When You Love Someone More Than Life Itself

#chronicillness, #chronicpain, #comicbooks, #daughters, #endometriosis, #endowarrior, #pain, #rainbowbaby, #womenshealth, Books, children, Family, Gratitude, Health, Inspiration, Love, Writing 4 Minutes

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.
P1160953

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.ca: ENDOtheLINE: The Chronic Pain Comic

Link to Amazon.com: ENDOtheLINE: The Chronic Pain Comic

***Link to B.C. Disability website:  Alisha Winder’s article and interview, December, 2021: B.C. Disability – Alisha Winder’s article & interview

Alisha Winder:  endomyline.com

Instagram: https://www.instagram.com/endomyline/

Twitter: https://twitter.com/endomyline

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

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

Published

156 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

      Reply

  3. 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

    Reply

    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

      Reply

  4. 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

    Reply

    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

      Reply

  5. 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

    Reply

    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

      Reply

  6. 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

    Reply

    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

      Reply
  7. Pingback: The Rat Came Back The Very Next Day – Behind the Scenery
  8. Pingback: When You Love Someone More Than Life Itself – ENDOtheLINE

  9. Wow, that is some severe Endo. Thank you for sharing this. It surely can support others who feel alone. I didn’t get seriously painful Endo until in my forties. I only let it go for a few years before I just told them to take it all out (hysterectomy). I couldn’t take the pain anymore. I can’t imagine going through it for all her life. Since the surgery, I’m free of the pain. I hope she’s doing better now. How wonderful that she was able to have two beautiful, healthy daughters. I’m going to check out her website next.

    Liked by 1 person

    Reply

    1. Good points, Lori….validation. Alisha did have a hysterectomy yet she still has adhesions, scar tissue attached to many of her organs. It was recommended she will need surgery again, yet not want to cause further complications. As you well know, symptoms and situations vary and individual. Very grateful for our two granddaughters. I am happy you are free of the physical pain – emotional pain another layer and I appreciate your candid share of your journey. I added your quote to my ‘Inspiration file’….” There is light and beauty on the other side.”xx

      Liked by 1 person

      Reply

      1. Erica, I read Alisha’s story after yours and learned that she still does have pain. She really did/does have a severe case. I have one adhesion on my intestines that acts up on occasion, but I’m much better off than before. I also read about her second daughter’s health issue and hope the child is doing well now.

        Which quote did you add to your inspiration file? If it’s the one at the end of my post, I heard it from a movie.

        Another quote that helped me through that time is by Joseph Campbell, “You must give up the life you planned in order to have the life that is waiting for you.”

        Liked by 1 person

        Reply
  10. Pingback: When Life Hands Me Lemons – Behind the Scenery

  11. Wow Erica,
    I missed this post somewhere along the way although I remember reading something before about your rainbow baby. I am still in close contact with An ex health visiting client who wanted to ‘be my friend’ when I retired. This friend later had a rainbow baby, a term I was not familiar with before then. In our communications we always finish with 🌈 emoji.
    Sounds as though your rainbow 🌈 baby had a rough ride. ❤️

    Liked by 1 person

    Reply

    1. Thank you for visiting here, Margaret. I was off the grid camping and no cell. Therefore delayed responding to you. You are correct, how Alisha (my daughter) and I both had rainbow babies. She happens to be mine and she has always been a blessing in my life. I was not familiar with this term until recently. She still does have a rough ride with endometriosis. She has some coping/managing skills, yet always a concern with how the pain can progress. Thank you for sharing here. I hope all is well with you. I have pressed a “pause button” with blogging, yet I still visit blogs when I can.🌈❤️

      Liked by 1 person

      Reply

  13. Hello lovely Erica I saw your video which brought tears to my eyes and then read your post. I’m sorry I haven’t been in touch life has been hectic and more roller coaster rides. Rachel has recently been diagnosed with Adenomyosis which is the opposite to Endometriosis. The cells grow inside the uterus causing the uterus walls to thicken and causes pain and extremely heavy periods. She has been suffering a heavy period almost fortnightly and finally found out the cause. It is difficult to see them in pain isn’t it? There is nothing you can do but be there with a hug. xx

    Liked by 1 person

    Reply

    1. Dear Sue, I am very sorry to hear this about Rachel. I cannot imagine how challenging the the ripple effect of this diagnosis. I ‘get it’ on how difficult it is to see them in pain. As a Mother, I would rather it was me…and I feel very helpless. And, yes to the hug…to you, too, Sue.xx ❤️

      Like

      Reply

    2. Hi again, Sue, my comments keep disappearing on your site (your latest post about the Nutribullet) I don’t know whether ending up in spam – tried twice?)

      Like

      Reply

Leave a reply to Swinged Cat Cancel reply