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

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.

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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