Randi Zaila

@randi-zaila | contributor
Randi Zaila is a stay-at-home mom to five little people in Phoenix, Arizona. In addition to blogging about her fourth child’s daughter’s journey with CDKL5 and the emotional components after her death in February 2020, at SonyasStory.com, she spends her time being a chauffeur and picking up items from the floor. She also works part time as a SLP and can be found sipping on a tall glass of wine, margarita, or a large cup of coffee.
Randi Zaila

Letter to the Parent of a Child With a Rare Disease

Dear parent whose child is newly diagnosed with a rare disorder, I have debated what to say to you or your family member as you join our support page, because the reality is that you are currently seeking something to keep you continue breathing as you are embarking on this journey. You are wanting a lifeline, you are wanting something tangible, something to actually grab a hold of — you are simply wanting some hope. That is fair, we all do when we start on this journey. We search into the depths of every orifice as the journey begins to unfold and we struggle to regain our grounding as life slowly begins to move forward. It’s important to recognize that the hope you seek, well, that word itself will take on various meanings and forms throughout this journey. In my experience, hope can sometimes end up being a shot in the dark. Despite what you are considering the potential worst-case to be, the reality is, as you begin this journey you are unable to truly grasp what that even is. The worst-case will morph along this journey. You will find yourself thinking at various points that this is it, this is the worst-case, but unfortunately, at some points, things might get worse. However, what I can also tell you is that there will always be some sort of lift to help you out of the worst-case cavern you will find yourself in. Sometimes you will be stuck there for far longer than you anticipated. Sometimes you won’t even realize you were there until it is over, and at some point, when the “real” worst-case hits, you will find that you simply have to learn to just sit inside it for some time. It is just a part of life, and as much as we want to pretend these types of situations don’t exist, the reality is, they do. Despite the potential worst-case s, I implore you to try not to spend your time fixating on what they might end up being. There are so many amazing cases you didn’t know could even exist that you will also encounter. What your family has just embarked on is a journey with an ever-changing situation and ever-changing emotions, and it is a roller coaster to say the least. As you all learn to tackle the ups the downs, all you can really do is ride the waves with an open mind and open heart, and understand that your life has forever been changed. Still, I promise you, you will find a way to survive, even if at times it is simply by taking a deep breath. Sincerely,The bereaved mom of a child who was newly diagnosed five years ago

Community Voices

I knew

I knew the day would come.  I thought about it numerous times during her first year of life.  I wondered when exactly the moment would happen, how it would occur, the situation I would find myself in.  I never had a clear image of what exactly would transpire, but I knew after so many encounters that one-day things would be vastly different. I knew there would come a day when the small talk surrounding a run in encounter with a “baby” in a stroller would yield a different response than “how cute”, “oh, is she 1?”, “what’s her name?”, “she is so pretty”, “what pretty eyes”, and/or some other similar but positive and smile exchanging encounter.  I wondered at what point it would occur, always fearful of the day it would happen, but then of course forgetting about the potential on the day that it did.

After all the years of hesitant exchanges standing next to her stroller, eager to just smile along and chuckle at whatever praising remark was made, the one time that I forgot it could occur, is of course when it did.  I knew she wouldn’t be a baby forever, I knew she wouldn’t be tiny forever, G-d knows she has enough tubes and medical interventions erasing the Failure to Thrive diagnosis as we speak.  I was never naive enough to think that she would always get positive head turns, but in the end, maybe I was.  I knew once she was bigger she would get noticed for her hand stereotypies and her abnormal flexibility.  I knew people would start to realize she wasn’t a baby, but in the majority of ways, she really still is, and ironically the phrase “look at the pretty baby” that used to make me grit my teeth because she wasn’t a baby, I wish would return.

I knew her growing up would eventually happen, but I didn’t expect for the day to occur while walking down 68th Street in New York City.  I knew one day someone would act in a way that hurt me to my core, but I didn’t expect it to be a man walking a cute Yorkie named PJ, who (I can only assume) had zero intention to break a mother’s heart while he was out walking his friendly dog.  I knew one day it would be completely obvious that the little girl in the stroller with splatter colored framed glasses and a customized pacifier clip was not actually a baby, but I didn’t expect the silence after responding to the question about her age to be so deafening and feel like an eternity was passing by.  I knew one day there would be no words to fill the awkwardness that filled the air.  Yet the thing about preparing for the future with a diagnosis like CDKL5 is that there really is no way you can, because no matter how many dress rehearsals you have; when the curtains lift and you find yourself center stage, it is never exactly how you anticipated it to occur.

1 person is talking about this
Community Voices

Thoughts from a medically complex mom

I get it, trust me I do.  I get it more than a large majority of the average population and I get it on a very specific level.  Doctors are not always right.  I would say without having taken exact statistics over the past 3 years 11.5 months that being right sits around 50% for medical professionals when it comes to Sonzee.  Ironically in a lot of our personal dealings, it is usually them who are presenting the more optimistic route and sharing the more “typical”.

Since day one I was the one fighting for them to look deeper into my “mom’s intuition”.  It was me who was begging to be heard that “something wasn’t right”.  I had to fight so many times until she was 4 weeks old and had video EEG proof that my baby was not part of the “babies do weird things” movement.  The journey has been exhausting from the very beginning.

We did every possible typical testing that was provided to a pregnant woman while I was pregnant.  My husband and I had done genetic testing ourselves prior to having children when we were having difficulty conceiving in the first place.  My motto the entire time was always “I would never do anything, but I NEED to know”.  My husband’s motto was, “Since we aren’t doing anything, what is the point?”

When it comes to my pregnancy with my medically complex daughter, I have reviewed the memories with a fine tooth comb.  “You have a perfectly healthy baby” the NICU team even told me during her last two days before she was discharged home.  I asked multiple times about the questionable eye movements and her shaking limbs.  I mentioned it again at her well visit appointments when she was 12 days old and again around 3 weeks.  It was during week 4-5 that we learned she was having seizures.  It was during week 8 that we learned she was diagnosed with CDKL5.  It has been 3 years 11 months and 18 days since we have been living with the life of a child diagnosed with CDKL5.

Sure there are inchstones.  YES, we make the best lemonade there is to offer.   Are there amazing teachable moments that our family has experienced?  100%.  Will my children grow up “more compassionate, more loving, more understanding?”  Sure, and maybe it will have been because of our medically complex daughter, but maybe it would have happened regardless?  We are part of an elite club, one that we are so thankful there actually is, but one I personally wish I never knew even existed.  I wish my other children would not have to know the harsh realities of what life with a medically complex and disabled child really means.  I wish they did not have to know what it is like to see their parents come and go in the middle of the night with babysitters, neighbors, or family members running over at all hours of the night while their parents and sister leave for the hospital.  I wish my children didn’t have to see flashing lights outside their house or be comforted by the amazing team as their sister was being loaded into the back of an ambulance.  I wish my children didn’t have strangers come into their home every day who they know by “nurse xyz” and who they are used to seeing.  I wish I lived more nights at home than I have at 1919 E Thomas Road on the 8th floor.

We never knew while I was pregnant what was or would mean.  We could never have fathomed what life would have looked like.  Even if a doctor had told us that string of characters and we would have googled we probably would have relied on the extremely rare minority of children who are physically much more able than our medically complex daughter.  Maybe we would have prayed and felt that G-d was giving us what we could handle.  Maybe we would have felt hope that the test was wrong and that the doctors did not know what they were talking about.  Maybe we would have decided to live the same life we currently are.

The unknown becoming your reality taints your world.  There is only so much heartache you can ask yourself to take when it comes to literally watching your child suffer.  I can rationalize her smirks and occasional happier demeanor to meaning her life is content, and that she “doesn’t know any differently”.  The reality is she seizes multiple times a day, for minutes on ends, every single day of her life.  The reality is she is unable to hold her head up well, to sit unassisted, to walk, to see clearly.  She is unable to take care of herself by herself and no matter what potential genetic modifier comes her way, she most likely never will.  She will never be able to use her voice or really explain to me what is hurting her or how she is feeling.  She won’t ever go on a date, get married and have children.  She will never be a typical and functioning member of society.

When we are faced with difficult decisions, I asked both of us one question, “Do you want to live the life she is living?”

I know there are stories of children thriving after a doctor told their parents they never would, but there are also children who are not.  There are parents who were faced with a horrible situation and they made a choice to say “yes, I want to live the life no matter how difficult it may be”.  Then there are parents who made the choice not to live that life.  To those parents, I do not judge you.   No one should be judging you.  Your decision to take the baby you longed for and choose not to let suffer should not be looked down upon.  To the parents who didn’t get offered a choice and are not living up to the challenges presented and maybe they are living up to them but feel they can’t do this, or do not want to do this, I assure you, you aren’t alone, and you should not be being judged.

Before we had our medically complex daughter I would personally not have had an abortion, but I never judged anyone who would.  After having her, with both the pregnancies that followed, I needed to know if the baby would have or any similar disorder.  I didn’t know in certain terms what we would do if the testing revealed he/she did have the diagnosis.  What I did know is that after raising our medically complex daughter, and watching her have to endure what she does on a daily basis, I would find it selfish for me to allow that life for another child.

Medical professionals are not perfect, they are mom’s and dad’s, they are just ordinary people who wake up every day and go to work and do the best they can.  They are presenting the facts the best that they know how with the information they have at that moment in their hands.  You have a right to disagree with them, you also have a right to agree, and no one should tell you which answer is right for you.  Maybe you could call me weak, awful, or non-inspirational from this point forward, but really there is no room for judgment even if you live this life, even if you made a choice one way or another.

I love my medically complex daughter with my entire being, as much as I do my other children, as much as any mother can love a child, but I would never wish her another moment of pain or potential suffering and I would never wish the life of having a mutation on another child.

Randi Zaila

To the Parent Whose Child Has Been Diagnosed With a Rare Disease

Welcome. Today is the first of many days that your heart will simultaneously break and be put back together at the same time. After all, when you agreed to the testing that has led you to this moment you may not have really expect for the results to bring you here, to this point, an answer. An answer that will undoubtedly leave you with more questions than you even know to ask and one that will never actually bring you any real type of closure. Whether you have reached this point while your child is still in-utero, hours, days, weeks or years old, those of us who are already on this journey may become your best friends. We have all worn a similar pair of shoes and while our children may not have the same diagnosis or the same presentation of the same condition, we all get it in a way that others will never be able to. No matter how far along we all may be on our own individual journey. I can assure you, some of us still grieve at various times and even if we look put together, we continue to take our turns falling apart. While I wish I could offer you a way to heal your now broken heart, that will only come with time and in ways you aren’t capable of grasping today. Today is the beginning of your new journey, please try to wade through the waters slowly, and at your own pace. The waves will come crashing at you and you may feel like you are drowning, be sure to grasp onto that life line even if it leaves just your nose and mouth out of the water. Take deep slow breaths and remind yourself that nothing has changed since the moment you were actually told there was a reason for what your child has been going through. My new friend, what I want you to know is that no matter how much time continues to pass from this day, the emotions may remain raw and triggering moments will catch you off guard and always when you least expect them to do so.  You will welcome new parents into this club more than you would prefer, and each time it will be a moment mixed with excitement and sadness. You will want to tell them everything you have learned since you first stood in their place, but you will remember back to that exact time and you will take a deep breath and just tell them to contact you when they are ready. One of the most important lessons I have been taught on this journey is that some things we all have to learn on our own and at our own pace, but eventually we all learn it.  There is no right or wrong way to sift through the cobwebs you have found yourself tangled in, so find a good circle of support, grab multiple boxes of tissues, and tell yourself that you will survive. It may not be easy, but “the greater your storm, the brighter the rainbow” — original author unknown. Sincerely,A mom to a child who was diagnosed three years, four months and 11 days ago.

Randi Zaila

Letter to Parents of Children With Life-Limiting Conditions

Dear parents who have a child with a life-limiting disorder, I know you are afraid. You dreamed about this child long before he or she was born, and those dreams did not involve a rare disorder. Now you have found yourself parenting in uncharted waters, unsure of how your child’s particular story is going to end, but knowing in the deep recesses of your soul it most likely will end before yours. Not everyone will understand, not even every parent who has a child with the same diagnosis as yours, but that is OK. Your fears are real, and the thoughts you have are understandable. I know this is scary. Each day you wake up wondering if today will be your child’s first time completing a long overdue inch-stone, or the last time he or she will make an attempt. You do everything you can throughout the day to ensure that if tomorrow does not occur, you did the best that you could, hoping that it will maybe prevent the inevitable guilt you will most likely feel when eventually tomorrow does not come. When the day comes to a close, you secretly wonder if this will be your last time you will both take part in their bedtime routine. You kiss your child goodnight and give an extra squeeze — you just never know. I know this is lonely. The subject remains taboo. You fight within yourself whenever one of these negative thoughts pop into your mind. Others will tell you “not to think like this” and that “it’s not healthy,” so you are left to wonder if you are the only one who thinks about these things. You are afraid to talk about death and your child in the same sentence openly, not wanting to be silenced by those who might disagree with your feelings or be misunderstood by those who really have no idea. Sometimes, you might feel a sense of entrapment, suffocation, and uncertainty. I know this is your life, so do your best to make the most of every situation. If you have other children, then I believe these thoughts in the back of your mind will inevitably make you a better parent. You are not alone with  your thoughts, because I am someone who gets it. I am someone who thinks these thoughts. I am someone who lives this journey along with you, and I am someone who will be here when your reality becomes real.

Randi Zaila

Time Is Like a Game of Tug-of-War When Your Child Has Epilepsy

Before you become a parent, you are continuously told, “time goes by so fast,” “cherish every moment,” “before you know it, your children will be out of the house,” and so many other phrases that insinuate life is about to move a whole lot quicker. You smile and nod at everyone who tells you these phrases, and you might even think you understand what this means, but then your child is born, and your comprehension of those words and phrases take on a whole new meaning. From the second your child is born, you are instantly placed into a lifelong game of tug of war with time, wishing time would speed up, yet simultaneously begging for it to slow down. When your child has epilepsy, all the above takes on a whole new meaning. That moment you witness your child’s first seizure, or the moments following the realization that what you just witnessed was your child’s first seizure, the concept of time takes on an entirely new meaning. Seconds have never felt so long, yet by the time the next seizure occurs you wonder how time flew by so quickly. There is now a new version of tug of war, this time it is wishing time would fly by faster so a seizure could end, but then praying time would stand still so you never have to experience those moments ever again. Yet just like with everything else, the clock does not slow down, it does not stop, it just continues to tic on by. If your child has epilepsy secondary to a life-limiting diagnosis, the tug of war with time takes on another shift. Your life revolves around time and an unspoken ticking clock that only you are aware of, one that can make you cling to every aspect of the seconds going by, no matter how good or bad they are spent. You prefer for them to be spent with your child experiencing more happy moments versus moments filled with seizures or other medical complexities, but yet you will take any and all moments you are gifted with him/her. Living life with a child who has epilepsy makes a person appreciative of time. Never knowing what each second holds, you learn to accept whatever comes your way. You soak up every second, hoping and praying it won’t be the last, but with the fear of the unknown, and realistic potential of that occurring keeping you on guard and in the moment. You do your best to always be in the moment, but try not to be frozen by it. You anticipate the next seizure while trying not to live in a constant state of fear or panic. One of the hardest parts of living life with a child who has epilepsy is learning the balance of holding onto time, while also trusting enough to let it pass by.

Randi Zaila

What Do People Mean When They Say, 'For as Long as the Baby Is Healthy

During my most recent pregnancy (as well as all the others) when people asked me, “Do you know what you are having?” or “is the baby a boy or a girl?” it was typically followed with, “just as long as it is healthy.” I would nod my head in agreement because, what else are you supposed to say? It could get awkward really quickly if the next words spoken were, “What if the baby is not?” Yet honestly, what if it’s not? I have been wondering recently what exactly a person means when they say those words. I can assume each person who makes the comment has a different reason as to why they have said those words, but really, what do they mean? Personally, after having a child who ended up under the category of “not healthy,” I can tell you I am not offended by the phrase itself; but during this last pregnancy, the words took on a new meaning. I am not ashamed to admit that I said “as long as he is healthy” to anyone who asked me the gender question. I know in a way that not every mother does what it means when your child falls under the not healthy category. I have lived in a hospital, my house is filled with medical supplies and equipment, my children excitedly yell every time we drive by Phoenix Children’s Hospital, I have watched my child endure too many medical procedures, countless daily seizures and I have had to play the “what happens if she doesn’t make it this time” scenario in my head more times than I can count. While some experiences of parenting are worth repeating, these are not ones I want to do with another child. No one asks for “not healthy,” but sometimes that is just the card that gets played. I do not love my daughter any differently than I do any of my other children, but I also would never want to watch another child go through what she does. I carry the burden of literally making life and/or death decisions on her behalf, and it is often times too much to handle. When strangers said, “as long as the baby is healthy,” my mind would of course turn to my daughter. Her almost three years have been filled with a mixture of joyous occasions and challenges, tears and smiles, fear and hope, missed milestones and completed inchstones. It has been a roller coaster of emotions and events all along the way. Still I wonder when someone says “as long as the baby is healthy” what if the baby is not? We want to hear your story. Become a Mighty contributor here . Getty image by tatyana_tomsickova

Randi Zaila

Lessons Learned From My Daughter's 28-Day Hospitalization for CDKL5

Our daughter was diagnosed with a rare genetic disorder, CDKL5, when she was only 8 weeks old.  This was preceded by a weeklong NICU stay immediately after birth and seizures that were diagnosed when she was 4 weeks old. We as a family have endured multiple tough moments during her 20 months of life so far, however, nothing was more eye opening than the lessons I learned after her 28 days in the hospital when she was 15 months old. She was solely breastfed from birth until we transitioned her to a bottle in order to receive a special ketogenic diet for her seizures; whatever she was unable to eat by mouth we fed into her stomach directly via her g-tube. No matter how much we tried to feed her, she was unable to keep anything down. Finally I hit my breaking point and brought her to the ER. When our daughter was admitted to the hospital, she was already marked as Failure to Thrive due to not gaining weight or growing at all from the time she was 6 months old. It was a scary time, not knowing if we would find and fix the problem. The doctors could not tell us when they anticipated her to be discharged.  As the hours turned into days, and the days into weeks, a cloud of darkness haunted my brain, and I began to wonder, “Is she going to come home? There is nothing scarier, nothing more real, and nothing more humbling than being faced with the reality that the baby you checked into the hospital might not be coming home with you. There are times on this journey where I am reminded that I have no control in my daughter’s fate; I am simply here to help her complete her purpose. This is a challenging concept to accept as a parent, however, I consider myself lucky to have found myself in this situation. I watched my daughter receive potassium, phosphorous, albumen, and blood transfusions.  Her stomach was deemed unusable and her intestines could not handle her nutrition goals. She was placed on total parenteral nutrition (TPN) via a central line that emptied near her heart. Her body swelled from water retention and she received diuretics multiple times. Knowing how close my daughter was to not being physically here with us has made me learn to truly appreciate every moment we have with her. I have learned to understand what it means to “not sweat the small stuff.” I learned I do not have time for petty inconsequential things because they honestly do not matter. I continue to have an inner battle in my mind over wanting her to be “typical” and meet milestones, but to be honest, I am just appreciative when she wakes up each morning. While I will always be haunted by the experience and limbo of her 28 days in the hospital, I believe that without them, I would not be able to put life in perspective. We want to hear your story. Become a Mighty contributor here .

Randi Zaila

To the Special Needs Parent Who Feels They're Not Doing Enough

Dear special needs parent, Maybe you just saw a picture of a child younger than yours achieving a milestone you dream of your child reaching. Your mind fills with a multitude of thoughts; you begin to question your efforts as a parent. The doubt fogs your mind and you can no longer see clearly. You ask yourself, “Am I doing enough?” Let me reassure you: You are doing enough. Maybe you are at home with your child wanting to help him/her, but you have no formal training in any specific therapy. You question what you are doing, and wonder if it’s exactly what you were shown by his/her therapist. You wish there were a class you could take to make you any and all types of therapists as soon as possible. You are doing enough. Maybe you are not a trained medical professional, yet you must become an expert in various domains. You rely on neurologists, cardiologists, ophthalmologists, surgeons, nephrologists, orthopedists, GI doctors, etc. as guidance to make life-altering decisions, and wonder about the future of your child and family. You are doing enough. Maybe you have other children or are pregnant with another child, and you worry they’re not getting what they need, because you can’t be everything to everyone all the time. You may have a significant otheror spouse, and wish you had more time to devote to each other. Your friendships are changing and you are left feeling alone. You are doing enough. Maybe your life is consumed with all things related to your child. You feel guilty. You hardly sleep anymore. You don’t remember the last time you went a day without saying the name of your child’sdiagnosis, if you know it, or his/her list of symptoms if you don’t. You are doing enough. You have done enough that your child is able to do the skills he or she has already mastered. You have done enough that over time, your child will accomplish more than others may have thought possible. You have done enough in those many hours working with your child when the therapists aren’t around. You have done enough by mastering medical jargon you had no idea existed a short while ago. You are an exceptional parent, spouse, significant other, caregiver, and friend for being able to juggle all the balls that have been thrown at you. There may be days along this journey that are dark and gloomy and fill your mind with doubts. Your path will not always be clear. However, take it from another special needs parent: no one is perfect, no one can do it better, and you, my friend, are doing enough. Follow this journey on Sonya’s Story or on Facebook.  

Randi Zaila

CDKL5 Genetic Disorder: What I Wish I Knew When My Child Was Diagnosed

In less than two weeks, we will be celebrating the one-year anniversary of our daughter’s diagnosis day. When she was 8 weeks old, after a month of being officially diagnosed with epilepsy, we learned the cause of her seizures was due to a genetic mutation known as CDKL5 (a rare genetic disorder that results in difficult to control early onset seizures and severe to profound developmental delays). In honor of this day, I would like to share a list of the eight things I wish I knew when my daughter was initially diagnosed with a rare disorder. 1. You will need time to grieve. Grief is not solely reserved for those who have physically buried a child. While you have not lost your child to death, you have lost the “healthy child” you anticipated you would have. It takes time to come fully to terms with your child’s diagnosis. Do not rush the process. Even a year after the diagnosis, there are still days that result in grief. Grief over the past, grief over the present and grief over the future life your child may lead. Grief comes in waves and you should not expect to just “get over it.” It is OK. Allow yourself time to grieve over the expectations you had prior to the “finality” of the diagnosis. 2. Do not be consumed by your grief. While it is more than appropriate to grieve, it is important not to let that grief overshadow the physical presence of your child. You never know how long your child will be here on this earth and you don’t want to waste your precious time with him/her missing out on the joys of parenthood that do exist. Live each day with as close to zero regrets as possible, so if God forbid you have to say goodbye sooner than you anticipated, you will not look back and say, “I wish I…” 3. Having your child receive his/her diagnosis at an early age will not necessarily change the outcome. Randi’s daughter sitting in her car seat. Not everyone is “fortunate” enough to have his or her child diagnosed when he/she is 8 weeks old. We thought for sure that our daughter being the youngest child diagnosed with CDKL5 would mean that she would surpass the other children in the ages she would attain developmental milestones. We thought since we had so many parents giving us advice regarding what they would have done had their child received their diagnosis early, that our daughter would be able to accomplish more and avoid more of the hurdles. In the end, you can be as “prepared” as humanly possible, you can think you can outsmart the disorder, but when your child has a rare disorder, the rare disorder will still run its course. 4. Having a diagnosis will give you closure in one sense, but will also leave you with doubts regarding the future. You will hear many times that “At least you know,” or “You are so lucky your child was diagnosed at such a young age.” This is true on one hand, as you have a support group available, you have a “projected route for your child’s journey”, and now all the symptoms your child displays make sense. On the other hand, you are seeing first-hand the ugly side of the diagnosis. You will witness the struggles that potentially lie in your child’s future. You will see babies and young children die along the way. You are seeing a glimpse into the potential life your child will lead. You can no longer hide yourself from the facts. You are no longer able to be blissfully ignorant. This can leave you feeling sad and defeated. It is OK. Take it all in and know that every child is different. Your child will write his or her own story and follow her own path. Just follow their lead. 5. You are not a failure. There will come times following your child’s diagnosis that you will look at other children and see their accomplishments and feel like it is your fault your child has not accomplished the same milestones. All children develop individually at their own speed and have their own unique strengths. What your child can and cannot do is not a reflection of how much time, energy, effort and love you are pouring into your child. 6. Do not judge the parents who have older children with your child’s diagnosis. When you look at children who are older with the same diagnosis as your child, your thoughts may wander to, “Well, if they knew early on, then they would have been able to do this and that by now.” You may think enrolling your child in every therapy imaginable will make all the difference. Keep in mind that all those children were babies themselves and their parents did what you are doing now, and they will always do right by their child as you will do for yours. Just because you do not see their child meeting milestones does not mean these parents are not working with their child every day. 7. Lean on the parents of other children with your child’s diagnosis for support and guidance. They will be your best tool. If you are as lucky as we have been to have an amazingly active and supportive online community that has children with your child’s diagnosis, become part of it. Immerse yourself, make friends and get to know the other children and parents. They will be there in your time of need. They get it. They will lift you up when you are down, they will sing praises when your child excels. No one knows what you are going through better than fellow parents. No matter what part of the journey each parent is on, each mom and dad will welcome you into their lives as if you are family, because you now are. 8. Trust your parenting gut. You will spend a lot of time in and out of doctors’ offices and hospitals. You will find professionals who have your child’s best interest at heart and others who will not. Regardless, no one is a better judge of what is going on with your child than you! Trust your intuition and trust your knowledge. You know more about your child than any doctor does. Always go with your gut! Follow this journey on Sonya’s Story or on Facebook. The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.