Where’s the phone to heaven?

The "Mom's" on a walk: Sugar, Baba, Joan, and Ryan.

The "Mom's" on a walk: Sugar, Baba, Joan, and Ryan.

For as long as I can remember, I’ve called my Mom at least once a day. I realize now that I am fortunate that my relationship with my Mother – both my parents – is healthy and good. Sure, we have our moments, but for the most part, my parents are the people I can count on – anytime, for anything.

Mom’s been gone just two months. Most of my tears have centered around intense memories of the last few weeks of her life. Death, no matter how it happens, is a tough process. Don’t let anyone fool you.

Mom was always one of my ke “go-to” people for Andy, my 20-year-old son who has disabilities. When she called me in Alaska during a visit with our oldest, Ryan, to tell me she had cancer, she was hanging out with Andy. But from that moment forward, she was robbed of that gift.

Moving away from her help has been a very hard transition. We’ve really had a tough time finding someone who fits Andy – and us – well. We were spoiled for a few years by Meagan, an amazing young woman who has a dynamic  nephew with Down syndrome.  Mom watched us go through support providers, one after the other, wondering, “Is it US?”

Well. Meagan needed some work this summer. She’s a teacher and wants to get some classes in this summer. We hired her in an instant. I”m still figuring out how to pay her enough, but it does not matter! Andy was thrilled to see her the first day. We talked and filled out papers and then decided to see how we’d all do on an outing.


In two hours we did more than I typically do in one day with Andy. We rode his bike up at the school, we went to the store to show Meagan where the best gluten-free foods are, to 7-11 for a slurpee, and even a short walk.  It was amazing. Andy was happy and loving every moment with his old friend.

I realized I needed to run to the post office to mail my taxes (June 15!) and ran out the door, leaving Meagan and Andy to hang. And while I was driving to the bank to transfer money, it hit me.

Where is the phone to heaven?

I needed my Mom. Not because my life was awful. Not because it is unfair she has been taking from me. Not because she was too young – I am too young to be without her. I needed her because I had something wonderful to share.

A new experience. Let me tell you, the sense of loss in that moment was 1000 times more intense than anything I have felt over the last two years.

I am not sure how I will meet that need. There’s no one in this world who understands the impact of the smallest things on Andy and me the way Mom did.

I am, however, thankful that perhaps the most heart-wrenching moment I’ve felt was because of a good thing. It’s a testimony to Mom’s role in my life – my confidante, my friend, my MOM.

I’m going to keep an eye out for the cell phone to heaven.


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
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2 Responses to Where’s the phone to heaven?

  1. Aviva says:

    So bittersweet. Beautifully written and described, and I’m thrilled to hear Meagan is back for the summer to spend it with Andy.

    But hey, if you find that cell phone to heaven, would you let me know? I’ve got a few people I’d very much like to call, especially my friend Cathy, who died four years ago this week. 😦

  2. Kimberly says:

    I truly “get” what you are saying about your mother. She was a champion! Sorry I didn’t see this post until now. I miss Sharon every day and tear up when I think of her not being in the house on Haines w/ your dad. I, too, have needed her recently to pose a concern/question. I miss that and I won’t forget her! It sounds like Andy will have had a wonderful summer w/ an old friend. Hooray! Take care.

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