My new (almost) best friend…And Sherlock Holmes.

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October 2017-

They filed off the bus, one by one. She stepped off the last step, several other children in tow behind her.   Parents were lined up along the sidewalk, anxious to see their child after several days away.  (I guess I can no longer use that word, “child.”  She is clearly not a child anymore, yet she is not quite a teenager.  She is in that “in-between” stage.)

I stood along with the other parents, glancing from kid to parents, most smiling and reaching out to hug each other.  Some were tripping along the various sized bags thrown haphazardly along the way. Taking hundreds of sixth graders on a camping trip must be a huge undertaking, as it took multiple buses and adults to corral all of the luggage, back-packs, pillows and blankets, then several more buses to unload all of the tired kids.

I didn’t notice it at first.  It wouldn’t be until the next night and into multiple days later that I would replay this scene in my head.

Do you do this?

Do you replay scenes over and over again? Dissecting each moment.  Almost like a Sherlock Holmes episode, where I am Sherlock, (played by Benedict Cumberbatch, of course!) and I pause the frame…slowly walking around the scene, looking for clues.

There she is, walking towards me.  She isn’t smiling her usual smile.  I search her face, looking for signs as to whether she had a good time or had missed me like I had missed her.


I am that mother that gets up in the middle of the night, walking into each bedroom and placing my hand on my child’s chest, just to feel their heart beat.  I will kiss their cheeks and breathe them in, just to have that second with them that will calm my fears on nights I can’t sleep.  I am that mother that feels as if something is missing when one of my children are away overnight.  So, I hadn’t slept well the two nights she was gone.  I would lay in bed, feeling as if I was forgetting something.

To see her walking towards me would bring me relief that she was safe and home again. However…this time, as she is coming towards me, there is something different in her eyes and in the way she is carrying herself.

What is it?


She gives me a quick hug and walks over to grab her duffel bag and leave.  She waves to a few friends, gives a half smile or a hug to a girl here or there and we jump in the car and leave. I replay this scene over and over for days, trying to place my finger on it.

Did I mention that I am now listening to Brene Brown?  Actually, I have listened to two of her books on Audible now and I am convinced we should be best friends!  Ok, she can’t have my best friend title. That title is already taken, but I am positive that if we ever met, we would be kindred spirits.

Stick with me, this will all come together by the end!

So, as I am walking on the treadmill a few days later, listening to one of my new best friends talk about the power of vulnerability, it hits me.  Not like a “Eureka” kind of moment, but it was pretty close.

You see, my kindred spirit was talking about the armor we put around ourselves as we become adults. How we can’t be vulnerable or risk being hurt as adults, so we arm ourselves and protect ourselves, and in the process we lose our truth. (If you haven’t read the book, “The Power of Vulnerability,” I would highly recommend it.  I had several “ah-ha” moments.)

My daughter went on that camping trip as a little eleven year old girl, excited and full of wonder.  But when she stepped off that bus, I saw it.  It was the first bit of armor she had placed around herself.  I don’t know how I know, I just know.  Call it “mother’s intuition” or just a hunch, but it is there.  My daughter is slowly starting to wrap a shield around herself in order to not be hurt by others. She is learning to hide who she is to fit in, and to not be singled out among her peers. For obvious reasons, this is breaking my heart.  I don’t want the world to force her to feel she must hide who she truly is in order to be accepted by others.

Can I remember when my oldest went through this?

No, not specifically.  Then again, I wasn’t really as aware at the time. Or maybe I am more in tune with my children now than I was then? I don’t have the answer. I don’t know.  But the more I think and dissect this moment, the more I am trying to remember back to other instances.  When did my oldest start putting on her armor on?  One scene comes to mind…

Mother’s Day – 2016

I was upset.  The kind of upset where I am crying.  No…not crying…I am sobbing.  Gut-wrenching sobs that are shaking my body.  I am sitting outside in the back yard, curled up in the chair, legs bent and head resting on my knees.  I am crying because my feelings are hurt. I am crying because I feel tired and taken for-granted.  I am crying because I am still coping with what it truly means to care for a dying man and balance motherhood at the same time. I am crying because I feel like a failure. And I am crying because of so many reasons, when my oldest comes out.  She is crying because she sees me crying.  She is reaching for me, trying to give me hug and to hold me. She cries out, “Mommy” in the saddest way.

Do you  know what I do?

I do NOT let her comfort me or try to hold me.  I push her away. Not violently, but still, I motion for her to go back.  I am stuttering, and hiccuping and trying to get her to go inside and not see me this way.

I am ashamed…

I would eventually pull myself together.

October 2017-

For whatever reason, this scene and the scene when my middle daughter got off that bus the other day are linked together.  I do even more Sherlock Holmes tactics and I am more ashamed of myself for pushing her away than ever before.  How could I have done that?  She was reaching out to me, and I didn’t allow it because I thought she would see me as weak.  This is more heartbreaking to me now than I can explain. I have considered any sign of weakness in myself as shameful. Why do I allow vulnerability to be acceptable in others, yet I see it as my worst attribute?

I grew up with a mother who cried.  She cried often and for various reasons. I hated it….So I stopped crying.  In fact, I can count on one hand how many times I cried, beginning from the time my brother died when I was 9 years old to the time I met Matthew.  (After his ALS diagnosis, I have lost count…a fact that has bothered me for quite some time.)  How did I attribute crying to weakness and vulnerability?

My daughters are looking to me for answers and guidance.  I don’t want them to push people away when they are hurt.  I don’t want them to try to handle everything by themselves and degrade themselves when they can’t do it perfectly.  How did I get to be like this? How do I stop my son from suiting up before he even starts?  I don’t have an answer.  All I can do is show them that vulnerability is not a bad thing.  That feeling emotions is not shameful.

Pausing these scenes and evaluating them, and looking for ways I could have done something better is just one of the ways that I over-analyze and critique myself.  I do this over and over again.  I have done it for years.  Please tell me I am not the only one who does this crazy sort of scene dissection?  Where is the balance!?  My almost best friend, kindred spirit failed to mention how to find that!  How do I teach my children to stay vulnerable but not let the world hurt them? How do I learn how to take my own advice?

Will I ever get to the point in my life where I feel comfortable asking for help and not feel ashamed for it?  I think that is one of the hardest parts in dealing with ALS for both the pALS and the caregiver. Learning how to ask for help, but feeling as if I have no right to burden others.

It is what holds me back from writing.  I want to write about this experience and be honest about what it truly means to live and care for someone with ALS, yet I feel the need to protect those around us.  I know Matthew feels the same way.  We both feel like we are burdening those around us if we ask for help.  We feel ashamed for asking.  Then we feel bitterness and anger for wanting the help but not feeling as if we have the right to ask for it. And we both have the expectation that we should handle this perfectly…

It is a constant flushing toilet bowl of disappointment, and frustration and shame…

I guess playing Sherlock Holmes will be a good pastime in the coming days and weeks.  I am going to have to continue analyzing when and where I was when I began layering my armor around myself. And I will have to learn how to take it off and be vulnerable once again. Because that is where to true beauty is.

Damn…I am beginning to hate that word.






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