Mothers Come in Many Forms.

You do not have to have children to be a mother. 

Recently, I got to meet an incredible woman.  Her name is Amy.  She has Huntington’s disease.

If you aren’t familiar with Huntington’s disease (HD) it is a neuro-degenerative (brain shrinking) genetic disorder that leads to mental and behavioral symptoms.  Things like, jerky, uncontrollable body movements, mind-numbing anxiety, and a decline in thinking, reasoning, memory, and judgment (Amy refers to this as “crazy thoughts”).

Sadly, there is no cure.

Amy’s mother also has HD.  She suffers from psychosis symptoms (shrinkage of the brain).  For TEN whole years she suffered without a diagnosis.  She would tell Amy thinks like - the FBI was following her, or that her car was poisoning her - that sort of thing.   Amy knew why this was happening, but her mother was in denial.  Her mother just couldn’t fathom the fact that she may actually have Huntington’s disease.  It just wasn’t mentally possible.

Amy ended up having to admit her mother to a psyche ward.  A devastatingly painful act that will always stay with her. 

In 2010, Amy took it upon herself to go get tested.  She wasn’t showing any symptoms, she just thought it might encourage her mother to get tested.  Amy’s uncle has HD and her aunt recently passed away due to HD symptoms, weighing 71 lbs.  As they say “it runs in the family”.

Amy tested positive.  And her mother was diagnosed 2 years later.

She now knows that the FBI isn’t following her. She is aware of her illness.  She was able to come back home!!  This is all Amy wanted. She wanted her mother to get medical help. She wanted her to understand what was happening to her.

But, Amy wasn’t ready to face her own fears.  She was so focused on helping her mother, that she hadn’t thought about her own future.

Amy was diagnosed with HD at a rating that indicates that she will suffer from the symptoms of this disease sometime in her early 40’s.  She’s 31 now.  Her “symptom-less” days are limited.  

But, Amy remains positive. 

She has signed up to be a guinea pig with UCSF, in hopes to help others through medical research.  She has been the ambassador for the Huntington’s walk to raise awareness.  She focuses on taking care of her mom and other people in her family. “It’s the Italian way” she says.  She has been a mother figure to so many in her family - her mother, her aunt, her uncle, her niece, and others. 

Without Amy, her mother wouldn't take her medication when she is supposed to. She would miss doctors appointments.  She wouldn't have someone to hug her and comfort her when she is scared or anxious. And more importantly, she wouldn't have someone to hold her hand and stand by her side.

"That's all I can do" Amy says.

Amy cries inside when she thinks about not having a "mom" anymore.  She wants nothing more than to take her pain away.

Amy is the mom now.  Her mother is the child.

But the love between them is still just as strong.

She doesn’t want this for her own children one day. She doesn’t want her children to suffer with this disease. She doesn’t want them to watch her suffer. She doesn't want them to have to take care of her. She doesn't want them to be without a mother. 

In 2014 she had a hysterectomy. She made the decision to not have children.

Permanently.

This decision didn't come easy for her and her husband, but having children is not their fate. And they are okay with that.  Her husband stands by her every step of the way. He knew she had the disease before marrying her.  True love at it's finest!  He admires the "warrior" that Amy is and is inspired by her.  He follows her lead, and stays positive and hopeful.

I asked her if she had any regrets. Any guilt? Any sadness? 

But surprisingly, the answer was no. None! Although she really wanted children, she is content.

The reason is simple...

Amy has and continues to “mother” so many people in her life.  Her mom, her aunt, her niece, etc.  The feeling of wanting to be a mom has been filled.  She doesn’t have guilt or regrets. She doesn't worry about what lies ahead. She just focuses on taking care of her family and helping doctors find a cure.  

Amy made me really think about what the word "Mother" really means. I have never thought about this word so deeply...

A mother is someone who gives hugs when we need them.

It's someone who is patient and understanding even when we are wrong.  It's someone who does the best that they can to help us through hardships. It's someone who stands by us and helps ease our pain. It's someone who believes in us, and loves us unconditionally. It's someone who leads by example and encourages us.

There are mothers all around us,

Amy is right, she is already a mother, and a role model to us all.

Thank you for sharing your story Amy. From the bottom of my heart.