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I Spoke Out in School. Now I Speak Up for My Son's Neurofibromatosis.

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I am very loud. Some people might even say that I am obnoxious.

Although I’m less crude now than I was 10 years ago, I still am not always the perfect lady. I was in trouble a lot in school, mostly for talking. I talk — a lot.

I tend to be outspoken, I’m honest to a fault and I stand up for what I believe in. No matter how many times I tried to hold my tongue and not point out when something is wrong, I couldn’t.

I spent a lot of time in the hallway during class. I mean, a lot. I used to just sit and wonder “Why? Why am I like this? Why can I not control myself? Why?” I never figured out an an answer, but continued to attempt to “do better.”

We received the diagnosis of neurofibromatosis type 1 (NF1) in April 2016. My son Owen was just about to turn one. Everybody was shocked, but I was not. I had already spent many nights curled up researching all of Owen’s symptoms. NF came up nine times out of 10.

I knew he had it.

The last year-and-a-half has been a blur. We spent a lot of it in the hospital. As most NF parents know, that’s just how it is in most cases. MRIs, specialists, drug trials, appointment after appointment after appointment. It’s never-ending.

My toddler has a medical team. A team! A team of 10 or so specialists who cooperate together and know every little detail about my son. I have a nurse practitioner who sometimes pronounces my name right.

My youngest child is strong and brave. I cannot take away any pain or affliction he endures. I so wish I could. The only thing I can do is advocate for him.

I now know why I am the way I am. I needed to be this way — for Owen. God knew I would need that backbone and loud mouth to stand up to doctors and fight for my son. So. Many. Doctors. To educate people every chance I have. Stand up when I believe that more needs to be done and speak up when I believe something is being overlooked.

That is why I have always been loud and obnoxious.

Because I must be heard. My son counts on it.

photo of family holding child with neurofibromatosis

LaShannon Spencer and her family are actively involved in the fight to end NF in honor of their NF hero, Owen. 

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Originally published: August 16, 2017
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