January Catharsis – The Note that Started My Book

January 22nd, 2012 I wrote this, beginning my journey to complete From My Mother: Surviving and Thriving in a Family Ravaged by Genetic Disease.

It’s been a long time coming and there has been a lot of healing. I can’t wait to share the story with you in full in April. I hope it helps one of you heal as much as it helped me.

________unedited original manuscript for a Facebook Note over almost four years ago_______

I lost my brother and my mother to the same disease – myotonic dystrophy.  Today I watched a show I’ve never cared to before, Tommy Boy.  My husband said he loved the show; I’ve always thought it too stupid to be worth the time.  I watched the whole show because… Tommy’s father dies and he wants to honor what his father stood for.

I’ve been having flashbacks today.  I ate my lunch and remembered the cafeteria in the Hays hospital.  Eli cried, probably over his teeth, and I remembered holding him in the hospital waiting room while he cried with nowhere better to go.  Eli has a toy, a little bumble bee ball that makes noise and plays the music to the song “I’m bringing home a baby bumble bee.”  The song always ends right before the next line “won’t my mommy be so proud of me.”  I sing it out loud sometimes when the song stops.

I sing to Eli while I change his diaper: “I’m raising a wonderful baby boy.  Won’t my mommy be so proud of me.”  Sometimes the song continues into randomness, other times I cry.  The tears are never large enough to fall on Eli, instead they are small enough I can wipe them away before anyone else notices.

My mother was always proud of me, proud of how well I did at Monopoly, my grades, my basketball game, watching games at Bethany; my mother thought I was the most special girl in the world.  She would wear my picture on a button to work.  I was embarrassed about that once or twice, right now I feel blessed.  I tell Eli I hope I’m strong enough to love him like my mother loved me.  Watch out world, if I come close to my mom’s love for me, I’ll think my son can do close to no wrong.

I wanted to go workout this morning, hitting the gym is easiest on the weekend when you have a 6 month old at home.  But after watching Tommy go to his father’s funeral on TV, and walk alone down the road, I didn’t have motivation for much except to go sit on the steps outside.  The weather is nice today, perhaps a bit of a chilly wind.

My mother was in the hospital for about a month.  I lived 25 years of my life with her.  When I remember her though, I remember the hospital.  I have to sit and think, try to remember, to have other pictures of my mother float through my head.  I remember her writing “pe patient” in scratchy handwriting and thinking what a success it was to have a way to communicate with her where I could understand her again, even if she mixed-up her letters..  I remember the next trip I took to Wichita she couldn’t write; in fact, at that point she couldn’t read… her eye sight was going.  I remember her sitting in a therapy chair and giving me an arms-wrapped-around my back hug for the first time since being in the Wichita hospital.  I remember being so grateful for that moment, and wondering why I didn’t appreciate all the thousands of other times that happened in my life that much the whole drive home.

I remember when we were alone in her hospital room and she asked me, without any voice coming out, but her face muscles still worked well enough that you could read her lips at that point, about two weeks before it’s over: “what’s happening to me?.”   I reminded her about Dustin, his disease, how she was a carrier, how it was affecting her body, how she had come to not be able to breathe on her own… She knew she was dying, she didn’t know why or how.  I could have told her the exact same story the next day and she would remember only parts of it.

I remember showing her a picture of Dustin, his back turned to the camera, and she couldn’t tell me who he was.  My dad had to tell her that their dog died while they were away at the hospital about four times before it was no longer a tragic surprise to her.  Somedays I can’t forget that near the end, my mother had many things she couldn’t remember.

I have many wonderful memories of my mother.  I get stuck on the hospital.  I look at Eli’s smile, see her eyes in his, and I think “my mother would have loved to watch you grow.”  If I say such a thing around my father, he reminds me my mother does watch Eli grow.

Eli has a lot of love and interaction in his life.  He is lucky to have his grandfather watch him each day while Daniel and I are at work.  I hold Eli and I know having and raising him is the biggest, best task I’ve ever been given.  Eli is the thing I am most proud of creating, contributing to, accomplishing, all of it.  He is what I want to give the most effort and energy to.  My mother got to see his first three months of life, but now he is almost six months old, has a tooth, stands without being held if he’s next to a table, eats carrots and apples, watches his daddy and wants to do what he does.  I wish my momma could hold him now.

In the hospital my mother held a bottle and fed Eli as he lay on a pillow next to her.  Now he can sit up on his own and hold the bottle himself…

This is the first time I’ve written for myself since November.  I’ve cried a few times, I can’t come to a good conclusion.  My mind and my heart are still processing, still in the stage of flashbacks of the hospital.  I went through a phase very similar to this when Dustin passed away too. I know it passes.

Here is what I know, even before all the fog clears: family matters, in fact family is one of the biggest blessings in our lives.  I want to give that to Eli, I want to be the mom that loves him like my mother loved me.  As many great moments as I had with my mother, I wish I had more, I wish I could hug her again and show her my son.  Don’t take your family for granted.  Visit your parents.  Tell them you love them.  Make time for them even if they just want to come to your house on the weekend and talk while the TV is on.  Don’t let the inconvenience of an annoying sibling let you stop from spending time with them, or saying I love you.  Don’t let physical distance lead to emotional distance.  Invest in your family actively.  I turned my mother’s request down a few times to drive to Larned for dinner.  It was more drive time than family time, and in the past we’d hit a deer in the dark on the road down there.  I’d walk in bare feet through the snow to Larned to see her now… on a school night.  It all seems so small; it’s funny how we can get it so confused on what matters in life.


elis visit
My infant son’s last visit with my dying mother

Writing is a beautiful way to heal..




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