A Letter From Amanda – After 9 Months

Finally, a real letter from Amanda arrived yesterday. It was a genuine one from her, the first in a year’s time. It was mostly about Mom and Dad and how much she misses them. I understand. I feel connected to Dad all the time, but particularly at this time of year. He died in 2013 the day before Easter. I got some purple tulips at the store the other day. Tulips are Dad’s favorite flower. Purple is Amanda’s favorite color.


Tulips have now become kind of a big deal for us. Following Dad’s funeral, Amanda and I got our brother’s new wife (she was his girlfriend then) a pot of yellow tulips and put them in the window of our motel room. We were waiting to give them to her, the next time we saw her. During that time, the petals fell off. By the time we delivered the pot of tulips all that was left were stems. But, oh well. The bulbs were still in there.

In her angular, etch-a-sketch handwriting, Amanda mourned for Mom and Dad. Why do people have to die? She still thinks of them, she says, night and day. My heart aches for her. I am wondering if the guardian is doing anything to address this, other than to try to distract her from her grief. Does he even know how to address it? There is no way he can directly relate, since he didn’t know the daily habits of home. I worry about whether he is able to comfort her, since he is preventing me from doing so.


She goes on to say, “I wish that they were here with me for this month on my birthday.”

Amanda’s birthday was in September.

She doesn’t date her letters, so maybe I wasn’t supposed to notice that there was a 7 month delay before this was mailed.

I wonder how many other times she wrote to me, and they were never sent?

She would have written this shortly after being taken back to Arizona. She spent the summer here and we never had our “Girl’s Day Out.”

She addressed that too. She wrote, “Miss Girl’s Day Out.”

She ended with a word of encouragement. “Don’t give up. Be yourself.”



Amanda is my sister, an adult with Down syndrome. She is being held by her guardian who has not allowed contact since I last spoke with her on July 27, 2016. I have filed a petition and the hearing is scheduled for May 2. I am asking for this guardianship to be amended, giving Amanda the freedom to contact her friends and family members.

“I’m the guardian and you’re not.” That’s the reason her guardian gave when he refused Amanda’s request to visit me in summer 2016.

A few warning signals of guardianship abuse:

1. The guardian and/or conservator treats you as an outsider instead of a relative, friend, or loved one.

2. The guardian/conservator sees to it that your loved one doesn’t have a phone.

3. When you visit, the guardian “hovers” or even employs someone to hover so you’re not alone with your loved one.

4. You are denied input about your loved one’s care – the doctor won’t talk to you – you are shut out.

5. The guardian/conservator refuses to take your call or answer your questions.

6. Your loved one doesn’t get his/her mail.

7. If your loved one is in a nursing home, you’re only allowed to visit in the dining room or recreation room.

8. You start seeing questionable documents and realize financial accounts are closed or changed and the statements have been diverted to the guardian/conservator.

9. You discover the taxes haven’t been paid — or even filed.

10. The nursing facility tells you when you visit, you “upset” your family member or upset the staff.

11. Items are missing from your loved one’s home.

12. Your loved one appears to be more sluggish, perhaps even dazed.

The days of guardians running the show are coming to an end. There is help available.  Click the link below:


About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
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