I am going to deviate from my norm for this blog of all things financial and talk about life – real life, not an Instagram World or a world of selfies and posed pictures or a life that is staged to look all perfect and wonderful. No, this is the real world with all the bumps, bruises, and imperfections that go along with it. Don’t misconstrue my message. I am not complaining but rather telling you how I live in the real world. Along with this message, let me also express that I know I am blessed and feel so fortunate to have such an amazing and devoted wife and the most wonderful and beautiful daughter that a dad could ever dream of having. But, again, all of this is real. So, this blog is more a look into my real life, my life behind Budgetdog with its blogs, Twitter and Instagram, and all of my podcasts. This is about my real life as a dad to my daughter who is turning one and the journey she has taken us on over the last months.
First, I want to say Happy Birthday to my precious baby who turned one on September 4th. What a joy she is and what a worry at the same time. Some of you who know me intimately, know that prior to January 29, 2022, our lives were better than we could ever have imagined or dreamed of financially, emotionally, and personally. Of course, we had some ups and downs and some bumps like everyone, such as car and appliance repairs and other “normal” life things. But nothing earth shattering or devastating. For that, we were lucky and had worked hard to achieve it.
Then on January 29, 2022, our whole world was turned upside down and inside out to the point that it is still raw and surreal. On that day, our seemingly healthy baby suffered her first seizure. It is beyond an understatement to say that it devastated us. Imagine my horror when Erin, my wife, came running hysterically into the room where I was preparing to make a company presentation, shaking and saying that something was terribly wrong with our baby. As most who suffer some type of shocking event or trauma, I still can remember every minute detail from that experience and relive it over and over in slow motion.
After arriving at the emergency room and having Logan evaluated, we were reassured that babies having seizures is not that uncommon and were discharged. We left the hospital, feeling somewhat better but still frightened only to return by ambulance exactly twenty-four hours later with another seizure. We kept wondering if this too was “normal” as our minds were a whirlwind of incoherent and jumbled thoughts. In one day’s time, our lives changed forever.
That became our first of many hospital stays, lasting four days but providing few answers. Questions plagued us. Finally, after a battery of tests, they were ready to dismiss us with little information other than things seemed to be okay. As we were preparing to leave, a doctor came back in, telling us they noticed something on the EEGs that did not seem “right.” What did that even mean? We were sickened by so many medical terms, so many questions, and so many incoherent thoughts that we were trying to absorb.
Since that fateful day, we have had too many ambulance runs to the ER and too many hospital stays. Eight full months into the year, our total hospital bills have soared past $150,000! We know too many of the amazing nurses in the Neurology unit at Cincinnati Children’s Hospital and the EMTs who all seem to know the drill all too well when they get the familiar calls to our house.
We have also finally learned, through a series of wonderful and oddly strange events that have opened doors and have put us in touch with the right doctors, that Logan has Dravet Syndrome. In one fell swoop, our daughter who appeared to be perfectly healthy was diagnosed with this rare syndrome that affects one in every 15,700 children. Like all syndromes, it presents itself differently in each child. Some children have mild and even few seizures, complications, and side effects, but others have many severe seizures and complications including lags or regression in mental and physical development and even death in extreme cases which is about 15 to 20% of those diagnosed with Dravet Syndrome. There is currently no cure for Dravet Syndrome. There is active research in the field given doctors are aware precisely the gene that is the main cause (SCN1A). We are hopeful with time that a miracle surfaces. What about Logan? We have so many questions and no answers or guarantees. But isn’t that all part of living in the real world?
It is not only the diagnosis and the unknown that make life so difficult, but for children like Logan and the families, it is the minute-by-minute worries rather than the day-to-day struggles that are difficult to handle and absorb. For us, life with Logan is like living with a ticking bomb. Daily life is arduous. Typically life with a baby, a child, or children is hectic and busy. We would gladly welcome that. That was what we were expecting. Instead, we are always living under the shadow of another seizure which leads to more complications and problems.
Logan comes with a long list of dos and don’ts that amount to our daily tasks being overwhelming as they consume our time and energy. Some of our struggles with Logan which are the same with other children with Dravet Syndrome are that she can’t get overheated or have rapid changes of temperatures, overstimulated or overexcited, or overtired or sick. That eliminates so many things such as going outside, even for a simple walk in the stroller on most days. Photosensitivity is a trigger for some with Dravet Syndrome, so we err on the side of caution and try to keep Logan out of the sun too much, vying for shade whenever possible. If she is out in the sun, she has to have her eyes shielded. Try keeping sunglasses on a baby! It is almost impossible, but mandatory. Water is another trigger due to the overstimulation and temperature change. Obviously, going to a pool is out, but it also makes bathtime a worry. For most babies, bathtime is such a fun time. But for us, it is a time when we have to be guarded and alert. The water has to be carefully regulated, and we can’t allow her to get overstimulated or over excited. So, a seemingly fun and easy daily routine for us is one that is filled with trepidation. In addition, for the average parent, a missed nap leaves them with a cranky baby. For us, it is catastrophic and one that almost always leads to a nasty seizure. Each nap and sleep session has to be carefully calculated to ensure that she is getting enough sleep throughout the day and night. Unfortunately, Logan is not able to relax enough to allow herself to fall asleep and stay asleep. We have spent countless hours trying to remedy this, including working with sleep specialists. She sleeps in a SlumberPod when we can’t be home that resembles a tent or in our pitch black bedroom closet always with white noise all in an attempt – and often a futile one at that – to help her get some sleep. In addition, during any time when she is sleeping, Logan is hooked up to a variety of monitors including one that detects rapid movements that would indicate a seizure, an oxygen monitor to allow us to be alerted if she stops breathing, and a sound and visual monitor to help us watch her as she sleeps – or tries to sleep.
Daily life and normal routines are a worry. Every activity of every day must be carefully checked. As mentioned, Logan and those like her don’t regulate excitement and stress like other children and people. This overstimulation includes but is not limited to sounds, different movements, and quick motions. Just dropping something which makes a louder than normal sound or a flash of light is a worry. Even sitting on the floor playing with her is different than it is for most babies and children. We are ALWAYS watching and asking ourselves if her movement was a normal jerk or twitch or if it was a myoclonic seizure. We are constantly assessing whether she can keep playing or whether we need to pick her up and try to calm her to prevent a seizure. There are so many triggers for her seizures, but they are all such a part of everyday life that most people don’t even give them a thought or a glance. For each of these events, we hold our breaths and prepare ourselves for another seizure, rescue meds, and the chaos that ensues after.
Furthermore, excitement and exciting things are a fundamental and normal part of development and growth for all of us. Our constant struggle is how to help her grow and develop, learning new things and experiencing life and all of its wonder and beauty while at the same time, eliminating the triggers. With each new phase and discovery, we brace ourselves as we await a sleeping dragon to rear its ugly head in the form of a seizure. We live our lives in a state of hypervigilance in order to safeguard Logan from the many triggers that plague her. Because of this, we have had to isolate ourselves and Logan. We can’t go out, have missed many family events, and rarely are even able to see our immediate families. This also means they are not able to see Logan or engage with her. But it is not about us. We all know it is about Logan.
Logan’s constant monitoring is a reality; it is our responsibility and our lives. The more we can lessen the seizures, the better it is for Logan. Watching your child go through something like this is beyond words. It is crushing. Being able to stay home with Logan has been a blessing. Budgetdog has enabled me to be there with her to monitor as many of the activities and situations as possible. If it had not been for that, one of us would have had to quit a “day job” to stay home. I can’t imagine trying to handle the stress of a financial worry on top of all of the anxiety we already have. But that is where we are, and we count those blessings.
So, today and each day, we celebrate Logan where she is, and we know that she is perfect no matter what her perfect looks like. We are deeply committed to providing the best possible care we can for her including the most up-to-date and effective medicines and therapies available. We have immersed ourselves in learning everything we can about Dravet Syndrome and are trying to bring awareness about this syndrome to everyone we can. In one short year, Logan has totally changed our lives. This is real. It is not always pretty or easy, but it is life as it is.
For parents, there is no way to imagine loving a child anymore than you do. Parents love their children unconditionally, wholeheartedly, and purely to a level that is like no other love. Logan has taught us in this first year, how to be totally selfless and more appreciative for all of the blessings in life as well as how not to take anything for granted. Living in the real world with . Logan is unimaginably challenging but so remarkably rewarding and incredible. We know how blessed we are to be the parents of such an amazing daughter.
Happy Birthday to my baby girl. We pray that we can celebrate many more birthdays and cherish each moment of your life. We also pray for all of the parents and children impacted by Dravet Syndrome and other syndromes like this. It is our mission to find cures to help all of the Logans out there.
For more information about Dravet Syndrome and the research that is being done, check out https://dravetfoundation.org/.
I do not usually do this, but if you can…please share this blog and help us bring awareness to this very rare disease! You can tag me on all social medias. Thank you from the bottom of my heart!