex patients and families don't have to continue to suffer. Click on the image below to read the Des Moines Register Article
I've never met another human more determined, hard-working and filled with love than my son. They said he may never walk. They said we could do PT until we were blue in the face and it wouldn't make a difference. They said he had a "cognitive disconnect" and that he'd never understand that a picture represents an object. Now he's riding an adaptive trike, walking up stairs alternating feet, going down them with assistance and he can jump. Now he's using sign language, picture exchange and using a communication device to tell us what he wants. Never let anyone tell you what your child will or won't do... Even if they have special initials behind their name. Abe will do all the things he was meant to do, when he is ready to do them and I will celebrate all the tiny-to-most (but HUGE to us) milestones in his life. He has taught me to slow down, to appreciate the little things, to love hard and to forgive easy. He also taught me there's a reason to smile every single day no matter how bad of a day you've had. You've just gotta keep your chin up, surround yourself with people who make you laugh and love the little things in your life that make up the big things. Thanks Abe. You changed my life. After 4 years of relentlessly fighting to change laws for medical cannabis for Abram, I was able to attend the invite-only Grand Opening of MedPharm Iowa. We got to tour the grow facility as well as the labs where they will be making my son's medicine. I cannot express how grateful I am that this is happening in our state for Iowa's sick and suffering. I am honored to know the amazing women who fought for this to happen in 2014, who I feel played a crucial role in my son being well and celebrating over 3.5 years of seizure-freedom and who I am lucky enough to call my dear friends. I will always be thankful to you ladies for blazing a trail so that kids like Abe could get the help they very much needed. I am especially grateful to MedPharm Iowa who always make it a point to include patients and caregivers in their plans and try their hardest to deliver products that we all need. They took a chance by investing $10 Million Dollars just to help Iowa's sick and suffering so that families like mine can give their children a quality of life that they deserve. I cannot express what it mean to see plants growing in Iowa and knowing that soon enough, my son will have the medicine he needs, right here at home. Our dispensaries open in less than 30 days I couldn't be more proud and happy. An Interview About Abram Des Moines Register - Photos of the Grand Opening
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About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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