Infantile Spasms

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    Genny
    Genny @genny
    contributor

    Finding Courage in Connecting With Parent of Child With Complex Needs

    It was a typical, steamy hot late-August day in 2012. I parked my black Chevy Tahoe on a side street not far from Olympia Kebob House, a well-known Greek restaurant in Richmond Heights, MO. I hated driving that big car on the narrow streets, but everything about life irritated me right now. I pulled the visor mirror down, moved my hair around and touched my under eyes with my ring and middle fingers. They were puffy from all the crying I’d been doing for a month straight. There was no use. I put the mirror back up, put on my sunglasses, grabbed my bag in the passenger seat and walked down the street toward the restaurant. I was on my way to meet a mom, Elizabeth, whose son, Dan, passed away about six months earlier. He also had infantile spasms. My daughter June had been diagnosed with infantile spasms about a month earlier. Elizabeth’s husband worked at the same law firm as my husband, Matt. What are the odds that we would know someone who also had a child with infantile spasms? A year ago, I had never heard of such a thing, and now I was meeting someone Matt knew who had a child diagnosed with them too. It felt bizarre. I walked by the outside seating, nearly empty because of the sweltering heat. As I walked toward the door, I thought about what to say to Elizabeth. I had never known anyone who had lost a child. She texted me that she already had a table so I passed by the hostess stand, and around the corner there I saw a woman sitting by herself in a booth looking at the menu. I hadn’t met Elizabeth yet, but I knew it was her. The rest of the world may not notice, but once you’ve experienced what we’ve been through, it’s hard to miss the subtle agony that’s in our entire being, especially when you are looking for it. It’s like a part of us is somewhere else even in the midst of viewing a lunch menu. “Elizabeth?” I said, standing beside the table. “Genny, hi,” she said in a nurturing way. She stood up, and we hugged. Before this moment, right here, I hadn’t yet met another person who could possibly understand what I was feeling. She was my very first sorry-to-meet-you-this-way person. We broke away and sat down across from each other in the booth. “Thanks for meeting me,” she said. “Are you kidding me? Thank you for meeting me,” I chimed in. “I am so sorry about Daniel,” I said. Then very softly adding, “that he…died.” I wasn’t sure if saying the word died would offend her or make her sad. It’s not like she didn’t know that he was dead every second of every day. I just didn’t know how to say it or how to phrase it. “Thank you,” she said. “It’s been really tough. I am so sorry that June has infantile spasms too. It’s a horrible diagnosis, and doctors know very little about how to stop them. But you still have time to get them under control.” I appreciated her hopefulness. “It’s just not many parents in your situation who want to talk to the parents of the child who has died. They want to talk to the parents whose child is doing well.” “Really?” I said, shocked as I put my napkin in my lap and then took a sip of water. Why wouldn’t they want to talk to her? Now, years later as a bereaved mom too, I totally understand what she meant. Some parents, understandably, avoid us and our stories. They just can’t go there. Newly diagnosed parents usually look for hope and seek out a family that can give them the future they are looking for. I don’t think I truly understood what June’s future looked like because it hadn’t crossed my mind that Dan’s fate could be June’s fate. And honestly, I was desperate for connection. “I am just looking for someone who understands how I’m feeling and can offer me some advice. I am so thankful you were willing to meet me.” The waitress came, and we ordered our lunches. We talked about Dan, and I told her about June. We talked about treatments. By that time, June had already failed one medication, but there were still other options. Elizabeth was so bright and so on it. She had done so much research on frontline medications, and I was so impressed with her. She was the first parent advocate I had ever met, and I was in awe. As I pulled out my notebook and started writing notes, I began firing questions at her. I paused and said, “I just feel so overwhelmed. You seem so smart, and I don’t think I am as smart as you. What if I don’t even know to think of the right questions to ask or seek out? If doctors can’t even help me, how can I find the right treatment or doctor or procedure for June? I don’t know what I don’t know!” “I know. It is so overwhelming,” Elizabeth said. It was the first time I didn’t sense pity from someone – besides my therapist– who listened to me as I shared my fears. It was pure empathy and understanding. “If I can give you one piece of advice as you start down this road: just remember it’s a marathon, not a sprint.” She paused like she was thinking for a moment. “And if you can’t cure the child, medicate the mother.” We both laughed. “But in all seriousness, are you seeing someone? What we go through as parents is traumatizing, and if you can see a therapist, it’s beneficial and important.” “Oh, yes,” I said. “I am seeing a therapist, thank goodness… “And I am taking medication too,” I said, smiling. “I feel like a different person since starting it.” *** I recently came across the quote Elizabeth gifted me with nine years ago, “It’s a marathon, not a sprint,” on Instagram. It got me thinking about Elizabeth and the encounter I described above. What would I have done without her? Elizabeth was a huge support, and I try to be to other mothers what she was to me. We all have a first sorry-to-meet-you-this-way person, and she usually has a profound impact on us. Earlier this month, I asked some fellow parents what was the best piece of advice they received early on in their journey, and I thought it would be helpful to share their responses here because they are all so important. 1. Lean on other parents; they will be your best source of advice and support. 2. Asking for help is a must. 3. Live in the now. Nobody knows what two, five, 10 years will bring, so try not to live there. 4. Listen to your gut. Don’t let anyone limit your child. 5. Appreciate all of the inchstones and don’t compare your child to other typically developing kids. 6. More is not always better. 7. Don’t always assume things will improve. Find joy and happiness wherever you are. 8. You don’t have to go through this alone. 9. One day you will feel joy again. Believe in that. 10. If at any point you don’t feel heard, don’t feel guilty switching doctors. I had to. 11. You can go out for a glass of wine, even go for a weekend away! 12. Only we, as parents, can be the best advocates. We know our children best! I loved all the responses people sent to me when I asked parents to send me advice they received and some they would give to new parents in our situation. Talk about a resilient group of people. In some ways, we have more reasons than most to give up, but I hear support, validation and encouragement in each one of these comments. It reminds me why I love parents of children with complex needs so much. I want to leave you with another piece of advice Elizabeth gave me that day we met for lunch in 2012. She said, “You will see families with children who are struggling greatly, as well as children who have made tremendous progress. I know it’s hard, but don’t compare June to other children with infantile spasms… Try not to get too hopeful or too fearful from the stories you read online and the families you meet.” If you’re a parent of a medically complex child at any point on your journey, I would be honored to connect with you, whether as your first sorry-to-meet-you-this-way person or as an additional support. I’d be grateful for the chance to honor June’s journey by doing so. This post was written in loving memory of Dan O’Connell and in gratitude to all first sorry-to meet-you-this-way relationships.

    Rachel Ablondi

    What I Want Doctors to Know About My Son With a Rare Form of Epilepsy

    My 21-year-old son Andrew is diagnosed with epilepsy. His epilepsy diagnosis is a rare one. Lennox Gastaut syndrome (LGS) affects only about 50,000 children and adults in the United States. One of the most difficult aspects of LGS is uncontrolled seizures. This is definitely the most difficult part for Andrew and our family. I’ve learned a great deal over the years from Andrew’s neurologists, and now as a seasoned mom to a son who requires constant care, I would like to share my perspective in return. I want to maintain the relationship with Andrew’s neurologist, and also continue our partnership in Andrew’s care. First and foremost, please understand there is nothing I want more than for Andrew’s seizures to be controlled. That one thing is by far my greatest wish for him, and I cannot make that happen. That weighs on me every single day. I started like everyone else as a new mom, and was immediately thrust into a world involving constant medical care, difficult decisions, medicines, medical equipment, therapies, dietary issues, seizures and so much more. In those early days, I had to do my own research. I found the need to connect with other families facing the same circumstances. I don’t know of many other diagnoses where parents and their children live this kind of life. Day in and day out we live in constant fear of losing our children, and helplessly watch daily, sometimes hourly seizures, and medication ups and downs. This life can bring you down if you let it. As Andrew’s mom for over 21 years, I can for certain say, I am an expert in “Andrew Care.” Please don’t question my decisions without experiencing personally our day-to-day lives. To get to the medical appointment to see you, I’ve lost some sleep the night before as I have worried about every move I will make to get my son out of our door, and then to your office. I have other children at home I have to arrange care for as well. I drive over an hour to get to your office, and have to circle your building until a parking spot opens that will accommodate my larger wheelchair-accessible van. We wait our turn in the furthest corner of the waiting room so Andrew won’t pick up germs from someone else. My son likes to make noise in quiet settings, and I frantically try to keep him occupied so he doesn’t make too much noise in the quiet waiting room. Oh, and I pray he doesn’t seize while he’s waiting. When my son seizes his arms and legs shake violently, and he’ll gasp for air. I don’t want others to see him this way. Andrew deserves his dignity, and not to be stared at. Doctor visits are stressful even before they begin. I waited six months or more for this appointment; please give me your undivided time to hear my questions and concerns. I know you’ve seen many patients today. I’ve been to enough appointments over the years to know you’re on a tight schedule. I have researched LGS online. I have attended conferences in person. I’ve made it a priority to educate myself as much as I can, and I don’t see how that’s a bad thing. It’s OK that I’m an educated caregiver. Medications do have side effects, especially anti-epileptic medications. We’ve learned this all too well. Sometimes when there’s an issue, it’s the simplest thing, not the most complicated. These medications aren’t benign. Consider me part of the team. My son had a procedure done recently at the hospital. A few days before the procedure, the nurse called me to go over pre-operative instructions. She asked me about Andrew’s seizures, and admitted she’d never heard of LGS. She made sure that my husband and I could be by our son’s side in the hospital. Ask for my input, ask me questions. Knowing that you are interested and having your respect as someone who knows her son and his diagnosis validates the job I am doing. Meet me where I am. When my son was 2 days old, he seized. He was whisked away from me and brought behind closed curtains. I saw the urgency in your care, we needed answers, and we entrusted his new, fragile life to your expert medical care. I was terrified. I knew nothing. You cared for my son, ran tests, shared results, directed me on what steps to take next. I was a new mom. I needed direction. You gave that to me, and even more, you gave me a shoulder to cry on. When my son was 1 and seizures that were under control returned as clusters of seizures, Andrew was given the diagnosis of infantile spasms. Heartbroken and scared, you gave me options for treatment of this new diagnosis. Over the next few years, stopping the variety of seizures was now the main focus and you recommended medications, diets and alternative therapies. Andrew tried it all. Over 15 medications and alternative therapies to be exact. Once again, you directed me with all the knowledge you had available to you, and you were there to answer my questions as we introduced new treatments. As Andrew grew older, his seizures didn’t stop, but my knowledge and experience strengthened. This is when you agreed with me that LGS was Andrew’s diagnosis. You ran more tests after those medications didn’t control his seizures. You checked whether Andrew was a surgical candidate and whether the VNS would decrease or lessen his seizures. I went down any path I could just to stop the seizures and allow Andrew some freedom from the effects all those seizures have on him. I knew you were still offering your best medical tools for this difficult diagnosis. Now, as an adult, my son still seizes. Unfortunately, very little has helped him. Seizures and medication side effects have taken their toll. I have to change my views now. I have no choice. There’s life to be lived without as many medication trials. Now, what’s important? I need to ask: Is Andrew happy? Is he comfortable? Does he eat well, sleep well, is he healthy overall? Does Andrew lead a full life? Does he stay out of the hospital? Yes. Your care for now is to maintain his quality of life. Finally, please know that I chose you to be my son’s doctor. I asked around. I researched your credentials. I am desperately seeking your input, your knowledge, your expertise on how to help Andrew. That will never change. At this point I want you to hear my words, my experiences. It’s been overwhelming. My hope is that you’ll continue to treat Andrew’s future care with your knowledge, medical expertise, compassion and understanding. Who knows, maybe my views will also help in your care for Andrew, and in the care of others as well.

    Betsy Pilon

    When My Son With HIE Had His First Seizure

    Just a few days before the Christmas holiday, my 4-year-old and 8-year-old children were buzzing with excitement. They begged us to have sleepovers in each other’s rooms, and we happily obliged, seeing their joy earlier in the year during the pandemic when they were looking for new adventures in an uncertain time. My husband turned back on the video baby monitors we’ve continued to use well out of infanthood, “just in case they decide to cause shenanigans in the middle of the night.” At 5:30 a.m. just three days before Christmas, something woke us up. “Was it the dog? Was our pandemic puppy barking? If it is, I hope Mike will get her and let her out so I can get some additional uninterrupted sleep,” I thought. And, then we both heard a jarring rhythmic, clicking and gagging noise from the monitor. We both got up quickly, heading into our daughter’s room. Our son had been sleeping on the floor, his choice despite our many efforts to have him sleep in his bed, and we caught him unresponsive in the middle of a tonic-clonic seizure. Immediately, like a well-orchestrated symphony, Mike ran to get his phone to call 911, I made sure our son was on his side, as his fixed gaze turned my stomach, and I checked his breathing and vitals “…good… he’s breathing… good… he’s not turning blue… is this really happening? I need to get this on video.” I grabbed my phone as my husband whisked our 4-year-old, who had woken up thinking her brother was having hiccups, to our bedroom. I captured roughly 9 seconds, which was plenty, and continued to monitor and pray for what seemed like eternity for the seizure to stop. Shortly after it did, lasting about 2-3 minutes, I asked our son to give me a thumbs-up, and he quickly did. A few minutes later, he was able to verbalize answers to questions, and was slowly coming out of the fog. Just as he answered, three EMTs were entering my daughter’s bedroom, responding in less than five minutes to our house, as my husband threw a mask at me to put on. By the time they got him in the ambulance, our son was cracking jokes, wondering why it was so cold outside, and exclaiming how excited he was to ride in an ambulance. My heart was pounding as I climbed into the back of the ambulance, on the way to the trusted hospital that saved his life in 2012. When Max was born in 2012 with HIE, he was a kick count save, but very very ill. He was transferred to the large high-level NICU in downtown Detroit, and spent roughly three weeks there, where he, gratefully, never experienced neonatal seizures which are quite common in HIE. When we were told of the extent of injury they saw on the MRI, and long-term outcome possibilities were mentioned, we knew he was at risk for developing epilepsy. But each passing year he didn’t, and our neurologist told us this was good news and each year seizure-free meant it was less likely he would ever develop them. In my work with Hope for HIE over the last two years, I have represented the organization in several epilepsy-focused groups, despite my own child never experiencing a seizure at that point. I learned about infantile spasms and the connection to HIE, saw friends whose children were previously seizure-free develop them at ages 4, 6, 8… and I learned about seizure first aid, and the importance of capturing seizures on video for medical evaluation. The reason my husband and I were able to keep calm and succinctly implement these seizure first aid best practices, is because of the community education that comes from connecting with over 6,000 families worldwide. Currently, we are working to develop more seizure and epilepsy-related educational programs for our community. I want everyone who has to go through this terrifying experience to feel empowered and supported like we did in this most vulnerable moment for our beloved child. We don’t know what this next chapter will bring, but we know we will once again find the best ways to support our child through this new plot twist because of Hope for HIE.

    Community Voices
    Community Voices

    I see you!

    <p>I see you!</p>
    Heather Little

    When a Southwest Airlines Pilot Saw Me Struggling as My Baby Spasmed

    My daughter has tuberous sclerosis complex, neurobehavioral differences, sensory integration dysfunction and epilepsy, among other things. Life is hard for her and for myself and her older brother who love her. This disease is ruthless. And while life is hard, good people exist. I rarely ask for help from strangers, but sometimes, people see the need and give it anyway. These people are angels. One of them worked for Southwest Airlines. I was traveling across the country with my two children, who were then 2 years and 3 months. Any parent who’s traveled in an airport with babies knows this in itself is a challenge. Little did I know what lay ahead. My daughter had begun to have infantile spasms just days before our trip, though at the time I didn’t know what they were. But I knew something wasn’t right with my baby. The first time she did it, I thought it looked like newborn startle reflex. But I knew she was too old for that. They came in a rhythm, and my first thought was, “She’s seizing.” But I quickly wrote off that thought as new mother paranoia. After all, these looked nothing like any seizures I’d heard of. “Stop worrying,” I told myself. But as I tried to hold down her arms that insisted on jerking out every few seconds, I knew something wasn’t right. I was sitting in the airport with my toddler and baby girl, when the spasms started again. I felt sick, like a rock was in the pit of my stomach. I didn’t know what to do. These episodes were happening more often, my daughter would cry after they ended, and she was difficult to console. I found myself snapping at my son out of my own frustration and helplessness. I was about to board a plane with a curious toddler who wanted to run, a car seat, carry on bags and a baby making weird movements and screaming bloody murder. I prayed for some saving grace — that my daughter and son would sleep or something. And then someone stopped me before we’d even passed the first few rows of seats. The pilot said not to worry about my son, for me to find a seat with my daughter and that he would bring him back to me. I was hesitant but desperate, so I agreed. A few moments later after everyone was seated and I was rocking and nursing my daughter, I heard over the intercom, “Hi Mommy!” Everyone began laughing. I cried. The pilot had seen me struggling and let my 2-year-old (who’s obsessed with planes, by the way), sit in the cockpit, push all the buttons and speak to me over the loudspeaker. Since that time, there’s been a diagnosis, more seizures, brain surgeries and lots of therapy. Our flight was five and a half years ago, but it still sticks in my mind as a moment of grace, offered by a loving stranger to a scared mother before the battle began. It was a reminder that life is hard, but there’s beauty. And there are people who want to help. And moments of joy to sustain us on our journey. To that Southwest Airlines pilot, thank you. Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.

    Laurie Arnold

    Using Medical Marijuana for Infantile Spasms

    If all goes as planned, my daughter, Julia, will start medical marijuana on Monday. (Say that seven times fast.) Medical marijuana on Monday. This is really happening. Julia started taking anti-seizure medication when she was 7 months old, following her first seizure and diagnosis of Infantile Spasms. In the seven years since then, she’s tried 13 different pharmaceuticals and various combinations of those 13 different drugs to hold the seizures at bay. I’m not an expert on medical marijuana. If you’ve watched any of the CNN specials, you know about as much as I do. I am an expert on Julia though, and what I know is that these pharmaceuticals are hard on her. Yes, in many cases they’ve done their jobs, they’ve controlled her seizures — and for that we are blessed. But at a cost. They’ve delayed her development, they make her clumsy and agitated, and we really don’t know what they’re actually doing to her little body now and in the long run. There are no clinical trials we could find for 7-month-old babies taking varying cocktails of anti-seizure medication for seven plus years. So as parents — the only true experts on our kids — we do the best we can. And right now, in this particular case, we believe that means giving Julia marijuana. Most of the families who have preceded us in this decision to try medical marijuana have done so because other drugs haven’t worked and their child’s seizures have continued uncontrolled for hundreds a day — it’s no exaggeration. In that desperate place you will try anything, literally anything, including moving your family across the country to Colorado, knowing you won’t be able to leave once you start this drug. But you don’t care because when you watch your child seizing the only thing that matters to you is making it stop. We’re in a slightly different situation than most of the families I just described. First, we already live in Colorado. We don’t have to uproot and move to try this drug. We’re here, and it’s a fairly easy option to pursue. Second, Julia’s seizures technically are under control with pharmaceuticals. When she’s on a medication, specifically Keppra, we don’t see seizures. Last fall she had a long stretch without seizures so we decided to wean her off all medication, due to our concern for what it was doing to her body. It was great to see her off all meds — her development flourished and her agitation went down — but after two months, the seizures returned, and we realized she will have to be on something to help hold them back. We temporarily re-started the Keppra, and right away saw her agitation and frustration increase. We decided now is the time for medical marijuana. So rather than doing this because nothing else works, we’re doing this because we want to see if this works better for her. Could this be more than just a last ditch effort of desperation and instead just be a good treatment option for us to explore? I’m thankful we have the opportunity to do this. When we’ve talked about this decision with family and friends, we have received 99.9 percent positive responses. People who know our story and have watched Julia battle epilepsy respond to us with an enthusiastic “Of course!” “That makes sense!” “Why wouldn’t you try it?” These are all reasonable people who know that:1. Seizures are scary.2. Pharmaceuticals are scary.3. Pot isn’t any scarier than seizures or pharmaceuticals. To you 99.9 percent, I say thank you. Thank you for supporting us and other families in trying to find better and safer options for our kids. To you other .01 percent out there, like I said, I’m not an expert, but let me try to respond to a few of the objections I’ve heard from you: 1. Has marijuana been researched? Funny you would ask about research. Have you also asked about the research on a 7-month-old taking multiple anti-seizure medications? Have you asked about the research on a 13-month-old taking the cocktail of keppra, topomax, and sabril? How about keppra, zonegran and banzel? Keppra, valium, prednisone? What does the research say about those combos neurologists put our kids on?  What does the research tell us about the longterm effects of being on 13 different anti-seizure meds in the first seven years of life? It’s a bit of a crap shoot to be honest. Are you really concerned about research or are you just trying to block us?  Because if you really care, then I’d like you to join our cause and become an advocate for more research to be done on the effectiveness of medical marijuana and epilepsy. Start a movement, raise money, write your congressmen — you could be my hero. 2. Doesn’t marijuana slow down the brain? Well, that’s kind of exactly the point. Do you know what a seizure is? It’s a bunch of neurons in the brain pulsing too fast. Do you know what anti-seizure medicine does? It slows down the brain. So naturally any type of treatment for a brain with neurons pulsing too fast would be to slow down the neurons in the brain that are pulsing too fast. Brilliant! The balancing act comes from trying to slow down the brain enough to avoid seizing but not so much that it creates a zombie child. If what you are actually asking me is am I worried about what this drug could do to her in general? Then yes. Of course yes. And actually the question is insulting. I’m her mom. I worry about everything. I worry about her lips when they are dry, I worry about the fingernails she won’t let me trim. I worry about wrinkles in her socks, wet diapers giving her a rash at night and milk giving her gas pains. I worry about everything. Most of all lately though, I worry about her dying during a seizure. So yes, I am worried about starting a new medication — but welcome to parenthood, where every decision you make haunts you because you love your kid so flippin’ much. 3. I wouldn’t take it. Great, you don’t have to! But I don’t believe that shouldn’t be the reason you vote against it. In my opinion, you not wanting to take it isn’t an excuse for you to block other people from having that option. One day it could be you or someone you love asking for the support of the community so you can have access to a potentially life-saving treatment. You may not like people like yourself much when that day comes. 4. I don’t think teenagers should be smoking pot. Great, neither do I. But that’s a different conversation now, isn’t it? And if you can’t see that it’s a different conversation then I’m not sure I can help you. 5. I don’t want marijuana to be legalized in my state. Fine, but again, that’s a different conversation, isn’t it? If you want to clump “legalized” together with “medical treatment,” then I think you’re being ignorant — which is your choice, but your ignorance does hurt others. You will keep voting against it because you think it’s all the same. You will keep your mindset thinking it won’t ever be you on the other side. 6. Is it safe? Safe? Safe? Seriously you are asking me if this is safe? None of this is safe. We left the safety-zone seven years ago when Julia had her first seizure. Seizures aren’t safe. Don’t talk to me about safe; we don’t have that luxury. I’m guessing the .01 percent won’t even read this, but there you go anyway. That’s what I have to say to the naysayers — it felt good to get that off my chest! Back to the 99.9 percent  — thank you for being with us on this latest phase of our journey. Your support means so much. When I think about it we have so much to be thankful for right now.Thankful for Colorado.Thankful for voters who voted to approve this treatment option.Thankful for politicians I’m pretty sure I didn’t even vote for who have made this a possibility for Jules.Thankful for this little green plant that’s changing lives. Medical marijuana on Monday. Here we go. This post originally appeared on I’m Julia’s Mom. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    Strangers' Acts of Kindness Helped Me as a Special Needs Parent

    At the age of 4 months my beautiful baby girl was diagnosed with agenesis of the corpus callosum, retinal lesions, infantile spasms and developmental delays, which all together is Aicardi syndrome. Life became more challenging in an instant. Over the past 22-plus years, as I grumbled my way through crowds at the mall and cried inside at amusement parks, there has usually been someone who extended an unexpected kindness, reminding me others see my daughter’s value and recognize our family’s challenges.  Sometimes it’s as simple as stopping to say hello to Hillary, unfazed by her nonverbal answer, or opening a door as we approach pushing her wheelchair. For her last birthday we took her to a local street fair where she was showered with balloons and trinkets from vendors and community organizations there.  One time we were traveling and a woman stopped at our restaurant table to tell me what a good mother I was. It was a gesture so simple, yet so powerful and needed at the time. I still tear up when I think of it. When Hillary was 7 we were at the mall shopping in the Disney store and unbeknownst to us we were being watched. We exited the store and began walking through the mall when we heard a man calling to us. We stopped and turned around as he approached, holding out a small snow globe with Cinderella’s glass slipper inside.  He said he had been watching us in the store and Hillary had touched his heart.  The snow globe sits on her dresser where every morning and night I am reminded of how kind some strangers can be. It was around the same time that we went on a Girl Scout family trip to an amusement park.  As we were sitting on a bench with Hillary next to us while her older sister and her friends went on rides we were approached by a small group of giggling teenagers.  One of them held out a red stuffed dragon toy to Hillary and asked us if it was OK to give it to her.  It also is in her room where I see it every day. Such incidences of random kindness are kept in my memory like treasures in a box.  I examine them on those days when I need an extra reminder that there is so much good in the world. For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to celebrate the human spirit?  Like us on Facebook . And sign up for what we hope will be your favorite thing to  read at night.

    Lindsey Rios

    Letter to Mom Whose Child's Brain Was Just Described as 'Abnormal'

    When I was told that the white matter in my daughter’s brain looked abnormal when she was just 6 days old, I was devastated. I didn’t think it could get any worse, but then at 7 months old, she was diagnosed with Infantile Spasms. As tears rolled down my face, I listened to doctors ramble on, using buzz words like “diminished potential,” “catastrophic childhood epilepsy,” and “significant developmental delays.” These terms left me with more questions than answers, so each time I asked, What will life be like for Bexley? I wanted them to put those terms into concrete examples — like, Would she walk and talk? Where would her cognitive abilities fall? Would she have friends? Both times they were unable to provide the answers I wanted to hear; my mind quickly jumped from one worst case scenario to the next. Bexley is now 15 months old. We’re still trying to make sense of her diagnosis. While I still can’t answer many of those questions, here are some things that I so desperately needed to hear on those difficult days: First, take a deep breath. You’re overwhelmed and scared right now. You’re a planner, and this wasn’t part of your plan. Things like this aren’t supposed to happen to you. You took great care of yourself while pregnant and had a perfectly healthy pregnancy. You’ve just been thrown a major curveball. I can’t tell you that it won’t be hard. I can’t tell you that you won’t worry like you’ve never worried before in your life. However, I can tell you that it’s not the end of the world. Your life will still be filled with happiness, even if things are different than you had planned. Focus on the inches, not the miles. Milestones are everywhere. It will hurt when you see same-aged peers begin to surpass Bexley. It will feel like a kick in the gut when you see babies significantly younger than her begin to do things she can’t do. There are days your heart will ache because it seems so unfair that she has to work so hard to accomplish things that seem to come so naturally to other kids. However, all those feelings will disappear every time you see her do something new. I’m not just talking about the big milestones; I’m talking about the smallest little improvements in her development, like beginning to bear weight on her legs, waving “hi” to people at church or clapping for herself when you praise her. Those moments will fill your heart with a kind of joy you’ve never experienced before. The kind of joy that makes you want to jump up and down and share the good news with everyone you know. These moments will make all the hard work worth it. In those moments, you’ll also realize you have actually been given a gift because you will notice, cherish and celebrate every little improvement in her development. Inches eventually turn into miles, so focus on and celebrate the journey without wasting all your time worrying about the final destination. Your daughter has the most infectious smile and giggle. Her smile and giggle will continue to be the best medicine. On the days when you’re worried or not sure if you’re strong enough to help her face the challenges, her smile will give you all the strength and reassurance you need. When she smiles at you, you will know that no matter what the future holds, it will all be OK. When you remind yourself of these lessons, you will feel like the luckiest mom in the world to have been given such a beautiful, brave and determined little girl to take care of and love! Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .