My Son Was Born With Tuberous Sclerosis – Now What?

Next week marks four years from when I first shared my son’s diagnosis with the world. As we approach this milestone, the emotion I felt around this time weighs on me. Remembering the anxiety and late-night consultations with Dr. Google, just trying to figure out what is happening to my newborn and wrapping my head around what to expect. As I sit here, preparing for another major surgery, I feel these raw emotions crashing down again like a ton of bricks.

While we are definitely a little more settled in what to expect, every day brings new news, new challenges, and new victories. I try to document as much as possible and, occasionally, I reflect on what was written back then versus what life is like for us today. Here’s an excerpt from that post I wrote in 2015:


He has brain tumors.

He has heart tumors.

He has skin abnormalities.

He has seizures.

My baby is fighting a battle that I have never even heard of before.

He will be a fighter of TSC for the remainder of his life.

It’s been one month since he was diagnosed. Right now our focus is on seizure control. He does everything any other four-month-old can do, including his new ability to roll over (as of last night!), but he also faces a lifetime of uncertainty. With this disease, no two cases are alike. The snowflake disease, if you will.

No predictions.

No percentages.

No facts.

No guesses.

No cure.

I can handle the constant doctors’ appointments and daily doses of medication. I can handle the unknown and the emotions that come with fearing the worst for your child. I can handle the constant worry of questioning if he is simply moving around or if he is having a seizure. I can handle the missed sleep. I can handle working extra hours to provide for his medical care. I can handle being away from my family while I care for him with a team of doctors.

I can do this hard stuff.

I really can.

I may just need a little help.


This still gives me chills. I had no idea that writing the details of what physically surrounded me in my emotional state would bring back such powerful emotions; almost as if I can actually relive the moment all over again.

Looking back, and being able to feel the way that I do about my old written words, I now want to encourage parents to write it all down. And I don’t mean sharing the diagnosis; I mean sharing your triumphs with paper and pen so that you can look back on a day when you need something positive and read your feelings. Reflect on the good days. Share your happiness. Go back and read everything. Emote. Get it all down on paper so that it’s no longer bound to you.

Sharing his diagnosis and admitting that I needed help was the beginning of a really beautiful time in my life. People rallied for us. I received help and support in ways that I had never expected. I highly suggest sharing the struggles that your child faces with those you trust (or with the whole world, as I did) and explaining that you may have days that are extra hard for you. People cannot be compassionate if they don’t know that compassion is necessary. Admit defeat when needed; your allies will appear.

It’s strange to think that there was ever a time in my life when visiting specialists and knowing the ins and outs of this disease didn’t exist. Funny, I happen to be writing this while sitting in the waiting room of the hospital. This place feels like home now. It’s hard to believe that these walls were once foreign to me.

After four years, I can now say that having a child with special needs and daily medication and endless struggles have been the most heartbreakingly beautiful experience of my life. I never knew how much love I could offer others until I became a mother to a child who faced lifelong adversity. And after all this time and all that I have learned, I really just want the world to know one thing; I was right all along.

I can do this hard stuff.

I really can.

I may just need a little help.


Grace’s unique journey has inspired her to speak from the heart, sharing her struggles and strengths. She is a domestic violence survivor and single mom of four, her youngest living with Tuberous Sclerosis. Despite these hardships, Grace always manages to find positivity and humor in life’s everyday challenges. When she’s not writing engaging and oh-so-relatable columns for The UpBeat, you can find her snuggling with her babies or constructing something fabulous with either a sewing machine or massive amounts of dough and a pie pan. 

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