“Andyman” and his “Baba”

We still live in an open-faced sandwich. Though my Mother died April 19th, there are three grandparents left out of six. And Andy, thank goodness, is healthy as a horse. I look at my open-faced sandwich a little differently now. More on that another day.

I had two regrets – or things I wish I had done – when my Mommy died:

  1. I wish I had been able to join her in the community choir she sang in for a few years. We both sang in our youth – Mom in groups for high school and college, me in the church choir and for countless brides. But we never sang together. As I sat next to her bed those last four days, signing silly songs that I made up, I wished for that.
  2. I wish I had taken Andy over to see Mom, one more time, before she was no longer able to talk with us. Or, even then. The last time Andy saw his Baba was 2 months before she died. Ryan was able to have a quality time with her. And should have too. I was remiss.

And today, I live the consequences of #2.

Monday we went to visit Dad, Andy and I. It was a holiday and Rex was, of

"Andyman" and his "Baba"

"Andyman" and his "Baba"

course, at work. This is a typical activity for me with Andy on holidays. Dad had just hung the photo my brother created for Mom’s memorial service and wanted to show it to me.

When we arrived, Daddy made sure I knew that he had placed the Diet Coke in the fridge just the way I told him to so Andy would find it. I promised him that he had “done good,” and that I was sure we’d be going to test it out soon. And we did. It was there. Just like always.

But Andy knew something was different. With each typical activity, he twirled the way he does when we buy new furniture or move things about. He knew.

We drank our pop, watched his favorite video, and then, we headed for home to make dinner. Except for the twirling, I didn’t note anything out of the ordinary.

That evening, Andy was looking at the knick knacks on the shelves in my bedroom. But nothing different really – except some twirling.

This morning, Andy was hanging out on our bed as is part of the morning routine. I went in to give him a hug and kiss before hopping in the shower. He directed me to the shelves – there was something eh wanted. So we started our “human scanning system.” I pointed to some of the usual items of interest.

“Do you want this?”

No reply


No reply.

I walked over to him to offer something.

He pushed it away and then led my hand back to the shelves.

I followed his gaze carefully. And then…I pointed to a framed photo of my parents.

“Do you want this?


The requested photo

The requested photo

So I brought the precious (typically off-limits) photo to the bed and showed it to him, unconsciously stroking my Mother’s image.

“You miss your Baba, don’t you.”


I looked up. He’d never answered a question like that before. Tears in my eyes, I looked at him as he gave this photo one of his most loving looks and touched his Baba’s face.

The moment I’ve been avoiding and dreading was here. He wanted to see her. He misses her.

I told him that she is gone, like on a long trip, but that she wont be back. That she did not want to leave him. She always loves him, even now. And I promised him I poster and a book about his Baba.

He seems better now, at the end of this day.

I am still heart broken over the whole thing. He misses his Baba. The person who loves him as much as his Mommy and Daddy. His best friend.

And yet….I am immensely proud of him. He told me. He misses his Baba. The person who loves him as much as his Mommy and Daddy. His best friend.


About Joan

I am first, and foremost, the mother of two amazing young men. One of them has Down syndrome, Autism, Celiac Disease, and uses few words. I focus my work on providing support, training, and creating tools that will create quality lives, quality health, and connected community for him and his peers. It's true. We can all have a quality life, with quality health, and connected communities in which we thrive. Let's go on this walk together! You can learn more about me and my work at www.DownSyndrmeNutrition.com
This entry was posted in Disability-related, family and friends, General, ovarian cancer. Bookmark the permalink.

3 Responses to “Andyman” and his “Baba”

  1. Nancy Holroyd says:

    Oh Joan, I grieve more for you guilt than for Andy’s loss. No matter how many times you might have brought him to see his baba and no matter how close or far from her passing, there would still be this time following her loss. He needed to take this step and he found a way to let you know of his loss and you honored his expression by taking down that normally off limits photo and allowing him to handle it. You both ‘done good’. How can we explain the unexplainable to our kiddos? And yet you both discovered something that helped Andy. Give yourself a gentle pat on the back.

  2. Joan says:

    Hi Nancy –

    I don’t feel “guilt.” Maybe an “I wish I had..” or a bit orf “duh,” but not guilt. This journey is full of lessons and despite how hard I might try not to have regrets, I knew there would be some.

    I think the conflict I feel is the sadness of missing her and his missing her mixed with the pride in how this boy others see so little in can tell me something so complex.

    But I know you get that!

    Thanks for your compassion.


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