Finding Home

The one who’s not there.

Today I went to a family birthday party. My mother’s turning 83 on Monday, and as she gets older, the more we want to celebrate her. My eldest daughter didn’t make it. She’s bed bound still, for almost a year now. Some of my sisters asked how she was doing, and my niece told me to pass on a hello, but other than that, she was absent from the conversation. She’s just not there anymore, and since her poor health seems to be in another holding pattern, there is not much to update.

We are bringing her to a Lyme Expert MD in New York this Tuesday, her appointment was bumped up from March due to a cancellation, but after the many doctors she’s seen and the many treatments she’s endured, we aren’t feeling euphorically hopeful. Maybe a touch positive is more like it. And we’re tired, so making this trip seems like a tremendous effort.

My heart hurts. Each event that she doesn’t attend leads her farther away from her family pod. Since her pain is so great, there’s nothing to do but keep her where she’s most comfortable. In bed. In her room. Until the next doctor’s appointment. The thing is though that I know she’ll get better. I give her what I call the survivor speech and it goes like this:

“You come from two survivors: Your dad was born two months premature back when NICUs didn’t exist, and my umbilical cord was wrapped three times around my neck, strangling me, when I came into the world. And we lived! And then there’s you, girl. Your twin didn’t make it, but you did. You too are a survivor in your own right. You are made of strong stuff. This illness? It’s temporary, and you’ll come through fine and go on to do great things. Your core is strong. Never give up!”

I see my nieces so strong and beautiful, boldly and successfully setting out to do what they accomplish, and I couldn’t love or be more proud of them. And I cry inside. Why not my daughter? Why did she get the lousy hand? I know so many people are praying for us, especially those family members who went to the party today. And prayer is holding us together. I know that. But sometimes, I just can’t cope. Her suffering is too big.

I can’t wait for the day that she’s there again, showing up at the table. To answer with her own voice, to speak up and participate and ask for some more lasagna. To be in and love her tribe. That will be a very special day.







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5 thoughts on “The one who’s not there.

  1. Janet Ancel on said:

    Lisa, Serena is very present in many hearts, ours included. I hope that Tuesday will bring some light and hope.

  2. Serena is present here in Alaska as well as each place she has been. She has left memories, smiles, thoughtful attitudes and sparkles of life. I’ll never forget her eating a huge reindeer hot dog! We will keep her in our prayers on Tuesday.

    She doesn’t walk alone and neither do you or Tim.

    Sending much love to each of you, Livia too. XOXOXOXO

  3. Elizabeth Walters on said:

    Oh Lisa, this post brought tears to my eyes. You are right, though. She is a survivor. She’s a fighter. We send all the love in the world to her and all of you. She’s in our thoughts often, so very often, as are you!

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