Called To Be A Mom To A Terminally Ill Child

Called To Be A Mom To A Terminally Ill Child
This entry is part 5 of 11 in the series Called To Be A Mom

Called To Be A Mom Series

A lot of you may feel like you don’t know how moms “do it”.  Are there any moms who are called to be a mom to a terminally ill child?

Four years ago, I was celebrating my birthday. All would be different that day and the week to come. I had always dreamed about being a mother. I saw all my friends have kids and loved them. I also had became very close to some of my friends kids. Johnathan was a special boy. He was hyper just like my boys are today. My oldest is wild and crazy and has a very caring and dear heart. He reminds me of Johnathan. Granted, I had moved a couple cities but whenever I came home I would visit Johnathan. His mom was one of my best friends.

I remember that day, kind of hard not to remember when it is your birthday. I don’t remember who called me but I remember the call. Johnathan almost died the night before and kept having seizures. It was crazy days to follow and it changed my best friends life and my life forever. They were able to have emergency surgeries and save him then.

I was so numb by this news and I have to say a birthday has not gone by since that I don’t remember that day. Well, a week later I received the best news. A week later I found out I was pregnant and I was so happy to FINALLY be a mother. It was bittersweet. Trust me I love being a mother otherwise I wouldn’t run a blog called “Called To Be A Mom.”

But how do you manage telling your best friend you are pregnant while she now lives away from her family in a hospital with her son that they are trying to save. During this week they also found out what Johnathan had. He had a very rare form of brain cancer. He was the sweet age of 5. An innocent child who is suppose to be learning his alphabet, playing with friends, bonding with brothers and living life full of happiness and innocence. The next fifteen months of his life were full of pain, being away from his family, moving to a different state only with his mom, and lots of surgeries. He even became wheelchair bound.

I have to tell you, re-visiting these moments are hard. I was not Johnathan’s mother. But I had so much empathy for the whole family. Johnathan loved when I visited. He had two other brothers, but Johnathan and I had a special bond. He was so sweet and gave the biggest hugs. He loved when I came by! I loved his excitement and his caring nature.

This next segment is what Johnathan’s mother had to write. She wanted me to post it. She is amazing. Not many have the faith she has. Here is the letter, afterwards I’ll catch up with you.

Johnathan 3

Dear Johnathan


I am sitting with you in the Hospital; we have been here since August 2nd. Your Journey started almost a year ago; I never thought that this is where we would be a year ago.


There have been so many bumps in your road to healing, and you are such a fighter. Every day is a battle for you. Often I listen to other people, talking about their every day problems, and I am guilty of resenting their simple problems.


You are such a trooper, you fight for every breath. You deserve a simpler life, a life where you can love, laugh, and run, chase balls and do the things that you love.


It occurs to me that this is completely unfair to you, keeping you here, hoping that the doctors come up with some way to help you feel better; praying that God will heal the damage that has been done to you.


You are just a child but already you have weathered more then most adults could dream of.


I’ve seen other children suffer, but none like you. Your pain has lasted so long. Not just this past year, but the years that you were misunderstood and denied a normal life because doctors refused to see what the real issue was. Not ADHD, not OCD, not a developmental delay, not Autism, but a tumor hidden inside your little developing brain; silently growing and preventing you from becoming every thing that God meant for you to be when He created you.


I am sorry that the ordinary people in this world never saw what I saw in you. I am sorry that the people who should of accepted you and loved you more than anyone else in this world turned their backs on you and called you a distraction. I am sorry that I did not do a better job of defending you, of fighting for you and making them understand.


You are like no other person I have ever known, your giggles. Your empathy for others, your gentleness that you have always shown for your brothers, the sweet innocent way that you used to lie for your daddy when you knew I was going to be upset with him for forgetting something or doing something stupid.


You are precious and it showed in the ways you stuck up for your little brothers even when they would pick on you. You have always deserved better than this, and I am sorry that I couldn’t prevent it.


What a brave little boy you have always been, how strong and courageous. Creative and full of life, there was never a moment when you took things for granted you have always lived life to the fullest and even now as you lay in your hospital bed struggling just to stay with us, I see you. The you that I have known your whole life, you are in there waiting for the moment when your brain heals and you come back to us as you were before.


You will always be that little boy, however this ends. If you are here with us or in heaven with God my memories of you will continue. They are sweet precious little pieces of my life that will be with me throughout eternity.


If you are here with us, if you never walk again, if your sight is taken from you, but you are still able to laugh, to giggle, to listen to the music you love, if I can read your favorite stories to you and know that you are happy that is all I need. To know that there is a quality to your life, purpose and pleasure.


Your curiosity and creativity has always fascinated me. You are amazing, knit together by a God that loves you and will never abandon you. You are a precious creation, loved by God; your time here with us has purpose.


You are my joy, my happiness, my peace! You are a part of me that can never be replaced and the memories that I have of you will always be with me, no matter the outcome of this terrible situation.


I long to see you wake up and be with us, to take your pain and struggles away. I love you with a love that has no end; there is nothing, no one who could ever take your place in my heart.


You are my son and I know that you fight for us.

 Johnathan 2

What a life you have had, what a beautiful and sad time it has been here on earth for you. What a great future God has in store for you. If not here with us, then with Him in heaven! I hope the plan is for you to be with us, but will except whatever it is that happens. I may not like it, but I will accept it.


My hope is that some day I can share these thoughts with you, my memories about your hard times, your good times, and your precious life. You are a gift and there are no better things that could be given to me than to see you grow into a man and have a family of your own.


Life has been hard for you, but you are fighter dear one. And no one can ever take that away from you. You are strong and gentle and kind and full of so much that you can bless the world with.


This world does not deserve someone as beautiful and special as you, still though I want you to keep fighting and stay with us.


You are my sunshine! You’re the glimmer in the stars I see at night, you are the breeze that blows through the trees; you are every thing fascinating that God has created. You are His creation, beautifully designed and made without flaw. You are my child, a miracle of God, loved and protected by Him, entrusted to us for however long you stay in this crazy world.


Your life can be summed up in many memories and this is one of my favorites. One day you, your brothers and I were in the kitchen, we were singing the “going on a bear hunt song.” We got to the part where we said, “It’s a bear run!” And you said “Stop! Don’t run mom, I have a gun, I’ll shoot the bear.” How funny that you were going to protect us from the bear. I just wish that I could have protected you from this big mean bear that has taken over your life.


May God protect you John, may he hold you in his arms and keep you safe, and may He love you like no one else on this earth can!


Love, Your Mommy




As a mommy she watched helplessly as she couldn’t protect her child, which is what we are made to do. We are suppose to be able to protect our children from all bad things. We are the mothers. As a best friend perspective, I tried to be there for her. I prayed. I helped with what I could. The 15 months of fighting his cancer were so hard.

The family has been changed forever. Johnathan’s mom is a different person then she was before he got sick. He needed someone to be there for him. She waited by his side seconds, hours, days, months all the way to 15 months of illness. She still waits for him.

Sometimes our calling is hard. No way around it. Motherhood has pain. I wish I could take it away. But sometimes you can learn more from pain than from happiness. Johnathan’s mother served her son. She advocated for him. She was a mother, that not many of mothers could be. She was amazing. I don’t know how she did it. But I do know she did it with love, faith in God, and taking a step forward every day. She is happy she had her son. She never regretted him. She has so much love and a whole new perspective. She is a mother who cherishes being a mother every single day. She wants to be there with her kids.

In the end, we don’t know what our journey as a mother will become. We just know we are called to be a mom.

The mother who I wrote this about wanted met to include ways you can help. The following links are for St. Jude. Check them out and help other moms who are having their hardest “calling.”
St. Jude Gift Shop
St. Jude Thanks and Giving

*The previous links I do not receive compensation in any form. Nor, would I ever want compensation. The money goes and benefits those who deserve it the most.

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    • Thanks for pinning it! She is incredible. Sometimes we don’t know our own strength until we go through some trying times.

  1. This was a tough post to read. We often forget how lucky we are to have healthy children.

    • This was a tough write as well. Often it is easier to stuff hard times behind and not talk about them. I am hoping this encourages the mothers who are in the tough situations. Yes, having healthy kids is a true blessing!

  2. What an amazing story. I am so sorry to hear of Jonathan’s battle, no child should have to endure it. Your friend’s words brought tears to my eyes and empathy and thankfulness to my heart. God bless their family and thanks for sharing these stories about the different kinds of moms who deserve the utmost respect.
    Tanya recently posted…Celebrate Rheumatoid Awareness Day February 2, 2014 #RheumMy Profile

    • She has an amazing heart. I am so honored to have her as one of my best friends. She is one tough cookie and so sweet and kind-hearted.

    • I think all moms are pretty tough. I think we all do what we can and do the best we can.

  3. Wow. She worded her thoughts so passionately and beautifully! Being a mom is a difficult (and sometimes fierce) time where we all find strength we didn’t know we had. Thank you for sharing this.
    Bonnie a.k.a. LadyBlogger recently posted…Teacher QuotesMy Profile

  4. My goodness. These are things that I just feel no parent was ever meant to go through. What a strong woman she is!

    • She is definitely that! I agree it would be great if no parent went through such tragedies.

    • You are right. She still thinks about him and has hard days.

  5. There are not many in this world who know or understand just what it takes to go through things like this. Parents and children must be brave, strong, and courageous. Rory has had over 100 hospitalizations in her 18-years of life, some for months at time. I do understand, and I empathize. This is a wonderful, albeit sad, story, but it is truly inspiring. Thanks for sharing.

    Life With Lorelai
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    • That is a lot of hospitalizations. I am a sibling to someone who has had over 24 surgeries. I know what it means to have chronic illness in a family. Sorry you have had to endure so much in your lives.

  6. I’ve gone through two tissues so far. This was such a touching post to read. Knowing that she is such a strong and loving mother to her very young son. So young! I will keep them in our prayers.
    Cherie @ incherieswords recently posted…Must Bake MondayMy Profile

    • I went through a few boxes of Kleenex back when this happened and cried while I wrote this. Sometimes it is so much easier to keep emotions behind you, but my prayer is that this is shared with other moms going through hard times with their children.

  7. So hard to read, I can only imagine how much your heart hurt and this mom’s while writing this. What an inspirational Mom and Son they are. Life is ‘not’ easy or always happy, but if we trust in God we somehow manage to get up in the morning and take one more breath. I’m reminded every day working in Oncology of how courageous the human spirit is, yet a child is always the hardest, saddest to hear. A coworker’s grandson recently has been diagnosed with brain cancer at 5yrs old, it has touched us all and as a community of coworkers we join together to show the family our love and support in any way we can. I hope your friend knows how very much others do care about her, even those of us who have never met her yet now share her journey in our hearts. God Bless. ~ <3 ~
    Kim @ WampumHome recently posted…Bodhi n Dharma’s list.My Profile

    • Thanks Kim! I have encouraged her to write a book or start a blog to help encourage others. So far it is not the right timing. That is why she let me borrow one of her notes to share is because she doesn’t have the time right now to sit down and share. She is a person who has so much inner strength. She is amazing.

  8. Thank you both for sharing this story! The courage to share such a deep sorrow and reach out to let others know they aren’t alone is amazing. I read this with my heart in my throat and I could only hope to have friends who could share my story and hold my hand like that. Powerful.
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    • Thanks. I am hoping it helps out the mothers who need it. I appreciate your kind words.

  9. Wow…thanks for sharing this. Reading it brought tears to my eyes…I can’t imagine going through that with either one of my little ones.

    Thanks for linking up to the Bloggers Brags Pinterest Party! I have pinned your post to the Bloggers Brags Pinterest Board.
    Rachel recently posted…5 Things I Hate Hearing as a MotherMy Profile

  10. Moving, thank you for sharing. I’m off to check and see if your series includes, “Called to be a Special Needs mom.” I could use some encouragement there.

    • It doesn’t yet, but it will. I just started the series in January. I have a sister with special needs and I worked in the field for ten years. So it will be there!


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