Dear Mr. President…my dad was fired for having Parkinson’s

A thing we have learned on this journey, is that a disease affects the whole family and to not listen and validate our children’s voices would be ill-advised.

Children’s words are often uncomplicated and simplistic.

Our eldest daughter came down the stairs a year ago, handed me a letter and declared “I need you to mail this.”

The White House Pennsylvania Avenue Washington, DC

The White House
Pennsylvania Avenue
Washington, DC

I hesitated…… my brain unable to process what was happening…… came to… and said yes.

I opened it.

"He dint do anything wrong."

“He dint do anything wrong.”

Read and re-read it.

Wept for her reality.

He Didn't Do Anything Wrong

He Didn’t Do Anything Wrong

Drove to the post office

and as I slipped it in the mail slot, I felt overwhelmed by her ability not only to articulate but to EXPECT change.

Because as a family we stand together, united to speak out, proud and leaning forward for those with disabilities that aren’t treated fairly.  It’s NOT enough to just wish Don to get better but, as a unified group, we have to BE better and foster change.

Libby did receive a response back from The President.

I think she felt she was heard.

Her truth was hard to handle but the real truth of being fired because you have a disease is a blinding reality for too many people in our community.

We will affect change.


21 thoughts on “Dear Mr. President…my dad was fired for having Parkinson’s

  1. Perfect letter Libby! It’s sad to think a 9 year old has to write a letter like that but it’s also pretty cool that she did write that letter. It shows the change that’s going on for Parkinson’s. If we all keep up this advocacy good things should happen. We have a 15 month old granddaughter. The other day I saw her wave to her Papi because she thought he was waving to her but actually he was just watching her and it was the tremor in his left hand. I could see it in her eyes as she stopped when she realized he wasn’t really waving. Already she’s noticing…..I hope she grows up to be a great girl like Libby, standing up for those afflicted with Parkinson’s.

    • Your granddaughter and her Papi! So sweet and touches my heart directly! Thanks for sharing such a real story. Our families are different but because they are, we will make a difference! Thank you for your support and kind words about Libby. Together, we will change the face of Parkinson’s for all of our children and grandchildren!

  2. Thank you for publishing this. My husband, Rob is now 66 and was diagnosed when he was only 42. His kids were only 3 months, 2 and 5 at the time. It is super important for you to be upfront with your kids about Parkinson’s and what it means. It might seem hard sometimes to tell them the truth but hiding the truth is worse. It makes kids worry more and it denies the reality that you are all facing.
    Your little girl is tough. Keep encouraging her to be tough and to speak out. We all need to put Parkinson’s out there so the whole world notices and works to find a cure and to support the people who live with it every day.
    Libby, your dad did everything right.

    • Thank you for sharing and your support! In the beginning we tried very hard to shelter the kids but you are 100 % right, the kids worry and deserve the truth . In the long run we know they will become more compassionate. The journey is long but along the way we will make change. My best to you and your family!

  3. If your husband really was fired for having Parkinson’s Disease, that’s illegal. Contact the US Equal Employment Opportunity Commission in your region. They will likely be able to help.

  4. I would like to know the POTUS’s response if you wouldn’t mind sharing. I’d like to know how he addressed the issue. It is so hard to watch someone you love decline when you know what the outcome will be and that there is nothing you can do to stop it , I know, I’m doing it now. I’m sorry your child has to do that at such a young age.My prayer for you is that God will bless you and your family and you will have your needs met.

  5. I too was fired for having Parkinson’s but before leaving my job behind I was required to sign an agreement that prevented me from suing…why did i sign? The termination was sudden and unexpected but they offered a smallish severence package that we desparately needed at the time. Also the company was down-sizing and being taken over which provided enough camouflage to hide behind (enough rugs to sweep me under). How do I evidence that this was not just sour grapes on my part? Two weeks after I agreed to the severence package, my manager sent me the trophy for being “Number One” in my department for the entire year…ouch.

    There is so much more to the machinations of the corporate world than meets the eye. Besides which the rights we have and how we can be made legally whole seem almost irrelevant in the face of dealing with the emotional and physical challenges of in incurable, progressive disease.

  6. Great post. Very touching. Yesterday I re-blogged a Mother’s Day post I wrote last year about my mom, who also has PD. It’s been a long road. I have some unique perspectives on this disorder, because I’m a neurologist.

  7. Exactly how I feel about my husbands Parkinson’s. His only fault was going to Vietnam Nam to fight in the jungle. Our country sprayed deadly chemicals and caused by their own admission this horrible disease to come upon him. Bad enough, he already had been diagnosed with Alzheimer’s dementia, but this too, two years later.

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