Grieving the Lasts and Embracing Illness Firsts

Karen Kingsbury’s tear jerking poem, Let Me Hold You a Little Longer describes a mother’s affection. The profound sadness laced with delight a mother endures as her precious baby grows up. A poem not only for Mama’s but for everyone. A reminder to us all to cherish simple daily moments to hold on to them a little longer, a little more dear to our hearts. As an individual with a chronic illness, I learn the lesson to embrace life’s precious moments sooner than my peers.

“Long ago you came to me,

a miracle of firsts:

First smiles and teeth and baby steps,

a sunbeam on the burst.

But one day you will move away

and leave to me your past,

And I will be left thinking of

a lifetime of your lasts . . .

The last time that I held a bottle

to your baby lips.

The last time that I lifted you

and held you on my hip.”

I cannot help but consider my Spoonie lasts overcome with anguish. I inquire if I understood those moments were my lasts if I would have done anything differently.

The last time I would breathe without excessive pain.

Fatigue wrapping me in chains.

The last time I walked without feeling dizzy.

The phone call or visit from that friend I cared for too much.

Heartbreak still in my clutch.

The last summer consumed with fun.

The last time the sun kissed my skin.

Life was just about to begin.

The last time I gazed in the mirror and saw me not the battle wounds of my illness.

Things on pause an awkward stillness.

Remembering each the lasts is more than heartbreaking. Though I would have preferred to know those were my lasts, I doubt much would have changed. Despite being so young I know in my heart  I appreciated those moments of laughter to their fullest. I loved those people who wandered out on me with all my heart and as deeply as I understood how.Entering the chronic illness world is challenging. Furthermore, those people are forced to conform to the restrictions. Adapting to the medical testing, questions, and daily activities.  Attempting to master the language. Recreating lifelong aspirations.

The first time a medical professional uttered the name of my illness

The first time I meet another who would support me

Laughing together, developing a friendship, providing encouragement as I wept a sea

The first time I did self-injections

Releasing perfection

Chronic illness is a complex journey. Oppression, delight, and countless lessons have a place.  One encounters grief, frustration, sorrow, and joy. Strength and courage are necessary daily. Those with chronic illness soon become legendary inspirations for the world. Each has their unique grief with their lasts. And unique illness firsts.

If you are newly diagnosed please know that you are not alone. While this is certainly a difficult road there is a lot of beauty and joy.  It is okay to grieve. But don’t forget to embrace the simple joys.


1 Comment

  1. As your mom I remember all of your first things you had done, and even thro I miss my precious little girl, I am so bless for the young woman you have become. Victoria you have encourage so many with any kind of an illness reminding them that they are precious in the eyes of God. What have kept me going with every doctor’s appointment, test, hospital visits and more are the words from Jeremiah 29:11 For I know the plans I have for you declares the Lord, plans not to harm you but give you a hope and a future. God loves you more than your dad and I could ever love you (Agape love) and I am the bless one to be call your mom.

    Liked by 1 person

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