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. David, Your post last Saturday resonated with me and stayed with me. I greatly appreciate you sharing J.D. Salinger’s quote. I have been wanting to share my daughter’s story and you inspired me to go for it. An emotionally charged and difficult story for me to write on many levels. Thank you!

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  2. Thank you for sharing your story and your daughter’s story. I do not know who could read this without tears in their eyes. I have no doubt that her story will give hope and a sense of normalcy to many people. Your daughter is beautiful and brave and your granddaughters are awesome. Michele

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    1. Thank you Michelle for sharing your thoughtful, kind comment. You are right on the message I want to convey “hope and a sense of normalcy” despite the challenges and the pain. Thank you for your lovely words about my daughter and granddaughters.❤️

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  3. I have a really good idea of how you felt throughout Alisha’s illness and recovery. Baby Girl has some chronic medical conditions that I’ve never written about…don’t know that I ever will, but I’m glad you found a way to write it down, and I’m really glad that Alisha’s condition is better and she has two beautiful daughters!

    I really hope you don’t have to watch any of them suffer and feel so helpless again!

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    1. Deborah, I surprised my daughter with this post, although, she has shared her story in support groups, online and in her book. She and I often think alike. We know many people are dealing with chronic pain despite the smile on their face. I do realize and respect how many people keep their stories private, like your Baby Girl. ❤️ You know first hand, Deborah, how difficult it is to watch someone you love with a chronic medical condition. You remind me how we can only take it one day at a time. Hugs to you and your family.❤️

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  4. What an incredibly heart wrenching, heart warming and emotional roller coaster ride of a journey. I’m so moved by your post Erica. Thank you for sharing Alisha’s courageous story. You have a beautiful amazing family. Blessings and love to you all. ❤️

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    1. Thank you Miriam for your very kind, thoughtful comment. You describe my emotions, too. “Heart wrenching and heart warming.” I think many people face the world with a smile despite challenges in their life. I greatly appreciate your kind words about Alisha and the family. Take care.❤️

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  5. Wow! This is one of the most beautiful posts I’ve ever read on WordPress, Erica. You expressed Alisha’s struggles and triumph with so much love and admiration. Alisha’s book will no doubt be a blessing to so many. As for your granddaughters, what a precious gift. The photo of them drinking from the sprinkler is the sweetest! ❤ Thank you for introducing us to Alisha, Erica.

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    1. Jill, Thank you for your very kind comment. Coming from you this means a great deal to me. 💕 I have been wanting to write about Alisha’s story, yet I did not know how to fairly summarize the last twenty years. I knew I would enter a roller coaster of emotions. Thank you for your thoughtful words about Alisha and the girls. I hope you have a good weekend. Hugs. 💕

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  6. Thank you Erica, for sharing your and Alisha’s journey. It is inspiring. I reminded that the only thing we have total control over is our attitude. It looks like no matter what life throws at Alisha (and it has been A LOT, already!), her attitude (and yours) will get her through it. Lovely family.

    Deb

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    1. Deb, I think (know) everyone has challenges throughout their life. You say it perfectly how the only thing we can control is our attitude. I love how we have the opportunity to share throughout the week, Deb. Have a great weekend with Edward III and the ocean breeze.💕

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    1. Thank you, Donna. Alisha has always been an inspiration to me. She does make this world a better place. I still wish I had that magic wand. 🙏 I appreciate how we are able to share and support each other throughout the week, Donna. Hugs and have a great weekend ❤️

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  8. I can’t think of anything more painful than seeing one’s own child or member of my family in pain or distress Erica. Thank you for sharing Alisha’s trials and tribulations with us. I felt deeply for both of you. Her children and your grandchildren are doubly blessed. May they continue to be cherished and do the cherishing of both of you which they clearly do. My darling brother Christopher has had ongoing deep depression for many years, and though he lives a distance from where I live, and my sister is also far away, at least he knows he is deeply loved.

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    1. The uncertainty, pain, helplessness is a constant challenge. Yet, we are very thankful and blessed to have the children. There are also many positives. Our family and extended family is very close and supportive.

      I am very sorry for the struggles your brother Christopher has with depression. Mental health struggles are painful and often very difficult to treat. I do believe deeply loving someone does make a difference. Thank you for sharing your caring and thoughtful comment, Susan.

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  9. Even though I was with you every step of the way, you still brought a tear to my eye. Alisha is such a trooper. You would never guess the agony she is enduring by looking at her. She is such a beautiful vibrant soul. Knowing that every picture in her book reflects significant pain both stabs at my heart but also fills it with such pride. Her tenacity, boundless love and wry humour demonstrate her strength of character. Every picture tells her story. By turning her chronic pain into an awareness book she has found a purpose for her suffering.

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    1. No words can truly express how much we love our daughters. Both of them are an inspiration to us in many ways. All parents can relate to how difficult it is to watch our children in pain. Strong family values and feeling supported always makes a difference and helps us all feel supported through the challenges. I am grateful for this journey. Especially, when I am on this journey with you.❤️

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  10. Wow! What an incredible journey only true love can see through. Blessing abound through hardship. Not only do you have a miracle baby, your granddaughters are the bonus. Love these stories.

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    1. You are right Antoinette, blessings abound through hardship. Despite the challenges we are all very thankful for a great deal. Especially for the children and our loving supportive family.💕

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  11. Hi Erica – this was very moving … I’d known about endometriosis … but not having had children, or experienced childcare … I cannot fully understand … but can feel for you and for Alisha … I am so pleased all is well for you all … those children are quite delightful … well and the other two too!! Just enjoy being on the Island and being able to be together more often … while the book will be a great benefit to those not understanding the condition. So so pleased the surgery worked and everyone will stay well and healthy for many a year ahead. Take care – HIlary

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    1. Hilary, The surgeries did allow a window of opportunity to conceive the babies. Not everyone is as fortunate with endometriosis. You are right, how we live relatively close to each other on the Island and we can enjoy each other’s company. Alisha’s book is very relatable and puts a humorous spin on chronic illnesses. You have heard the saying “Humour is the best medicine.” I hope all is well with you, Hilary, and with some restrictions lifting, people are still being cautious. Thank you for sharing your thoughts and take care.

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  12. Is this a true story, this thought wrenched my heart and I had to scroll up and down twice to believe that Alisha, such a beauty had so many complications. Thank you for sharing it Erica. I love those pictures of your adorable grandkids… so precious! Blessings come in many forms!

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    1. Alisha has shared her story on support groups and online. I believe chronic pain is a topic that resonates with many people. Everyone has challenges throughout their life and a smile can often hide layers of pain beneath the smile. Balroop, thank you for reading and sharing your exceptionally kind comment. Family means the world to us.❤️ I hope all is well with your loved ones. Hugs. ❤️

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  13. So glad this had a happy ending! I’m so sorry for all the pain she endured. A friend of mine has had surgery for endometriosis, lots of pain, and other complications, but is finally, after maybe 7 years?, pregnant with her first baby. Hooray!

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    1. I think many people are not familiar with endometriosis and many of the complications. I am very happy about your friend. Exciting how she is now expecting her first baby. Children are such blessings, as you well know, Betsy. ❤️ Thank you for reading and sharing your thoughtful comment.

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  14. So many ups and downs in this story, yet with a good ending. I am sorry to read about all that Alisha endured, but am thrilled to see the photos of the little ones. So cute, so worth it all, I’d guess.

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    1. You say it well, Ally, ups and downs. I feel most people can relate to many of the challenges. And, yes, worth it when we have the children in our life. I hope you are well, having a good weekend and a much needed breather.🙂

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  16. It must have taken tremendous courage and emotional resolve to finally put this story down. I can imagine tears flowing down on the keyboard. I remember when a young nephew was diagnosed with leukemia; as soon as his Grandma saw him, she said “If only I could take your illness away and make it mine.” Love involves such depths that we become one with the other and take on their suffering too. There are so many miracles flowing through this story, but I am so sorry it took 10 years to come to any resolution as to a diagnosis and treatment.

    I once put a painful family story down in a private note to a friend and I could feel sorrow and grief rise up in my body and I tried, but was not successful, in stemming the tears and spasms of grief. In that case, there was a happy ending too.

    Finally it occurred to me today who you remind me of…. a sister-in -law named Kathy who has a broad, bright smile, and is always cheerful and cares and loves deeply. I always look up to her as a model for kindness.

    I’ve taken a little hiatus but always look forward to your blog; there is a little story I want to share if I can muster up the courage and emotional resolve. It’s not as profound as yours but is definitely profound in its own humble way. I hope I can share it soon. When I told family about my particular story, tears filled my eyes and I was overcome with emotion. In my case, it was initiated through an encounter with “strangers”.

    Today you have given me the courage to try to put down this story sooner than later.

    May all sweet blessings continue to flow down on you and your family and beautiful grandchildren,

    Susan Grace

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    1. Dear Susan, You always get to the crux and to the layers of a story. Sensitive and intuitive. It was after reading David’s post and the quote he shared that I “…can muster up the courage and emotional resolve…” to write this story. It has been marinating and percolating for a long time. Alisha has been open about her story on support groups and online. I respect how some people like to keep many parts of their life private.

      I very much agree with your Grandma’s saying. I think most parents can relate and would rather “make it mine.” And yes, the happy ending.

      I am very touched by your story about Kathy. I think this is many of us, especially during parts of our life. When you are reading to share the story, Susan, I am ready to listen to it. xoxo 😘❤️

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  17. Thank you for sharing such an amazing story of love, personal strength, perseverance, and, finally, joy. Your daughter is not only talented, but also very generous to share her journey with others. I had a work friend with endometriosis and watched her struggle through her pain and surgeries. She finally had a baby too. All babies are precious gifts, babies born after being told it may not be possible, are even more special. Your granddaughters have a very brave mom.

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    1. Thank you for your very kind, supportive comment, Janis. Many people do not know about endometriosis and how it can affect a woman’s body and her life. Diagnosis is challenging since it can mimic many diseases. It is usually diagnosed when surgery is necessary. Thank you for sharing about your work friend. Happy news about her baby!

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  18. Dearest Erica I can’t imagine how difficult the journey has been for Alisha and also for you. As mothers it is just unbearable to see our children suffer. I know my daughter had an ectopic pregnancy and we nearly lost her. Such a devastating time but then she had her Rainbow baby, Elliot who has brought joy to us all. Alisha has been through so much but is such a strong woman and you must be so proud. Your granddaughters are such a wonderful gift to you all and I’m so glad that there is such a positive and joyful ending. Take care and sending love to you all. I also loved the J.D. Salinger quote. Please give Alisha a big hug from me. xx

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    1. An ectopic pregnancy is very serious, Sue, as you well know. I cannot imagine how stressful it was for your daughter, you and the family. Your face lights up and you speak so lovingly of your grandchildren. They do bring joy to us all.❤️

      The J.D. Salinger quote was new to me and came to me at the right time. You have likely heard the saying, ‘when the student is ready, the teacher will appear.’ Thank you for reading and sharing your story. The pain behind the smile resonates for many during parts of our life. I really enjoy our connection and further sharing. Take care, Sue xx

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      1. Hello Erica

        It was a very stressful time however, we now have Elliot who has brought so much joy to our lives. I too love the connection that you and I have developed and look forward to a continuing friendship. Thank you for sharing at #MLSTL it is so lovely to have you in our community. xx

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  19. This is such an tremendously emotional post, Erica. Thank you for sharing that Alisha is your rainbow baby. I can’t imagine what Alisha’s journey was like, going through all the pain for ten years before the correct diagnosis and that she has Endometriosis. She is a courageous young lady with the positive attitude and hope to fight through the battle. It’s wonderful that she is rewarded with two beautiful daughters, your granddaughters. The photos are beautiful and heartwarming! ❤ 🙂

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    1. Miriam, I have been wanting to share Alisha’s story for a long time. I believe it is a story that resonates with many people. Yet, it was very emotional for me to write and summarize the last twenty years. And you are correct about the diagnosis and then how to move forward. Miriam, you know first hand how much our family means to us. Thank you for reading and sharing your very kind and supportive comments.❤️

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      1. I’m glad you did, Erica. It’s not easy to share personal and emotional journey, but I know that they are always encouraging to the readers. We all have our stories but often time we don’t share. When read read other’s story, we then have a connection.
        Is Alisha free of pain right now? She looks so happy, of course, with two darling daughters. ❤

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        1. I believe the pain behind the smiles does resonate with many people. The other message for me is how hopefully pain does not define your entire life. Alisha still has to manage the pain. A lot going on inside her body despite tremendous help with the surgeries. A delicate balance. Very thankful for the expert medical care. Yes, very happy with having the daughters, my granddaughters in our lives. You know all about this Miriam.💕 Your cuddle times will be coming soon. Not soon enough, of course. Your grandchildren are exceptionally adorable. 💕

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          1. Alisha’s story is heartwarming, Erica. I appreciate her courage and positive on look of life. I surely hope the pain management helps her to get through the days. Seeing the two daughters growing up is a great motivation for her to make every day counts. I know how my daughter motivates me from day 1. When I thinks of her, it gives me energy. ❤
            Hope you had a wonderful father's day with your hubby yesterday, if you did anything. ❤

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            1. You are absolutely right how Alisha’s two daughters are the light of her life and help make each day count. On Father’s Day, we met at a campsite where one of my daughters and her family were camping. It was breezy, outdoors and we could keep our distance with people outside of our bubble. I look forward to hearing how your connections and cuddles will happen, soon, Miriam.❤️

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            2. How precious that you got together again on Father’s day. This was so wonderful! Because of the protesting in the US, many states, including California where I am at, and Oregon, where my daughter is, have new restrictions. This may postpone my trip to see them. I’ll wait until it’s safe to travel. ❤

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  20. The smile is larger than life, and it says she knows she’s loved and it’s all worthwhile. A brave and lovely young woman. Nothing is worse than watching your child suffer, Erica. I can’t relate in terms of physical pain, but mine knows all about mental anguish. And today I have been anxiously watching my phone for news of someone else’s child. A 21 year old whose car skidded and ran into a wall on her way to work in the small hours. She has come through an op on crushed vertebrae and we are cheering her on to walk again. Life has very many stories. And you have adorable grandchildren. 🙂 🙂

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    1. Wow, you said it perfectly, Jo “…she knows she’s loved and it’s all worthwhile.” Mental pain is as serious as physical pain. Mental pain is often more difficult to treat.

      I am very sorry to hear about the accident. I truly hope there will be some good news. Life does have many challenges along the way. A friend once told me it is easy being positive when things are positive. I do count my blessings for my children and grandchildren. Thank you for reading and sharing your thoughts. 🙂

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  21. Beautifully written Erica, I can only imagine how hard it was for you to tell this story – yet it’s a story that needs to be told. Endo is such an insidious condition. I love Alisha’s cartoons – and that photo of the two of you? Oh my, the smiles are the same. I’ve never heard the term rainbow child before, but it seems so beautifully appropriate.

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    1. I have been wanting to write this story for a long time. I knew it would be emotional to write and difficult to summarize the last twenty years. Alisha has been open about her story and I believe the pain behind the smile resonates with many people. I have only heard the term “rainbow child” in the last few years. I think I first heard of this from Alisha and like you say, “beautifully appropriate.” Thank you for your very kind, supportive comment. Coming from you, Joanne, this means a great deal to me. I look forward to our connection and sharing.xx❤️

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  22. Dear Friend endometriosis is curable without a surgery. Nobody has to suffer. My wife was in a state of pain and suffering which cannot be described. doctors recommended an immediate major surgery. A traditional Indian medicine (Ayurveda) doctor Vasu +91-9422013174 cured her with his herbal medicine. He has cured many people all over the world. His secretary is Hemant +91-9310038046. If anyone needs to. Blessings to your rainbow children.

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    1. Alisha has been very open about her journey with endometriosis on support groups and online. I believe it is a story that resonates with many people, managing chronic pain behind the smile. I am very sorry about your daughters, Bette. And how difficult it must be for you. Thank you for reading and sharing your kind comment. You are very supportive to the writing community. The encouraging words make a difference in many people’s lives, including mine. Thank you!❤️

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  24. What a powerful story, Erica. I can’t begin to imagine how scary this journey has been for both of you, but more importantly, it has a happy ending. It also provides greater clarity around the special bond you seem to have with your grandchildren. You’ve been blessed ❤️

    Is the term ‘rainbow baby’ a relatively new one?

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    1. We have had a roller coaster ride of ups and downs for many years. Alisha’s resolve and spirit has been an inspiration to me. I think we all can relate to the pain behind the smile at some point in our life. Joanne, I had to remove many parts to the story to keep the word count down, yet try to fairly give a glimpse to the last twenty years. I kept thinking about the phrase you brought up ‘a Mother is only as happy as her unhappiest child.’ You are a wise woman, Joanne. ❤️ Susan (S.G.) shared a story from a Grandma with a very ill grandchild “If only I could take your illness away and make it mine.” As, Moms, Dads, Parents, I find this to be a very true statement.

      I have only heard the term “rainbow baby” the last few years. I do think it is beautifully appropriate. I hope all is well, Joanne. Always nice to connect with you! ❤️

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      1. I look forward to finally meeting you in person this summer. I think we will have many stories to share that we can’t do easily through comments, or as a group in the Zoom room.

        We came close to losing our oldest when he was a teenager due to a runaway infection, and I’ll never forget the terror. It’s as real today as it was 16 years ago. I do understand the desire of a parent to take the suffering as their own to save their child.

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        1. I cannot imagine how scary the runaway infection with your son. People do lose children over bizarre, inexplicable infections. My stomach is ill and heart racing trying to not think about the worst case scenario.

          You are right, Joanne. We don’t have much time to communicate back and forth with Zoom, and of course, we all filter our comments and keep many things private. At least the Zoom is some connection and a glimpse into each other’s lives.🙂

          It sounds like coming out West for you is still a plan. Yay! I am uncertain how the social/physical distancing will affect things. One day at a time. We will make it work on getting together. Looking forward to it! 💕

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          1. I have my fingers crossed there isn’t a resurgence in cases over the coming weeks. Apparently the Toronto area beaches were PACKED this weekend, so I’m not optimistic. I go into a personal isolation at the end of this week. Since my surgery will be on the right foot, I won’t be able to drive for 4 weeks. Staying healthy is the #1 objective on my list!

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            1. I went to Butchart Gardens with a friend yesterday. VERY surreal. Will likely save details for an in person conversation. They did their best to implement safe distancing. Yet, groups of families/tourists that did zero distancing and were eager to get close to the photo op regardless of who they were almost touching. The flowers gorgeous and areas where we saw no one. I was under the impression it would only be locals at the Garden. We do live in strange times. Huge healing hugs on the surgery! Looking forward to connecting soon. 💕

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  25. Wow, found that I was holding my breath to the last word of this post. So moving. What a beautiful tribute to your daughter’s journey. I am thankful she is one of those women who suffers with endometriosis but was still able to conceive. Your granddaughters are adorable and that much more miraculous because of their mom’s struggles.

    My youngest daughter has a Lupus-like auto immune deficiency that is beginning to look like vasculitis. Lauren miscarried 3 times before giving birth to her second child. I marvel at how well Lauren manages chronic pain with being a wife, mother and working full time.

    We are blessed, my friend, to have courageous, strong daugthers.

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    1. I greatly appreciate you reading this story and your very thoughtful words, Leslie. 💕 You are absolutely right. Many women with endometriosis cannot conceive. Alisha’s surgeries allowed a window of opportunity where they were able to have children. I am very grateful.

      You, Lauren and your family know first hand the challenges of living with a chronic illness. Auto-immune diseases are often very difficult to diagnose. I cannot imagine the roller coaster of emotions with the miscarriages.

      Brimming with tears, and agreeing with how ‘we are blessed to have courageous, strong daughters.’ They are an inspiration and they make this world a better place. 💕

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  26. I agree with all the previous comments. As a mom, who had a miscarriage and then a rainbow baby, I’m with you in your comment about how they can light up a room as you described Alisha as doing. I heard often that God doesn’t give us more than we can handle, and uses those moments to help the weak ones, especially by being able to share our story of perseverance against the odds. Your family’s story is inspiring, thank you for being open to sharing it for all of us to learn from. Hugs to you – and congrats to Alisha for her book and for creating two beautiful children. A mother’s love is truly a gift. xx

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    1. Shelley, I have just returned from your blog with your very kind response. I am very touched how you linked this post to your site. Thank you. The term ‘rainbow baby’ is quite new to me. It is a beautiful way to describe our babies.

      Alisha has been open about her story and sharing on support groups. As you know, it is the connections with people that help us manage and grow from our challenges. Alisha has been drawing her comic illustrations about chronic pain to help her cope. She was advised to compile them into a book. Thank you for sharing your story and your very kind, supportive words.❤️

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  27. My step daughter had endometriosis. She had her fallopian tubes removed as a young adult. She conceived through IVF on her third (and last) try. After the birth (twins, yay!) she had to have a hysterectomy. These are a few sentences that reflect years of pain and uncertainty and treatments that didn’t work. I didn’t realize you could have it so young. I hope it is better diagnosed these days. Thanks for your story.

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    1. You make a very good point, Kate. Trying to sum up years of pain, uncertainty and treatment in a few sentences is a challenge. It is a complicated, unique, individual journey. It is still difficult to diagnose endometriosis until severe pain and complications result in surgery. I am happy your step daughter now has children. I think you wrote about these children last year when they stayed with you? Thank you for reading and sharing your story.

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  29. Hi Erica/ Erika, Your love for your family shines in this post as usual. I think about the stress you felt when you saw Alisha in pain and after her lengthy surgeries. It’s heart wrenching just to read about it. Thank you for sharing a part of your family story and lovely photos with us. My congratulations to Alisha on her book which I’m sure will help others who suffer from endometriosis.

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    1. Natalie, I believe most people can relate to challenges where a smile hides layers of pain. There are no words to truly describe how grateful we all are for the caring, expert medical professionals. Alisha and her husband would not have been able to conceive except for the window of opportunity after the surgeries.

      Yet, a great deal is beyond our control. Thank you Natalie for your kind, supportive comment. Alisha has been drawing these comic illustrations for many years to help her cope and share the challenges of living with a chronic illness. She was advised to compile them into a book. She continues to draw and share on her social media and website. Have a great Sunday and I look forward to our continued connection and sharing.❤️

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  30. What wonderful smiles you all have, Erika. I know all about endometriosis as I also suffered from it for many years. I managed to have my two sons and breastfed both of them. I still get cysts but they are now controlled. I hope that your daughter’s pain and problems will be much better now.

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    1. Wow, Robbie, You know first hand about the complicated diagnosis, challenges, treatment and pain with endometriosis. As you say, the problems are better now, yet always still living with and managing the pain. Great news about having your sons. Blessings! I have met you recently and I am learning how your sons are also very artistic and creative. Just like their parents.🙂

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        1. I do believe specific art forms and creativity does run in families. You are also an amazing example for your son. Your art and stories always put a smile on my face. I look forward to following and reading more, Robbie.🙂

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  31. This was really poignant, Erica. And it hits close to home because I have a sister who suffered from endometriosis for years. In her case, a surgery did do the trick to ease nearly all of her pain and discomfort (she still has the occasional “moment,” as she puts it. But in the main. she’s thankfully fine at 72 years old. Alisha is brave. Many thanks for sharing her blog, book, and mostly her (and your) story about her journey. – Marty

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    1. I am sorry to hear about your sister, Marty. It is a challenging, painful disease with many complications. Really great to hear about the improvements your sister had after surgery and how she is 72 years old. Difficult for me to fairly summarize 20 years in under a word count. 🙂 My daughter has been drawing her comics about living with a chronic illness for many years and sharing on social media/support sites. She was advised to compile some of them into a book. Thank you for sharing your sister’s story.

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    1. You are right, Anabel, Many people living with a chronic, painful illness can relate to some of the (sometimes funny) challenges of day to day family life. Alisha has been an inspiration to me in many ways.

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    1. I cannot imagine all that your daughter and your family has been going through with this complicated and painful illness. Also difficult to diagnose. I friend of mine many years ago was often hospitalized because of Crohn’s. I hope your daughter is getting treatment to help her manage.

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  34. Erica, this is a beautiful, heartwarming post, filled with strong emotions and life challenges. I was SO happy and so relieved to see the gorgeous pictures you shared of both your daughter and those adorable little girls! What a beautiful family. Thank you for sharing this challenging and poignant very personal journey. Am sure it was not easy to write about…

    The comic strips that your daughter created are FABULOUS! She is very creative and talented, but more than that, clearly has a willingness and enthusiasm to share with others in the hope that her experiences will help them with their own. Bravo! I thought it was great how you included parts of her book throughout her post. I enjoyed her humour too.. which started right at the beginning with the drawing of the “gown bum”!

    Peta

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    1. I greatly appreciate you reading this story and sharing your very kind, thoughtful comment, Peta. You are right how it is challenging to write a personal story about someone I love a great deal, trying to keep the word count down, yet share the low and high points. I know you have children and you understand that ‘I would throw myself under the bus’ feeling for them. Thank you for your kind comment about Alisha’s comic strips. She has always had a wry sense of humour and she was sharing these illustrations on social media and support groups. A relatable subject for all chronic illnesses. She was advised to compile some of the illustrations into a book. I hope you and Ben are staying well.

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  35. Dear Erica, it’s not often I’m lost for words but reading your post a few times now I’ve just had to sit back and take it all in.

    Alisha’s story of her life with chronic pain, your pain and suffering with her is heartbreaking, sad and yet the family love and courage shines through. With utter compassion and warmth, you write of her trials (and yours as a mother) and also of the wonder and miracle of not only your own daughter but also two amazing granddaughters. I love Alisha’s illustrations, cutting to the heart of her illness, what she has endured. I do hope the symptoms are better now, that she can live a life with less pain and more normality … although we are all learning there is no such thing or guarantee. Thank you so much for sharing your and Alisha’s story, struggle, your close bond, the joy of motherhood and grandmotherhood! with much love, Annika xx❤️

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    1. Dear Annika, It was a story I wanted to share, yet emotional for me to put into words and summarize. Alisha has been open about her journey on support groups, yet she rarely discusses her trials and how she manages the pain. I think many people can relate to pain behind a smile. Thank you for your very kind comment about Alisha’s illustrations. You say it really well, how they cut to the heart of the illness. Awareness and education is a good thing especially when shared in an entertaining format. You know first hand, Annika, about the love and bond between a Mother and her child. xx ❤️

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  36. Alisha’s story touches me as a mother, Erica. We do love our children more than ourselves and hate to see them suffering, physically or mentally. Endometriosis is a debilitating disease. I know far too many women who suffer it without support or even recognition. I’m so pleased that Alisha has some happy mixed in with her story.

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    1. Many people do not know too much about Endometriosis unless someone close to them has this complicated and debilitating disease. The symptoms also mimic other illnesses. You know first hand the importance of awareness and education. You are right, Norah, how we can relate to the bond we have with our children. Also definitely many good moments and blessings around here. Thank you for sharing your thoughts.

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  37. What a moving post, Erica. I can’t imagine watching someone I love, my child especially, going through such pain. And for years! Finally, finally, a diagnosis and treatment. And those pictures with smiles and laughter make a happy, beautiful ending. You must be filled with pride and brimming with love. ❤ ❤ ❤

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    1. You are right, Diana. It is very difficult to watch anyone suffer, especially your child. I believe it is a story that resonates with many people. The pain and challenges of invisible illnesses behind the smiles. The importance of awareness and education. Alisha has always been an inspiration and a blessing to me and to all of the other people in her life. We are very fortunate we are surrounded by a loving family. You know first hand, Diana, about loving and caring for your loved ones. I hope life is going in a more positive direction.❤️

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  38. Hi Erica,
    I was so moved by your daughter’s journey and how carefully and tenderly you shared it. Any mother would feel as you do/did – we would do anything to take pain and suffering away from our children. She is obviously an remarkable woman, and now blessed with those 2 gorgeous girls.
    Thank you for sharing; I’ve know 2 women with endometriosis and it is a horrible condition to live with but rarely talked about.

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    1. It was a difficult, emotional story to write, yet I felt it would resonate with many people. Awareness and education is always a good thing, as you know, Nancy. 🙂 We definitely have many blessings, too. Thank you for your kind, thoughtful comment. I look forward to catching up with your life.xx

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  39. Oh Erica, I am in tears reading this! What an amazing story written with with such feeling and love. I know only too well how difficult it is to write such a post and commend you, it is full of love, compassion, honesty and understanding.

    Oh how I wish I could kiss my daughters better too and make it all right for them.

    I don’t know much about endometriosis but now I know more than I did before, so many thanks for sharing your daughter’s story. The photos of you granddaughters are great and you have so much love oozing from your words. I feel for you all but believe these stories are well worth sharing. xx #mlstl

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    1. Thank you, Deb. We have been communicating a bit this week, yet, I see I did not respond to your comment here. Thank you for your supportive encouragement. Education, awareness and universal Mom feelings. Nice to have each other’s backs and share part of our souls. xx ❤️

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    1. Thank you for reading and sharing your supportive comment, Lydia. You are right how many women suffer from endometriosis. Education and awareness is always a good thing. Alisha has been drawing these cartoons for a long time and sharing on support groups and social media. Thank you for your kind comment on her book.🙂

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  41. This is such a moving post, Erica. I can feel the love you have for your daughter in your words. I have cousins who’ve dealt with surgeries due to endometriosis and I’ve had exploratory surgery because my symptoms were such that they thought I may as well (it was not that). I am sorry she has had to endure such pain. Your granddaughters look so precious. I’m sure they fill both yours and Alisha’s hearts with so much joy. I’ve written about some emotional topics and others I’ve retained in privacy, but I do know how hard it can be to put the pen to paper. I hope you are having a beautiful week. xx

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    1. It was a difficult topic to write about since of course, emotional for us. Also, difficult to explain the last 20 years and stay within a word count. I think most people can relate to pain behind the smiles.

      I hope your cousins have improved health. I am sorry you had to go through surgery especially when symptoms overlap with other diseases. I hope you are better. Often, knowing what you are dealing with can help manage symptoms and the disease. I hope you will be enjoying some ocean air. I know that is one of your happy places, Amy. Take care. xx

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  42. Very thoughtful post. I also had endometriosis but it wasn’t as serious as Alisha from the sound of it. I was in quite a lot of pain at the time. I think it returned later but I was closer to menopause then so decided to leave it untreated.

    And sadly I wasn’t able to have children… partially because I was single, though I did go through assisted fertility treatments but it was costly without a partner and I was in my 40s by then.

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    1. You know first hand, Deb, about endometriosis, the complications and how it can mimic other diseases. Challenging to go through fertility treatments. Like you mention, on many levels. Thank you for reading and sharing candidly your story. I believe education and awareness is very helpful to many.

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  43. Thanks for sharing Alisha’s story, Erica. It had me holding my breath until the end. I love all the photos and her little girls are brimming with happiness, so adorable. She is definitely talented, too, to express through moving and intimate art and words. Her story is one of perseverance and strength, very inspiring for others.
    I can honestly say I understand how you feel about hurting so much when watching Alisha endure the pain that she has. My daughter (now 28) was diagnosed with an autoimmune liver disease when she was 20. She’s dealt with abdominal pain for the last eight years and numerous tests and procedures where my husband and I both literally feel the pain as well. There are no words to perfectly describe the feeling, are there? But there have been rivers of tears. She’s doing fine at the moment, but will eventually need a liver transplant as her liver is slowly dying. It’s a slow-progressing disease and she doesn’t drink alcohol. It’s all just autoimmune. Anyway, one day at a time. Thanks again for sharing this part of your life and I send virtual hugs to you all. Lauren ❤

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    1. Thank you for your very kind, thoughtful words about this story. Alisha does inspire me and many others.

      I am at a loss for words about your daughter. Like you say, difficult to describe the feeling and yes “rivers of tears.” Fine at the moment is good, yet a challenging road still ahead. Is this the daughter, Lauren, who just said her wedding vows with her husband? A very touching post.

      Our mantra in our family is also “one day at a time.” Thank you for sharing your story. Overall, it gives me the feeling we are not alone in this. A good feeling. xx ❤️

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      1. Hi Erica, yes, Steph, who recently was married, is my one and only daughter. My son is 25. In the beginning, we could only see the frightening future. Over time and following in her optimism and sunflower self, we focused on the here and now, living in the present and wrapping up each moment just like the precious gift it truly was. I apologize for telling my story because your beautiful daughter is the focus here. It’s just that when I read stories of similar experiences, I am comforted knowing I’m not alone. Much love to you all. 💕

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        1. Lauren, You share all of this beautifully “optimism and sunflower self.” Our daughters are similar possibly, where they are now in their journey. I love hearing about your daughter! I will never forget when Alisha was telling me about her book and writing “Her Story.” I was very sad since I learned even more about some of her trials. Then she told me how this was her “Endometriosis Story and not her Life Story.” Illness does not define her. This is a message I hear when you share your daughter’s story. When I read your post about her recent marriage, I had happy tears. Yes, “focused on the here and now.” Interesting how our children teach us important lessons.💕

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  44. It is so difficult to watch someone we love suffer. Hopefully Alisha will have a positive outcome going forward. There are many who share her experience and will find comfort in her comic illustrations which were funny and tender at the same time. I’m also glad your rainbow baby has a couple of beautiful babies of her own! Hugs to you all!

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    1. Thank you for your kind, supportive comment, Michele. Alisha (and all of us) are very thankful she was able to have the two girls. A window of opportunity after the initial surgeries made this possible. She still has to manage pain and other complications, likely for the rest of her life. I know many people can relate to an invisible illness and chronic pain. I appreciate your encouraging words about the comic illustrations. Alisha has been reading all of the comments and she greatly appreciates the thoughtful words.🙂

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  45. Watching one of your children suffer tears your heart out. You so wish you could be there instead of them. She’s an amazing person to have taken her chronic illness and turned it into something positive. It will help a lot of people. Best of luck to you both, regards Christina

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    1. Christina, I am surprised by the candid sharing and response on this post. You say it very well on how my daughter has turned the chronic pain into something positive and almost everyone can relate in some way. You know first hand about health challenges. Thank you for your kind, supportive comment.

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  46. Well I’m VERY late to this lovely post Erica – and I can see by the millions of comments that it certainly struck a chord with those who read it. As a mother I think your heart is just wrapped around your child when they’re struggling – and it doesn’t get any easier as they get older. My own daughter has had some health issues at times and it kills me to watch her dealing with it all.

    Seeing those two beautiful little girls and their smiles makes a lot of the suffering bearable – but how lovely would it have been for life to have spared Alisha and those she loved from the pain and the surgeries and recoveries? I love that she’s taken all that she’s dealt with and turned it around – her blog post was so real and touching and that book she’s written is amazing too. She’s certainly a daughter to be proud of. xx

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    1. Hi Leanne, I am surprised by the candid, thoughtful responses and the sharing of personal stories. Like you say, it has struck a chord.

      I am sorry about your daughter’s health issues, especially when you feel powerless to help. Thank you for your kind words about Alisha. I know she is reading the comments and touched by them all. We have many positives and joyful moments, and grateful for each other. I look forward to connecting more with you this week.xx

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  47. Marvellous! What an amazing women and amazing Mum too. I could feel the love bouncing off this post. The cartoons are wonderful – love their humour. I wish to every success with the book and your journey with that dreadful illness. Do they have any idea what triggers it?

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    1. One in ten women have endometriosis and the symptoms and complications vary. There is a genetic component and it mimics other diseases. Therefore, difficult to diagnose except with surgery. Thank you for your kind comment on the cartoons, Amanda. It can be a delicate subject and trying to describe symptoms and how to manage them and life in general can sound TMI. 🙂Possibly, a picture paints a thousand words.

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  48. Wow, Erika. You did a fantastic job sharing Alisha’s (and your) story! Heart-felt, emotional, honest. You have an extremely strong and beautiful family and it is wonderful to see and read how precious they are to you and how the love and care is shared.

    A side-effect of these invisible, chronic diseases is that the “outside world” often has no clue how miserable one feels on the inside. Also, you feel like you can’t complain or talk about it too much as others often have no idea how to react or no clue as what this actually means on a day-to-day comfort, family, and work level.

    Brave of you to share Alisha’s story and of her to do so as well – in a comic on top of her blog. I love the title and subtitle!! Congrats to Alisha! I hope you are able to see your daughter and granddaughters more often these days. And, I know from your sentiments and stories that Alisha knows how much she means to you!

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    1. Liesbet, It was a challenge to share an emotional and sensitive topic. Also, summarizing twenty years within a word count. I do feel everyone can identify in some way with pain hidden behind a smile. The way you describe the “side-effect,” sounds like you speak from experience. You are right, how we rarely talk about these complicated illnesses with others.

      Thank you for your exceptionally kind, thoughtful, supportive comment, Liesbet. 💕 I hope life is progressing in a hopeful and positive direction in your part of the world and in your life. xx

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  49. Oh, so sorry for your daughter and what she has gone thru. Her book looks awesome!! Having to go thru that with your child is hard, very hard. As a mother you have always been there caring for them and loving them thru everything but then there comes a time when you have to sit and wait, as well as hope and pray that they will make it thru everything they’re going thru. I have a story I have been wanting to write, it’s about my daughter too! It’s very painful when your active, full of life, healthy living child develops cancer, very hard to deal with it all.

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    1. Oh my gosh, Dee. I cannot imagine a disease as scary as cancer, especially for our children. Possibly some stories are too complicated, a depth of pain and difficult to explain, especially in a blog post. Alisha has been part of support groups sharing with each other. And she has been drawing and sharing the comics.

      I had planned to write a story about Alisha and Endometriosis to publish for Endometriosis awareness month in March, 2020. Then the whole Covid Virus changed the world and the focus was elsewhere. I read David Kanigan’s (from Live & Learn Blog)post. Perfect words and perfect timing for me to sit down and just write.

      I don’t know where things are with your daughter, Dee. A lot of hugs in your direction. xx

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  50. It is so hard to watch our loved ones suffer–especially our children. Thank you for sharing this story and for introducing us to your daughter. What a talented artist! I wish you both lots of joy and good health.

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    1. You are right, Christie, how it is difficult to watch our children in pain. Everyone does have challenges at some point in their lives. Always a good reminder on kindness and gratitude. You exemplify these qualities, Christie. 💕 Thank you for sharing your thoughtful, supportive words.

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