Lynda Coto

@lynda-coto | contributor
Lynda Coto has a degree in nursing. She is a blogger and Social Media Coordinator/Contributor for SNAPVoices.  She has four children and has been married for eight years. Her youngest child is 3 years old. Shortly after birth she was diagnosed with rare diseases, suffered a stroke and seizures. As a result of her stroke, she is partially blind, has developmental delays and has autism spectrum disorder. Lynda stays home to care for her full time.
Lynda Coto

The February Day That Makes Me Proud to Be the Mom of a Child With Rare Diseases

Traditionally, February has always been one of my least favorite months of the year. Let’s face it: in February the weather stinks, daylight saving time doesn’t begin for over a month and summer seems far off into another atmosphere, despite the fact that bathing suits are already hanging in department stores. Three years ago, shortly after my daughter’s birth, she was diagnosed with mosaic Beckwith-Weidemann syndrome, trisomy 12 mosaicism and hyperinsulinism. Three very rare diseases caused a rare event to occur, and my perspective on February changed. In addition to learning about my daughter’s rare diseases and prognosis, I found myself taking a crash course on the purpose of awareness days, specifically Rare Disease Day, held every year on the last day in February. To my surprise, it was a big “to do.” I learned that thousands of events take place across numerous countries every year. I studied up on how rare disease organizations strive to raise awareness and how they serve as advocates for people affected by rare diseases. I took time to educate myself on the organizations’ contributions to the advancement of national policies for rare diseases. Then, I paused for quite a while. Lynda and her daughter I took time to speak to other parents whose children’s lives were affected by a rare disease, and this is where the real learning took place. I learned that for many parents, the last day in February is a day on which they stand on common ground to connect with others who face similar fears — a secure and safe place to relate. For some parents, this day represents their search for answers or a definitive diagnosis, a search which for many started the day their child was born. For most, it is about the fight toward a cure for their child’s disease. For others, it’s about the anguish of having to settle with the unknown. And still for other parents, this day serves as a memorial for their angel who looks down on them from above. I’ve learned that, for all of us, this last day in February serves to bring awareness to what our children experience daily. It serves to shed light on the passion and tenacityour children possess. To spread the news of the courage our little ones have to push through each and every day. To inform others of the trauma many of our kids have endured. To bring attention to the grief parents feel when we are unable to alleviate our child’s agony. This day serves to facilitate conversations about a parent’s fear of the threat of losing a child or the anger and grief when receiving a diagnosis. Then I paused again and took a long look at myself, my husband and my daughter and have slowly learned what Rare Disease Day means for us. For me, the last day in February is an important one, a day I’ve fallen in love with. It serves as a reminder that we are in the company of an elite group of parents and children who have redefined what living life to the fullest means. It’s a day I celebrate being a different kind of parent and living a different daily “normal.” It’s a reminder to me that my husband, daughter and I, as a family, represent strength, resilience and perseverance. It’s a day that makes me proud to call myself her mom. Lynda with her husband and daughter The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

Lynda Coto

6 Things I Wish I’d Known About Recovering From Emotional Trauma

As we pass our daughter’s November birthday, we also pass the anniversary of her near-death experience. The events which followed that experience overshadowed what was supposed to be a joyous time, leaving an everlasting mark on our lives. For the last three years, the holiday season has served as a time to reflect on all the events, good and bad, which have shaped me into the parent I am today. With each year that passes my memory of some details fade. I suppose this is one gift of time fleeting away. However, one wish remains constant and intensifies with time. I wish someone would have talked to me about recovering from emotional trauma. I wish someone would have prepared me for what lied ahead. As our daughter moved through a complicated hospital stay filled with life support equipment, convoluted diagnoses and major surgery, I knew recovery was going to be a process. What I didn’t know is that her physical recovery was just one aspect of this new course our lives were on. What I didn’t know is that our progress was going to be painstakingly slow. Just like anyone who’s been blindsided with an intense and life-altering event, it was going to take some time for my husband and me to recover. The initial ordeal was quick, intense and traumatic. My awareness and recollections of this disaster still, at times, leave me feeling alone. While this doesn’t really surprise me, the bombshell of experiencing an identity crisis was a shock. And one question still lingers: how much longer is this recovery process going to take? 1. I was caught off guard. Of course the events we experienced were an unexpected shock. There was no time for postpartum recovery, bonding or even a moment to truly experience being a new mother again. I was caught off guard by how unprepared I was, after spending months preparing for this birth. Although I knew there was nothing I could have done to prevent this from happening, I was unexpectedly hit by self-interrogating questions of what I could have done differently. I could have never anticipated the feeling of powerlessness and loss of control I felt. Although I was in an acutely fragile state, the element that took me by surprise was my strength. I unexpectedly found the relentless, strong-willed, determined and tenacious person whom I had tucked away only a few years prior. By rediscovering the very person, whom many had considered flawed, I tapped into an unshakable strength I never knew existed within myself. 2. I needed time for reflection. Once we arrived back home, I found myself feeling lousy. I was filled with an awful level of confusion. I was met with an unforeseen feeling of emotional numbness and felt spiritually disjointed. I quietly experienced flashbacks and uncomfortable moments of emotions flooding my mind. I didn’t expect to experience these things with such intensity. Had I known that what I was going through was normal and productive, would I have fought it so hard? By allowing myself ample time to reflect, I stumbled upon acceptance. I never predicted that by allowing myself to look back on our experiences I would one day make sense of everything and finally feel comfortable enough to stop asking the question, “Why?” 3. I had to allow myself to grieve. This life-altering event was abounding in negative experiences. But someone hit the delete button on some good moments and milestones I would’ve otherwise experienced had this not happened. This was a lot to digest, and I never realized how much time I would need to grieve. There wasn’t one person around who was ever going to give me permission to be an emotional mess. I didn’t immediately catch on to the fact that it was OK to feel and experience my emotions; the depression, fear, distress and outrage. It was only when I felt the intense longing to hear someone tell me it was OK to fall apart that I finally give myself permission to do so. It was then that I accepted my emotions and began to move through the pain of loss. It was also then that I understood this was simply another step toward finding my new normal. Although this process has, at times, presented itself as unwanted change, in its reveal it’s been a transformation in the way I understand and exist in the world. I was unaware that three years later I would still long for my postpartum time back, would still be yearning to have another chance at bonding with my infant. Despite these feelings, I’ve found new meaning in my present and future. 4. I would see how other people cope with crisis. I wish I could have anticipated the challenges during the first year after her surgery. As the complexity of our daughter’s care grew, so did the list of expectations of loved ones. During a time when we were struggling to hold ourselves together emotionally, pressure to meet the needs of family set in. A certain level of awkwardness existed when I needed to talk about our daughter’s complexity of care. The few people I chose to talk to offered only blank stares and emotional vacancy.  I instantly felt others’ need for me to repress and disassociate myself from the trauma. I quickly recognized this wasn’t personal but simply how some cope with crisis, and I wasn’t judging. While these coping mechanisms might be appropriate for them, they were unsuitable for me. I could have never predicted the courage it would take to turn down a preferred way of coping and wrestle this experience in my own way, even if it meant being considered an outsider and being rejected. Fair-weathers came and went and, as fate would have it, many others arrived to indulge with gentleness, compassion and grace. I’ve enjoyed many of our oldest friends rising to the occasion and providing some of the greatest support. I’ve grown to accept this as an opportunity to create new relationships with others who’ve had similar experiences. 5. I needed to take one step at a time. Sometimes I wonder how so much time has passed and how little headway I’ve made in this process, but then I look at where I was two years ago. I wish someone would have told me the first year was about survival. I wish I would have had a flowchart exhibiting step one as: “Finding Safety and Security.” I didn’t realize at the onset, but our lives were unexpectedly undergoing a drastic restructure. Everything that was once familiar to me swiftly required reevaluation and readjusting. Jobs, family, friends, routine, money, how I saw myself — like it or not, I was getting a total overhaul. I’ve come to realize this overhaul is leading me to finding a new meaning in this life. This reformation has changed me. I’ve become a better wife and mother as result of this journey. I’ve been granted a new and better understanding of who I am. 6. I would socially reconnect when I was ready. We arrived home exhausted– mentally, emotionally and physically enervated. I felt a craving to make up for lost time with my child who was barricaded behind a bedrail for two months. I needed to spend time looking at her fingers and toes, smelling her scent, lying with her on my bare skin. I had to devote time to establishing a new normal. I had no choice but to acknowledge and accept my need to experience the transition period I was immersed in before I could begin to truly reconnect with others. It might have taken almost three years, but when the time was right, I didn’t feel coerced or manipulated. It felt good to enjoy time with the people who have supported me.

Lynda Coto

Mom Responds to Stranger Who Judged Her Child's Leash

When I first saw you behind me, I smiled. We stood near each other in line for security at the airport. I had just finished loading the last of three bins onto the X-ray belt when I looked up to find you scornfully staring at my child. The blistering look you gave me didn’t go unnoticed, either. For a second, I thought maybe you were just having a bad day, but then I overheard the comments you made to your friend. I heard you tell her I’m a lazy parent. I also heard you say that people, such as me, shouldn’t have children. I heard you ramble off a list of things you would do differently. I overheard your entire conversation. Based off what you saw, I don’t blame you for having said what you did. I understand where you were coming from. It’s nice to know you were feeling protective over my child. After all, you saw a cute 2-year-old brunette with big brown eyes, jumping, laughing and having fun with her tether strapped onto her back. I agree with you; children don’t belong on leashes, and I often feel as if I’m not good enough to raise such a beautiful child. Not that you would have cared, but I wish I could have shared with you a few things that weren’t so obvious at that moment. I wish I could have talked to you about what you couldn’t see. The little girl you saw in the airport isn’t your “typical” child. I know she looks “normal” on the outside, but on the inside, she’s special. What you didn’t see is that my child is partially blind. As a newborn, she suffered a stroke. Her brain injury has caused her to have a very difficult time in public places. What wasn’t apparent is the noise in public places, such as an airport, can be very distressing and overwhelming for her, often causing her to run away. What wasn’t so obvious is she has difficulty seeing and listening at the same time, not because she is unruly, but because she can’t divide her attention between sight and sound. What you didn’t see is that she has difficulty walking, often tripping and falling down. What I wanted to tell you is I tried your stroller idea, but she started to lose muscle tone from lack of exercise. I really wanted to talk about the daily struggle to keep her safe, but before I could address your concerns, you walked off to catch your flight. You see, the day I left our developmental pediatrician’s office to buy my daughter’s new accessory, I knew you and I would meet one day. I knew what you thought of me long before I heard your spoken words. I knew you would talk about me and disagree with my parenting choices. What I didn’t know is how bad your words would hurt. I didn’t know that something as silly as an opinion would pierce through my heart every time I secured the tether onto my child. I still think about you. But now, when I recall our encounter, I am filled with gratefulness. Thank you for causing me to recognize how strong of a woman I am. Thank you for shining a light on the lengths I will go to ensure my child’s safety, even if it means taking one for the team. Thank you for helping me understanding that in moments of pain, I can find happiness in my daughter’s smile and sound of her laughter just as I did that day in the line of security. Follow this journey on A Beautifully Messy Life. The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. 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. Check out our Submit a Story page for more about our submission guidelines.