Tuberous Sclerosis Complex

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    Meghan W
    Meghan W @meghan-w
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    A Treatment for TSC That Helped Stop Seizures From Ruling Our Lives

    “OK, if she does this one more time, I’m going to call the doctor.” I made this deal with myself one afternoon when my youngest daughter was 7 weeks old. My husband Mike and I were finally in the groove of having three children, and so far Cammy had been an easygoing and good-natured baby. Then one day my mom mentioned something concerning — she had seen Cammy suddenly punch her left arm out while shaking and looking off into the distance. We had never noticed this before, but saw it happen that night, each episode lasting about five to 10 seconds. That moment I made a deal with myself — that I would call the doctor if she did it again — her arm shot out, and she started shaking just 10 minutes later. It was a Friday afternoon before a long weekend, but I wouldn’t wait. We showed Cammy’s pediatrician a video we took, and I knew he was worried when they made an appointment with a neurologist for Tuesday. That weekend was horrible because it started happening more frequently. We sat there panicking, our minds going 100 miles an hour, wondering if we should go to the hospital. We made it to our appointment on Tuesday, and after the neurologist performed some initial tests, he told us we needed to get her an EEG and MRI right away. We went straight to the hospital and ended up being there for three days. I’ll never forget how little Cammy looked when they hooked her up to her first EEG. The doctor came in a little after midnight. We could tell he was nervous when he diagnosed Cammy with tuberous sclerosis complex, and then immediately said, “I encourage you not to Google it.” Our whole lives flashed in front of our eyes. All I could think about was how different everything was going to be. Tuberous sclerosis complex (TSC) is a rare genetic condition that affects nearly 50,000 people living in the U.S. TSC causes benign tumors to grow in the brain and other vital organs like the kidneys, heart, eyes, lungs, and skin. It often affects the central nervous system, which can cause a host of issues ranging from seizures to developmental delays. We learned TSC typically appears in children within their first year and that it affects each person differently, with signs and symptoms ranging from very mild to severe. When we met with the TSC specialist the next day, Cammy was immediately put on medication. It helped with her seizures for a while, but over time they were getting progressively worse. We started another medicine, but that still didn’t help. Cammy’s seizures kept getting longer and more frequent until she was having a seizure every 10 minutes. Not only was Cammy cognitively affected, but her seizures also caused her to lose the use of her left arm and hand. We talked with Cammy’s doctor and decided to put her on a particular diet on top of her medicine. It was a lot to learn, but we adapted. We’d have weeks of no seizure activity, and then they would slowly start increasing again. Every time we thought we found something that was working, we’d have to say those dreaded words, “It happened again.” Every time the seizures came back, it was worse than the time before. It was brutal, and her seizures controlled everything in our lives. Mike and I arranged our work schedules so that he or I could always be home with Cammy. The doctor told us managing Cammy’s seizures would be the number one predictor of her development, so we wanted to give Cammy every chance we could. It felt like we were in a race against time. One day, it seemed like Cammy’s seizures just stopped. It was exciting at first, but two months later we got the feeling something wasn’t right. Cammy looked uncomfortable, and personality-wise, she seemed completely vacant and not like herself. Her skills would change from day to day — she could roll over one day, maybe sit up on her own, but then the next day she wouldn’t be able to do any of that. But we hadn’t seen any seizures, so I emailed our nurse. After an EEG, we realized Cammy had over 30 seizures that day, we just couldn’t see them. What do you do when your baby’s having 30 seizures every day? Desperate to get her some relief, we talked with her doctor about our options. Since Cammy had seizure activity from different parts of her brain, her doctor recommended surgery and adding EPIDIOLEX ® (cannabidiol) to reduce her seizures. EPIDIOLEX is the first and only FDA-approved prescription CBD medicine for seizures associated with TSC, ​​as well as two other seizure conditions, Lennox-Gastaut syndrome and Dravet syndrome. She told us about the possible risks and benefits of EPIDIOLEX, including some potential side effects Cammy might have increased liver enzymes, sleepiness, diarrhea, or loss of appetite. Considering different treatment options always comes with mixed emotions — including the fear and anxiety that comes with making a change. However, since we had been working with our doctor and trusted her, we decided that if she thought something could help, we’d give it a try. IMPORTANT SAFETY INFORMATION Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX. EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. Please see additional Important Safety Information & Indications below. Soon after the surgery she started taking EPIDIOLEX, and we were so relieved when she started experiencing fewer seizures. It was like a light was back in her eyes that we hadn’t seen in months. She seemed less tired and glimpses of her personality began to peek through — it was almost like she got a gold medal! It took a while, but very slowly she started army crawling, and then walked on her knees for a while. We were working with a gait trainer at physical therapy. Then, on Valentine’s Day, something amazing happened: Cammy was in the kitchen, and she stood up and took a few steps! It was incredible! After 16 months of nothing but improvement, Cammy did start having seizures again. So we talked to her doctor with whom we have a great relationship, and after seeing a video of Cammy, she agreed Cammy was having more seizures. She decided to increase the dose of EPIDIOLEX to keep up with Cammy’s current weight, and we were able to keep moving forward with her progress. Although Cammy is obviously delayed, she is light years from where she was or where she would have been without surgery and EPIDIOLEX. When I see Cammy playing with her brother and sister, I am grateful for where we are. I almost can’t believe it when I see all three children going down the slide, one right after the other. Every time Cammy does it, the third child in a row, it’s still emotionally overwhelming for me. I think of all the progress she has made, how she’s able to be a bigger part of her siblings’ lives, and the fact that she’s even been able to go to pre-school where she’s thriving. Seeing where Cammy is now at 3 years old gives us the confidence to handle whatever may come next. Cammy’s progress and where she’s at now have given us hope for the future. Cammy’s going to be the best Cammy she can be, and she’s proving that to us every single day. To learn more about Cammy’s story, and watch videos from other families on their TSC journeys, check out EPIDIOLEX patient stories . Learn More Important Safety Information & Indications (continued) What is the Most Important Information I Should Know About EPIDIOLEX (cannabidiol)? EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. In some cases, EPIDIOLEX treatment may need to be stopped. Call your doctor right away if you start to have any of these signs and symptoms of liver problems during treatment with EPIDIOLEX: loss of appetite, nausea, vomiting fever, feeling unwell, unusual tiredness yellowing of the skin or the whites of the eyes (jaundice) itching unusual darkening of the urine right upper stomach area pain or discomfort EPIDIOLEX may cause you to feel sleepy, which may get better over time. Other medicines (e.g., clobazam) or alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how EPIDIOLEX affects you. Like other antiepileptic drugs, EPIDIOLEX may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call a healthcare provider right away if you have any signs of depression or anxiety, thoughts about suicide or self-harm, feelings of agitation or restlessness, aggression, irritability, or other unusual changes in behavior or mood, especially if they are new, worse, or worry you. Take EPIDIOLEX exactly as your healthcare provider tells you. Do not stop taking EPIDIOLEX without first talking to your healthcare provider. Stopping a seizure medicine suddenly can cause serious problems. What Else Should I Know When Takin g EPIDIOLEX? The most common side effects of EPIDIOLEX include increase in liver enzymes, sleepiness, decreased appetite, diarrhea, fever, vomiting, feeling very tired and weak, rash, sleep problems, and infections. EPIDIOLEX may affect the way other medicines work, and other medicines may affect how EPIDIOLEX works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and cannabis-based products. What Additional Information Applies to Women? If you are pregnant or plan to become pregnant, EPIDIOLEX may harm your unborn baby. You and your healthcare provider will have to decide if you should take EPIDIOLEX while you are pregnant. If you become pregnant while taking EPIDIOLEX, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (by calling 1-888-233-2334). The purpose of this registry is to collect information about the safety of antiepileptic medicines during pregnancy. Because many medicines like EPIDIOLEX are passed into breast milk, talk to your healthcare provider about the best way to feed your baby while taking EPIDIOLEX. What is EPIDIOLEX (cannabidiol)? EPIDIOLEX is a prescription medicine that is used to treat seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex in patients 1 year of age and older. It is not known if EPIDIOLEX is safe and effective in children under 1 year of age. Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch , or call 1-800-FDA-1088. You may also contact Jazz Pharmaceuticals at 1-833-424-6724 . EPX-25929-0422

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    Purnima S
    Purnima S @purnimas
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    Dear Daughter: You Are So Much More Than Your Rare Disease

    Dear Daughter, As a newly pregnant couple, we started talking about this little human growing inside us. We loved you without knowing how you look, what you are, and without getting anything in return from you. We could feel your invisible presence, and we were eager to meet you! We were so happy and had no anxiety about the pregnancy. We felt we were living in a dream come true until we were told the doctor saw some tiny bright spots on your heart and sent us for more tests. A few tests later, we heard some big long words that gave you a probable diagnosis of a rare genetic disorder called tuberous sclerosis complex (TSC). It felt like someone had pulled the chair out from underneath us. The doctor handed us a piece of paper with just three words written on it to research. Doesn’t sound a big deal, right? It’s only three words. That’s what we told ourselves. After researching, we found what was hidden behind those three words on that otherwise blank paper. TSC causes benign (noncancerous) tumors to grow on different parts of the body, mainly the brain and kidneys, but also in places like the heart, lungs, and skin. The tumors can cause different symptoms such as seizures, learning disabilities, developmental delays, kidney problems, and issues with vision or breathing. Like the doctor told us, TSC is a rare condition, but there’s so much more to the three-letter acronym than most people would think. This probable diagnosis of course didn’t make us love you less. In fact, you inched even closer to our hearts. You kept growing day by day and our love got stronger and stronger for you. Finally, the time came – we were all set to welcome our tiny little girl. Soft like clouds, bright like sun, soothing like moonlight, melodious like your Dad … and here you are to say hello to this world! In a fraction of second we were a family of three, nothing unusual in this world but so magical for us. Then, a team of physicians walked in and asked us to sit comfortably. We knew we were scared about what the results would be but happy at the same time about having this little bundle of joy in our arms. Heart beats, moments, memories, and everything else got mixed up slowly, and I felt frozen. Instead of coming to the point directly, doctors seemed to be talking about everything at once. We understood things were not right. We had you only for 10 hours, but now we’re hearing that due to TSC you’ll never be able to travel outside the country, walk, talk, or experience life like a “typical” child. Those moments when we first heard your TSC diagnosis from the doctors and the weeks, months, and years since have been challenging. But we had that glittering shining light in your eyes, daughter, that’s what made us survive and keep going stronger and stronger. Parenting is certainly difficult for everyone but especially those parents navigating life with a medically-complex child, like my daughter with TSC. We’ve had an unexpected life but one truly filled with magic. We will never know how a child without TSC learns things, explores their environment, loves you as a parent, and matures. But we sure do know how hard it was for you to learn to walk independently. When your first and second birthday passed without taking steps, we started to give up on the dream of you walking. But we let you progress at your own pace, and we kept supporting you 100%. Then, 33 months later, you did it — you took your first steps on your own. Everyone records their child’s first steps, but I didn’t. I watched you walking toward a toy during physical therapy, and I didn’t record for your dad because I couldn’t take my eyes off you. This example is one of many “little wins” we celebrate that we might have taken for granted if you didn’t live with TSC. We didn’t have the chance to record your first steps, but we did record your first seizure. Over 90% of people living with TSC develop epilepsy, and unfortunately, you were one of them. The night before your first Christmas, your dad recorded a video of you making some unusual facial expressions and sounds. It turns out we were recording seizure activity. We still do this five years later for your medical team to review. We try and also capture the less worrisome aspects of your life — the parts we’ll treasure forever: your smiling, rolling over, pushing up, feeding, saying “Mamma” and “Papa,” giggling, popping bubbles, being silly — you just being you. Even though we get to experience all these normal childhood moments with you, there’s never a day we don’t worry, never a day we don’t think of doctor’s appointments or therapies. And because of epilepsy, there are days where your smile disappears, days where you don’t do any of those “normal” activities we like to record. I held you in my arms during and after your first seizure, and I still continue to do so 60 months later in your life. We pray for you to get stronger and stronger. We help you learn the same thing several times over again, like clapping, because forgetting and relearning is part of what you have to live with.. I dread you forgetting how to say “Mamma” or “Papa” after an emergency hospital stay or even walking. But I do know one thing: I can’t ever forget how much you love us and how resilient you are. That’s how our life is: sweet and sour and sometimes complicated, but it is our life with our little girl. I feel so happy that I couldn’t control myself from crying when I first saw you rollover, sit up, smile, push up to stand, walk, run, and say basic words. We are so proud to be your parents.. I fear losing you, but know that my love for you will never fade. We love you so much, Mamma and Papa

    Community Voices

    A Letter To My Son

    Dear Wyatt,

    I try everyday to put myself in your shoes. I try to see the world as you see it. It’s hard, my baby. It’s hard to see what you go through. It’s hard to relive the last 7 years of hospitalizations, surgeries, doctors appointments, therapies..ALL of it. It’s hard to look at the future to know there is more. I cannot imagine how YOU feel. I wish you could tell me. I see you cry, you see me cry, sometimes we cry together. But remember that, I will always be here to let you cry on my shoulder, and I will always be here to cry with you.

    Your strength amazes me. That’s one thing I love reliving. You ARE SO STRONG. One thing I know for sure, whatever comes your way, you fight your way through it (literally ????).

    I wish I could change the world for YOU. I wish I could give you my voice. My health. My everything. If there was a way, I would. I wouldn’t trade you for the world, but I would change the world for YOU. I would make sure the only songs that were ever played on the radio were, Catch by Brett Young, How to Love by Lil Wayne, and Sit Next To Me by Foster The People. See? I pay attention. I can tell when you love a song. You kick my seat when the song is over and then I play it again and you’re happy. You have crazy taste in music, as do I and I think that’s why we travel so well together.

    I wish so badly you could tell us the decisions we make for you are the right one. At 7, you should have a voice to speak your mind and opinions. But no worries my baby, I will always be here to be that voice. And as long as you smile, I will know I’m making the right decisions.

    Love,

    Mommy.

    #TuberousSclerosisComplex #tscstrong

    #Autism

    #MedicallyComplexChild

    Community Voices

    A letter to my son.

    Dear Wyatt,
    I try everyday to put myself in your shoes. I try to see the world as you see it. It's hard, my baby. It's hard to see what you go through. It's hard to relive the last 7 years of hospitalizations, surgeries, doctors appointments, therapies..ALL of it. It's hard to look at the future to know there is more. I cannot imagine how YOU feel. I wish you could tell me. I see you cry, you see me cry, sometimes we cry together. But remember that, I will always be here to let you cry on my shoulder, and I will always be here to cry with you.

    Your strength amazes me. That's one thing I love reliving. You ARE SO STRONG. One thing I know for sure, whatever comes your way, you fight your way through it (literally 😘).

    I wish I could change the world for YOU. I wish I could give you my voice. My health. My everything. If there was a way, I would. I wouldn't trade you for the world, but I would change the world for YOU. I would make sure the only songs that were ever played on the radio were, Catch by Brett Young, How to Love by Lil Wayne, and Sit Next To Me by Foster The People. See? I pay attention. I can tell when you love a song. You kick my seat when the song is over and then I play it again and you're happy. You have crazy taste in music, as do I and I think that's why we travel so well together.

    I wish so badly you could tell us the decisions we make for you are the right one. At 7, you should have a voice to speak your mind and opinions. But no worries my baby, I will always be here to be that voice. And as long as you smile, I will know I'm making the right decisions.

    Love,
    Mommy.
    #TuberousSclerosisComplex #tscstrong
    #Autism
    #MedicallyComplexChild

    Community Voices

    When a Tuberous Sclerosis person wants to be a pro singer

    My name is Alexis Fernandes, I have 34 years old, since 5 years old that I used to say "I want to become a singer" but honestly I only thought on being a pro singer when I was about 14 years old. I am a person with TSC (Tuberous Sclerosis) so it is normal for me to have another diseases accompanied with TSC because that is what Tuberous Sclerosis is about. It is a disease that affect many parts of your body. In and outside. On my cass it only affected outside until now which is excellent, I am even considered one of the less affected with the disease. There are some people with this disease that already went through a wheelchair.
    So...from my 14 years on, I started to participate in contests and going to music schools in order to learn more, and now with 34 years old I am a producer (I even won an independent label contest as a producer but I had to refuse their contract because it would limit my actions), I am a singer, I am a dancer, a songwriter, a lyricist, I already did all that stuff. But it does not end here. Recently there was a friend of mine, who decided to make a documentary about me, about autism (yes I do have a little bit of autism as well) and how the music has an impact in our lives. It is a documentary very well elaborated by a medic that has been studying and living in Canada for a long time. Now she is back to work in my island and also she finished the documentary here. I hope you enjoy it.

    m.youtube.com/watch

    #Autism #TuberousSclerosisComplex #Music

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    I see you!

    <p>I see you!</p>
    Rebecca T.

    Action Steps to Prepare for the Future of Our Disabled Child

    “Mama, when I grow up I want to be an astronaut and see the stars.” “Mama, when I grow up, I want to be a doctor.” As always, I say, “Yes, sweetie, that’s a great idea.” The truth is much more complicated — we don’t know what adulthood will be like for our child. There is an unsaid knowing that we will be caring for our medically complex and intellectually disabled daughter in some form for the rest of our lives. What that will look like over time is uncertain at this time. There is both sweetness and terror in that statement. We know her implicitly; we can guess her needs without words; we know exactly who to call and how to handle any medical needs that arise. No one will ever be able to care for her like us. Nevertheless, we will not live forever. One thing remains, every day is one day closer to the future and adulthood. This reality is even felt by our 7-year-old, “I’m way younger than you and daddy. That means you will die way before me, and there will be no one to drive sister around. Will I have to drive her around to all her appointments and everywhere?” he asked one day. “Buddy, that is a long way off, and we will always make sure both you and your sister are taken care of even if we are not here. It will always be your choice if and how you help your sister,” I replied. I meant that wholeheartedly, yet daily life is so all-consuming we rarely have time to plan what will come next week, nevermind years from now. We have named guardians for our children in our will, but do not have an actual safety net of long term measures. It is difficult to look to the future when the present is so all-consuming. Nevertheless, my mind drifts there when I help her with everyday tasks. How can I help her learn to become independent and take care of her personal needs? Read fluently enough to understand written directions? Teach her money so she can make everyday transactions? Learn to use a phone? The list seems never ending. The truth is, we cannot teach our daughter all these things on our own. We cannot plan for the future if we are drowning in the present. And we, as a family, cannot progress in the present if we are fearful of the future. In the famous words of Hagrid in J.K. Rowling’s “Harry Potter” series, “What’s comin’ will come, an’ we’ll meet it when it does.” Yet there are ways we can prepare now to achieve success better when the time comes: 1. Utilize the help available in the present to prepare for the future. The saying goes, “it takes a village to raise a child.” It takes a village of experts to help raise our daughter. She is young and capable; though it does require the help of experts to teach her the necessary skills for successful independent daily living. Optimizing the support we receive now increases the likelihood of future success. Applied behavioral analysis (ABA) can help explicitly teach her complicated activities by breaking down tasks and reinforcing success. Physical therapy, occupational therapy and speech therapy all augment and increase her abilities to meet the increasing responsibilities of childhood through adulthood. 2.  Hold those charged with teaching her accountable. Even when we use the resources available, there are times when those charged with helping her on her way to independence fall short. School is vital to her success and often the most challenging area to get her what she needs. Teachers are best equipped to help my daughter learn complex tasks such as reading, writing and math. Laws are guiding the education of those with disabilities, the Individuals with Disabilities in Education Act (IDEA), section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA) ensure she is given what she needs to learn and progress. We must hold the school to the task and make sure they adhere to their obligations to her based upon said laws. 3.  Maximize her chances of independence with follow-through. There are times when it is so much easier to do something for your child rather than allowing them to struggle through the task. This is especially true for children with disabilities. The time and dedication involved in allowing my daughter to try, even if it will end in her needing my assistance, can be overwhelming. It is much easier to dress her than to watch her struggle with dressing and use all the techniques taught to us by her ABA therapist, occupational therapist and physical therapist. While easier in the short term, it hampers her in the long run. 4.  Have the hard conversations. “What is comin’ will come,” and we must prepare for it. The unsaid always seems more daunting than that which is brought to light and explored. The practical is only half of what must be worked through for the future; the remainder is the feelings that come along with that. If emotions are not explored now, they will get in the way of any practical plans we make. We cannot imagine what it will feel like for our daughter to be independent or require care from others if we do not discuss it. 5.  Start preparations now by allowing others to help care for her. We will always be the best caregivers for our daughter. Even so, a future without us is inevitable. The more practices both we and she have with others caring for her, the better we all will fair in the long run. It helps build our daughter’s flexibility and independence to allow others to step in for us. It also helps our wear with all to have a break in caretaking. The more we work on actionable steps in the present, the better the future for our entire family.

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    Heather Lens

    Life After My Daughter's Tuberous Sclerosis Complex Diagnosis

    Six years ago I was catapulted into a very foreign world and was left with no map or GPS. This new world was called rare disease. Unfortunately, I was not welcomed with a hot towel or a glass of cucumber water. No, the greeting I received was a kick in the gut and a wrench to the heart. Everything I thought I knew about life was erased from my tumultuous brain and I felt as if I was starting all over. I longed to escape. I was willing to run as far as needed as long as they would transport me back to my old world. The one that was oblivious to illness and suffering. I wanted to go back to my home and wake up in my bed realizing it was all a bad dream. I’d close my eyes and beg and plead with God to let this be over. He could summon a plane and send me home. He could snap his fingers and I’d be gone. But no matter how many prayers of unrecognizable words I was still there. I wasn’t getting out. This was my new home. Accepting something you hate is not easy. I loved the life I had built in my old world and I had no desire to desert that life! But days and weeks and months went on and still, my world had not changed. I woke up one day with a heart that could no longer feel pain. I was strong because that’s what my new home required. There wasn’t much room for sadness or grief so my heart began to build again, and as it did many walls were built to help support the heaviness of my soul. With each new seizure and diagnosis, another wall would rise. I felt strong and empowered in those times because I wasn’t allowing my new world to dismantle me. When you’ve built walls high and wide you have a false sense of confidence… I thought I was doing well moving through the motions and accepting my new title. But life has a way of putting you in your place and doing it quickly. A conversation during a hospital stay ended with, “Your daughter’s only hope for seizure control is brain surgery.” I turned my head off, but I could still hear them talking: “She may lose her speech, she might lose her memory, she may lose her ability to move, but this is her best option.” Anger and fear filled my entire body and the walls I had built began to shake with a vengeance. As much as I wanted to be “OK” and feel strong, the truth was, my heart was breaking and I was angry. My daughter had an incurable disease. She had tumors on her brain, heart, kidneys and skin. She was having over 30 seizures a day. We were having to straddle and restrain our innocent  3-year-old to get rescue medication in her system. She would look at us so confused as if we were hurting her. We had to listen to her scream, “I’m a good girl!” as nurses and doctors would enter her room. I had to listen to doctors tell me she would never live an independent life. We had to listen to the statistics of her disease. And we had to accept that my beautiful, loving daughter was affected by a sick and twisted disease that would never go away. The world of rare disease was about to take me under when some visitors from my old world made the trip over. I had friends from high school who coordinated an event to raise $10,000 for us during her two brain surgeries. We had family who came to pick up the pieces while we were frantically getting ready for her brain surgery. We had thousands of people praying for us when we couldn’t find the words to pray in those days. As uncomfortable as it was for me to show my pain, I knew there was no other way if I wanted to remain in the game for my precious little girl. I had to throw away my desire to appear strong and to appear put-together, and trade it for the mom in her yoga pants with mascara running down her face. Later on, I’d realize my mascara-stained face would also double as war paint. Several years later, and guess what? I’m still in the same world. My daughter still has the same disease. And although her seizures are currently controlled, we now have a new diagnosis of stage 1 chronic kidney disease. This world is still not my choice. I’d much rather go back to my home and have my mind erased of the past six years. But that is not my reality. My heart is still broken, but it’s mending. And the walls that were built are slowing coming down. Are they all down? No. It’s been a process of knowing how to be truthful and raw with my loved ones. Sometimes I revert and want to get to building, but then I remember the loneliness I felt with those barriers. We have many new neighbors coming to our world, and although I hate that they are joining us, I’m so grateful for their companionship. Living with a tribe of women who understand me takes away so much of my sorrow. My new world is not perfect and it’s still filled with a lot of pain and heartache. But I am learning to accept that I don’t have to have it all together. And I don’t have to be strong for everyone. I just have to show up. Even if it’s in my yoga pants and my mascara running. I am strong not because of the walls I have built but because of the love and grace I have experienced.