“‘Your son will have severe developmental disabilities.’ Those are the words I’ll never forget hearing from the doctor we had recently met, as our 6-week old son lay in a hospital bed right next to us, all hooked up. I was crushed. Not just by the news, but also by the way it was presented. 6 months prior to Isaiah being born, my brother, Chase, passed away. It was an unimaginable loss, as he was my very best friend. Chase had disabilities. To those not fully aware of all he could do, those disabilities were ‘severe.’ Also prior to having Isaiah, just months after our first son was born, I had left my career of almost 10 years in Special Education, in which I taught and supported individuals with intellectual and developmental disabilities across several settings. My brother was the reason I had chosen the career I did.
I grew up with an amazing brother with disabilities, chose a career working with many incredible individuals with varying disabilities, and now I was hearing my son was going to have his own medical complexities and developmental delays. This time, I was in a different role and it hit at a much deeper level with it being my own child.
Our older son, James, is just 13 months older and all the ideas and plans I was dreaming up were instantly changed. Now they may not be running around together, wrestling and playing like I naturally thought they would. I didn’t know exactly what the future would look like, but based on her prognosis, it would look much different than I had originally thought. There is one thing that has been there from the start and that is the immense love between my boys. I was the older sibling to a younger brother with special needs and now my oldest is in the same role. And at only 3 years old, it’s a role he shines in. He adores his little brother and Isaiah shares in that adoration. The picture may be different, but it’s still a beautiful picture.
The doctor that my husband and I sat in that hospital room with gave us a diagnosis, a rather grim one, and a depiction of how life would probably look. She was the same doctor who, less than a week prior, had completely brushed off the movements I was sharing. Having some experience with seizures in the past with my own brother, my gut was telling me that’s what we were seeing. Not that I wanted to believe my brand new baby was having seizures and I know new babies can make weird movements, but I knew that’s what it was. Yet, she didn’t seem to think so.
4 days before Isaiah turned 1 month old, he had his first seizure. He had several more over the next few days but it was hard to get on video. So based on our description, it didn’t appear to her to be what we thought it was. The outpatient EEG she still thankfully ordered quickly proved to us he had a very abnormal brain wave pattern. The doctor that immediately limited my son also said his condition was significant enough to need treatment elsewhere.
While I had wished the initial events had unfolded differently, I am thankful she helped get us to the right place, which happened to be a Level 4 Epilepsy Center. This epilepsy center was also a part of the same hospital where my brother had received his treatments for leukemia both months and years prior and the same place where he had passed away. The place where doctors did all they could to save my brother was the same place that would try and save my son.
I certainly didn’t know the importance of this type of center at the time, with it being a specialized epilepsy center, but I’m so grateful we did not waste much time in getting there. The Epileptologists and other specialists we have worked with since have been great, and rather than placing limits on him, they still work with us offering new treatment options and medications in an effort to stop or at least lessen the number of seizures he has and calm his very chaotic brain.
A few months after being diagnosed with generalized epilepsy, Isaiah was diagnosed with a rare, catastrophic form of childhood epilepsy, called Infantile Spasms. The thought of knowing my son has anything with ‘catastrophic’ in the description is just that: catastrophic. It is gut-wrenching and the most helpless feeling, watching your child have seizure after seizure and knowing there is physically nothing you can do to fix it or make it better. Knowing the damage each subtle spasm was having on his brain was heartbreaking, too.
Isaiah is young and may not be able to understand or articulate all that’s happening to him but he is strong. He is so, so strong. The strength I see Isaiah display daily is what gives me strength as well. That and most importantly, strength from the Lord. We wouldn’t be where we are today without Him and I am so thankful for His love. The strength I see in Isaiah is the same I saw in my brother. It’s like there’s this beautiful piece of my brother in him. He is paving his own way, yet has the same spirit, determination, and heart. I couldn’t love it more.
The inability to gain control of Isaiah’s Infantile Spasms and the chaotic brain wave pattern associated has been very detrimental to his development and has impacted his health as well. But it’s certainly not for lack of trying. We gave Isaiah twice-daily injections for almost 4 months, one of the frontline medications for Infantile Spasms, in an attempt to stop them and calm his brain. He’s tried six additional seizure medications, as well as the ketogenic diet. We’ve had periods where we’ve seen fewer spasms, but we’ve unfortunately never had full control nor has his chaotic brain calmed enough. It’s our reality, and to say it stinks is an understatement.
The impact on his health has also been significant. In less than 2 years, we’ve had 13 hospital stays, 21 EEGs, five ambulance rides, numerous visits to the Emergency Department, and too many specialist and pediatrician visits to count. He’s spent one of his Christmases in the hospital, as well as James’ second birthday. Isaiah is unable to eat anything by mouth, so he is completely tube fed since he does not have a safe and effective swallow. He is almost 2 years old and is not yet able to hold his head up independently. He has severe muscular weakness and does not independently reach for or hold items or move much on his own. He also has a visual impairment as a result of his neurological impairment. All of these needs and more and we do not have a specific genetic cause or diagnosed condition. Extensive tests have been conducted too and we’ve been left with no exact answer. He’s just one of a kind.
There is a much longer list of conditions and delays that follows Isaiah, but not one of them defines him. And they won’t ever define him. He is still working to learn some basic skills that infants gain naturally as they grow, yet he’s also teaching others as he learns himself. To me, he is a great example of what it looks like to never give up. There are some times his medical needs are too extensive to work on specific developmental goals, so we just have to take a break. Then when he’s ready, we start to work again. He always lets us know when he’s ready.
I do not fully know all of what Isaiah will or will not learn and be able to do, but that only makes the skills he does learn even more special. We celebrate all of the victories, regardless of how big or small. He is always worth celebrating. And with that, I also have an increased appreciation for all the amazing devices and equipment that are available. These pieces will help give him the independence he deserves while also providing the level of support he needs. He was recently in a stander for the first time and it was an incredible experience. Seeing him have a new view of the world in a way that fully and safely supported him was the best. And judging by the huge smile on his face, I know he loved it too. We will not stop exploring ways to provide experiences like this for him. He deserves all of them and more.
I have two amazing little boys and they both deserve to be celebrated, for their worth to be shared and for the world to see how special they are. They may learn differently, they definitely have different strengths, different abilities, and different needs, but they are both so special, so unique and so loved. Isaiah’s needs just may require more continuous attention and extensive support and that’s okay. I do pray as James grows he will want to share about Isaiah and advocate for him too. Isaiah needs us to be a voice for him. I already have a feeling his brother will value that need just as much as I do now.
This journey isn’t always easy. We have had many scary moments, from uncontrolled seizures that have lasted over 2 hours and didn’t respond to rescue medications, to respiratory events that have left him needing extensive interventions and other medical events we couldn’t totally explain, among many others. But we have also had so many beautiful and unforgettable moments too. They certainly seem to outweigh the hard times. I now have an even greater appreciation for the ‘little things.’ Each smile is priceless, especially when it’s directed right to us. The eye contact I missed for many months and his signature expressive eyebrows that raise when he’s being spoken to brighten all types of days. Each step, regardless of how small, in a positive direction means so much.
God’s plans for Isaiah’s life are much bigger than I could ever imagine. I love being able to experience it all firsthand and watch it all unfold. He is teaching me more than I could ever teach him but that doesn’t mean we will ever stop trying to learn. He has that never give up attitude, so I need to make sure I have the same. I promise to be his voice, his encourager, his advocate, and his biggest fan. They are all easy roles anyway. We hope along the way we also spread more joy, encourage others, and raise awareness, especially for epilepsy. Those are all very important to us too.
If you find yourself on a similar journey, hang in there. You will find strength you may have otherwise never known you had. Trust your instincts and know you can always make your voice heard. Have faith and stay hopeful, it can be scary but it’s a beautiful journey too.”
This story was submitted to Love What Matters by Brittni Evans from Clayton, NC. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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