AMother I have and I think i will always struggle to understand why we are given such joy and exuberance at the birth of a beautiful baby only to be faced with heartbreak and devastation knowing your time together is far too short. We are with you and your family at this time. ❤
AMother Emily. Thank you for your update. I think our posts crossed.
This time must be like living the worst nightmare imaginable for you and your family. You have so much love for each other and not to be able to hold your child is heart breaking. Knowing he is surrounded by your love and that he is not alone is so precious.
Glad to hear he is back home. I'm sorry to hear that you can't hold him and comfort him the way you want to right now. Try not to underestimate the power of your presence, it means a lot.
Is he feeling like talking right now? Does he spend a lot of time resting? I wondered about the possibility of travelling the world together virtually over the internet together in his bedroom when I read your post. I found this National Geographic site for kids: https://kids.nationalgeographic.com/explore/countries/. It's not the way you want to do it, but it can still be meaningful for the two of you. Have you considered reaching out to Make a Wish? They create life-changing wishes for children with critical illnesses.
Thank you for trusting us with your journey. As a mother myself, i can read your worry, the pain, the hope and wishes,you have for your son.. I also hear your wish to offer your son some peace and joy before he dies. This is the hardest and most loving gift of all. Walking with someone, our children, as they face end of life, may be the greatest gift of love we can give them. We can carry the hope that there is a cure, a treatment, many more years, but we also carry the knowledge that we want to be honest with our children and ourselves.
So glad you can have him home. Do you get some palliative support to help him manage pain or uncomfortable symptoms? You mentioned he finds it painful if you pick him up, maybe there is a solution for this. Or...are there ways to “hold” him that are less painful - massage? Gentle therapeutic touch?
Is this an opportunity to talk to him about having a good death and what that might look like for him? It doesn’t mean, you have given up hope, but it does mean, you are open to have those tough conversations, if he wants to. Sometimes, we put on a “brave” face, when deep down he may have some questions that he would like to ask. Someone described HOPE as a balloon - you can carry his balloon of hope, but there is also space for him to talk about fears, things he would like near him now. What might be some possible things you can do at home that he would like? Bring him joy? For instance, does he want music on? Does he have some letters he would like to write to friends/family that you can help him with? Would he like some visitors? Sometimes some of the simplest things that bring us joy, we forget to have when we get ill.
Please feel free to continue to reach out here or private message me. A friend of mine went through a similar journey with her son who had a brain tumour. One of the most powerful things she said to me, was, “ this was his journey, his life to live and his chance for his own good death. I was honoured that he chose our family to share this with, as difficult as it was for us”...... She said to him...my love will follow you...
With care, Kim
Bilateral mastectomy in 2017, followed by chemo and radiation.
Mack and Hannah's mom
AMother , I have no children, and so am challenged to understand all (or any) of what you are going through right now. Ten months ago, though, my “oldest and best” friend lost her son to colon cancer. The words she said that stuck with me are, “Once I knew he was at peace with this, I was able to find my peace.”
To that end, I hope that Kims1961 Post will offer some suggestions that will help you both find some peace.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying