When You Love Someone More Than Life Itself

When you love someone more than life itself.  How do you share their story?

With great difficulty.

Rainbow Baby by Alisha Winder

My Rainbow Baby

I did not know there was an expression for this. 

A baby you have after a miscarriage.

Alisha is my Rainbow Baby.

Alisha

Meet Alisha

Kind, thoughtful, generous, smart, funny, giggles.

When Alisha walks into the room, the energy immediately shifts.

You know she cares about you and everyone in the room.  You have her undivided attention.

Her warm smile and calm presence make you feel safe. Everything is going to be okay.

Alisha makes this world a better place.

Behind the Smile

Alisha lives with a painful, chronic, invisible illness.

The severe pain began when Alisha was sixteen years old.

We would find Alisha sobbing, writhing on the floor.

Stabbing abdominal pain, sciatic pain, nausea, diarrhea, painful bowel movements.

A great variety of symptoms, all kinds of diagnoses, maximum dosage of medications. 

             “They treated my pain, they treated my brain, they made me feel like I was insane.”    “My Story”

The Severe Pain Became Worse

At age 26, unable to sit, unable to eat or sleep, unable to function, Alisha’s husband found her lying on the bathroom floor one morning, very sick.

On the waitlist for surgery,  Alisha’s case became immediate emergency surgery. 

The surgeon removed a baseball-sized cyst from one of her ovaries.

The surgeon then informed Alisha, she has Endometriosis.

Finally!  A Diagnosis! 

Alisha was referred to an Endometriosis Specialist at B.C. Women’s Hospital in Vancouver, B.C.

With further testing and surgery, Alisha was diagnosed with Stage IV Endometriosis.

Endometriosis is an often painful disorder when endometrial tissue grows outside the uterus.  It thickens, breaks down, bleeds and it has no way to exit your body.  Cysts can form especially when endometriosis involves the ovaries.

Endometriosis can cause the uterus, ovaries, fallopian tubes and bowels to stick to each other at points called adhesions. This can be extremely painful. 

Alisha had extensive surgery with the expert team in Vancouver.  Endometrial tissue, scar tissue and adhesions were painstakingly removed from many organs.

The Endometriosis Specialist separated Alisha’s uterus from her ovaries and her bowels.  They removed a large, painful nodule and they removed her appendix. 

Fertility Problems

Endometriosis can often cause infertility.

Alisha discusses her challenges trying to have children in “My Story”   on her website.

Alisha shares how she received bad news about complications with their baby throughout the pregnancy.  

“I reached my low. I knew I had to pull myself up again, so I decided all I could do was love. Love my baby, love my body, and love the time we had together, however long it may be.”            

Alisha and her husband now have two beautiful, little girls.  My granddaughters, Abby and Sadie.

             Abby is Alisha’s Rainbow Baby.

My Story

  • Feeling powerless and helpless when you see your daughter writhing in pain and sobbing uncontrollably.
  • Seeing her pale, white face, and shaking body after the lengthy surgeries.
  • I wish “Her Story” could be different.
  • I wish I could wave a magic wand and make all the pain go away.

When you love someone more than life itself.  How do you share their story? 

I also share how a chronic illness does not define who you are.

I also share the joy on Alisha’s face: 

     Seeing her babies for the first time.

      Mothering, playing and giggling with her two daughters.

I also share her words: 

      “This is my Endometriosis Story, not my Life Story.”

I love you more than life itself, My Little Lish.  Muh-Hugs

Have you wanted to write a story about an emotional topic and found it challenging to put pen to paper?

Are you or someone close to you living with chronic pain?

 

A special thank you:  To David Kanigan Live & Learn for sharing a quote. I needed to hear this.  I have wanted to write this story for a long time.

“Read a passage from Joyce Maynard’s “At Home in the World” where J.D. Salinger tells her: “Some day, Joyce…there will be a story you want to tell for no better reason than because it matters to you more than any other…You’ll stop looking over your shoulder to make sure you’re keeping everybody happy, and you’ll simply write what’s real and true.”

 

“ENDOtheLINE: The Chronic Pain Comic  Book

Alisha Winder draws incredibly funny and intimate illustrations.  She shares the challenges of daily family life living with a chronic, invisible illness.

ENDOtheLINE:  The Chronic Pain Comic” is unflinchingly honest and relatable.  This book brings humour and awareness to invisible illnesses.

Link to Goodreads review:  ENDOtheLINE: The Chronic Pain Comic

Link to Amazon.caENDOtheLINE: The Chronic Pain Comic

Link to Amazon.comENDOtheLINE: The Chronic Pain Comic

 

Alisha Winder:  endomyline.com

Instagramhttps://www.instagram.com/endomyline/

Twitterhttps://twitter.com/endomyline

Facebook:  https://www.facebook.com/endomyline/

Weblink:  https://www.mayoclinic.org Endometriosis

 

140 thoughts on “When You Love Someone More Than Life Itself

    1. Thank you for your kind comment, Mark. I believe the story carries a universal message and resonates with many. We have all likely worn a smile, hiding pain behind that smile. Also, Alisha’s comics are funny! How can you tell I am the Mother, here.🙂

      Liked by 1 person

  1. What a beautiful tribute to your daughter. I had a rainbow baby too. He is a special guy! Unfortunately, he and his wife have fertility problems too. I don’t think they will have any children, which is a shame because they would make great parents. Loved this story!

    Liked by 1 person

    1. Laurie, I only recently learned the term “rainbow baby” yet, I believe it fits beautifully. Fertility problems are a significant issue. Many people keep it private since it can be a very challenging and a painful subject. Thank you for sharing your kind, thoughtful and supportive comment.❤️

      Like

  2. Erica – I’m sorry it took me so long to get here. I’m crying (but not bad tears, just emotional tears) over your story, Alisha’s story, over the difficulty of seeing a human you love so much (and there is no love greater than the love for our children) experience such pain, over the miracle of surgery to help recover, and over the birth of her two children.
    Phew. That’s a lot of emotional feeling. Yes, I’ve felt that deep pain of seeing a loved one go through pain (physical or emotional) and not being able to do anything but ‘support.’ But love, wow, love does make a HUGE difference during all of it. Thanks for sharing your, and Alisha’s, amazing story. I think I’m crying over that too – your courage in writing this post.

    Liked by 1 person

    1. Pam, I feel this story resonates with many people. The pain behind the smiles. How we ultimately do not have the power to fix everything in our loved one’s lives. You bring up a very good point on emotional health. Mental and emotional health is often something we cannot “see” and often exceptionally difficult to treat. When Alisha wrote about how “….all I could do was love…..” tore at my heart. There is more to “loving” than I could even imagine. I believe she “loved” her unborn baby to live and life. Thank you for reading and sharing your insightful and thoughtful comment, Pam. ❤️

      Liked by 1 person

  3. What a long and painful road to get to the diagnosis of endometriosis. It is a blessing that two beautiful daughters could be born through all of this, but not without more pain, a devastating loss, more complicated surgeries, and endless chronic pain. That Alisha takes this all on with optimism, humor, and a fighting spirit that sees her through every day allows me to face a much lesser fight with bravery and hope. I wish that she didn’t have to fight the fight of an Endowarrior and that you didn’t have to experience the helpless feelings in it all. Wow. Just wow. Has Alisha thought about submitting her comic book and/or story to Washingpost ‘The Lily’?

    Liked by 1 person

    1. Hi Lisa, I am finding more and more how this is a story that resonates with many people at some point throughout their lives. You know this first hand about health challenges within a family. I am inspired every day by Alisha’s “optimism, humor, and a fighting spirit.” Alisha is reading all of the comments on this post and we greatly appreciate the support. Thank you for mentioning “The Lily.” New to us and we will investigate. I hope the Captain is still on the mend. Yes, bravery and hope, always, Lisa. Thank you for reading and sharing your thoughtful, supportive and helpful words❤️

      Liked by 1 person

  4. Erica, Alisha’s story is heartbreaking, and yet it’s also so uplifting to read of her courage and sense of humour in the midst of experiencing extreme pain. How hard it must be as the mom, to see your beloved daughter have to go through all of this. Having children is always a wonderful gift, but especially so in the case of your two beautiful granddaughters. My mom lived all of her adult life with chronic pain, and I am still in awe of her determination and courage. Thank-you for sharing your daughter’s story.

    Jude

    Liked by 1 person

    1. Jude, I was going to share Alisha’s story during Endometriosis awareness month which was in March. Alisha had published her comic book about chronic illness in March. Of course, the news became focused on COVID-19. I believe many people can relate to dealing with chronic pain and like yourself, watching a loved one suffer. We have had the discussion, Jude, how we are as happy as our saddest child. This hits home, likely for all Mothers. 💕Thank you for sharing your thoughts.

      Like

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