The Hardest and Most Beautiful Years of My Life: Raising a Medically Fragile Child

My journey raising a medically fragile child the last eleven years has been the most challenging and rewarding period of my life. It was undeniably the hardest time and yet most fulfilling time of my life. I lost the life I envisioned, the relationships I expected, and the son I thought I would have. I faced financial difficulties, marital issues, loss of identity, a crisis of faith, debilitating depression, low self-worth, diminished self-esteem, and battled suicidal thoughts. This era was marked by pain, struggle, loss, grief, and trauma, yet it was also filled with love, growth, wisdom, beauty, laughter, strength, and a new perspective on life.

It changed me. I would never be the same again. I experienced many joyful moments, underwent personal growth, and discovered courage and strength I never knew possible for myself. I embraced a spiritual practice that brings me peace and the resilience to move forward. I developed a relationship with God and found an understanding that resonated with me. We all have what we were taught as kids but it's something different to find it for yourself.

I've gone through moments of immense joy and times of deep despair. These years have truly been the best and hardest times of my life. They have shaped me into the woman I am today.

As a 38-year-old woman, I have become the strongest version of myself and the most healed I've ever been. It was the fight of my life to reach this point, but it was entirely worth it. I am finally here, and it feels amazing. Healing requires a lot of work and sacrifice, but it has given me something I wouldn't trade. I am still learning and growing, and that's a beautiful thing because that means I am still here. The best thing about aging is you can grow into the person you were always meant to be!

After my son's devastating diagnosis at 3 months old, and at my young age of 27, I grappled with severe depression and anxiety. It was the kind of depression that leaves you collapsed on the bathroom floor, disconnects you from relationships, prevents you from living your life, and makes it difficult to become your best self. The kind that makes you see a stranger in the mirror, makes it hard to enjoy things you once loved, and leaves you frozen in time—robbing you of your identity and leaving you feeling lost and hopeless.

I have watched my son's health decline, taking little pieces of him and, as well, pieces of me. Watching from the front lines as Canavan's disease takes pieces of my son's life from him. This pain is beyond any words I can express. For those who know this pain, you have my utmost respect. Carrying it with you is hard. Its debilitating. At times it can leave you feeling paralyzed.

After spending years of Jax's life in hospital rooms, at doctor appointments, with therapists, and caring for him 24/7, I started to feel run down and exhausted. I couldn't live this way forever... Something had to change. After reflecting on this time in my life, I realized I wasn't supposed to remain that version of myself forever. It was a season of my life.

For a while, I felt as though I lost years of my life to depression. It was time to start living again. It was time to feel good, to heal, to grow, and to have fun. I know now those were some of my greatest learning years, and I will be forever grateful for what they have taught me. I also had some of the best times of my life during those years. I wouldn't be who I am today and definitely wouldn't be able to write this blog without them.

I want to use what I've lived through to bring light, love, and God's work into the world by helping, serving, and connecting with others who are facing struggles of their own.

My personal journey really started when I began a healing and wellness journey for myself. After the loss of my daughter in 2020, I was cracked open once again. This time, I knew I needed professional help. I had hit a new bottom in my life; one I had never reached before—and that's saying a lot given everything I had already been through. This time, I felt as though I had been shoved off a cliff and dropped into the depths of life.

My self-worth and self-esteem had taken a devastating hit. Feeling completely inadequate, I convinced myself that my husband didn't love me anymore. I believed I was no longer loved, lovable, or enough. I believed this to my core.

The loss of my daughter finally pushed me to get the help I had needed so badly for so many years. She was my angel; she gave me exactly what I needed at that time in my life. This was the start of my journey—my journey for myself. I needed to discover who I was again and learn to love myself in the way I should have all those years. When I found myself again, I discovered a much stronger, wiser, and more compassionate woman.

One of the greatest things we can do for ourselves is search for a silver lining in the hardships we endure. My silver lining in losing my daughter was that, in many ways, she saved me. She pushed me to get the help I needed, forgive the people I needed to forgive, and begin my healing journey.

2021 was one of the hardest and most challenging year of my life. I had to walk through fire. I faced a complete identity crisis, possibly even a midlife crisis. I felt like I had gotten my life all wrong, and I didn't know who I was anymore. Grief had consumed me for so many years that I felt lost. Somewhere along the way, I had forgotten to take care of myself, love myself, and give myself the support I needed. I was left feeling as though life and motherhood were just about pain.

I was desperate for attention, love, and to feel seen. I was hustling for approval and trying desperately to be noticed by my husband. There's nothing less sexy than desperate energy, but in all that hustling and desperation, something amazing happened: I started to find myself again. I found a pieces of me that had been missing for a very long time.

Initially, I looked for my worth in the outside world. I chased external successes through things like work, fitness, and achievements. Those things can be an important and fulfilling part of life, but they aren't the gravy. I was still struggling with fear and anxiety. Something inside me was still missing.

It wasn't until a couple of years later that I came to realize true happiness comes from within—it's an inside job! Once you begin to understand that everything else starts to fall into place. You begin healing and growing in ways you couldn't have imagined. Can you imagine living a life where you truly know your self-worth and love yourself? I do now, and it's amazing. I wish that for everyone.

I had to walk through fire to get where I am, but it was worth it. I encourage anyone who is struggling, no matter what they're facing, to get the help they need. That may look different for everyone. Life comes with suffering, and all of us will struggle. Maybe we can help make it a little less painful for one another.

Each year, I do a little more healing and a little more living. I am finally living a life that feels worth living, and it feels amazing. My wish is that everyone can find that for themselves.

I started this blog to help others, but I didn't realize the person I was helping the most was myself.

On this journey, I found who I was—and who I wasn't.

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