It is coming up on the two year anniversary of the date that my daughter was diagnosed with ATRT. ATRT is a rare form of a brain cancer that is found mainly in children and has a very poor prognosis. It is extremely aggressive and as I said it is extremely rare. You either have a genetic disposition or bad luck. My daughter was the latter case. She was three years old when she was diagnosed in November of 2015. She went on to have had 18 beautiful months of life after her diagnosis some in the hospital and a lot out of the hospital and with her family. However none of it without a lot of worry and anxiety and pain. Sadly, she passed away at home on August 4, 2017. As you can imagine for a mother who lost her only daughter very recently this is still a journey, however, this is not a tormented one at all. I am not broken. I am however, different.
This post is not about that in a sense. However, it is about the magical mystery of self healing if you are open to it. Her life, her journey, and our journey together as a family is what compelled me to start this blog. Helping a child fight cancer I imagine is very different than helping an adult. My daughter wore her princess dress all through her treatment, never complained, and was generally all smiles. She taught me a lot about courage and living life to the fullest. She taught me about facing life with a smile even in your darkest circumstances.
I was the only one to hold her when she was having her final moments. I would not have had it any other way as her mother. Holding her in my arms I could tell that the child that I knew her as had left a very long time ago, and that she was all spirit in my arms, and so much of that spirit was going back and forth between her and I. It was flowing back and forth and during that time she was filling me with everything.
I noticed that even a child, a very small human being goes on to the other side alone. They come in to the world alone and they go out alone. What I am most comforted by is that she did not suffer at all. In that very moment there was not any fear to be had, only love.
In the days leading up to her passing I had spoken to her and gotten many things off of my chest. I would encourage anyone to do this if they have a sick child. I asked for forgiveness. If I had failed her as a mother in anyway. I ran down the whole line. All the small and big things I could remember and she would squeeze my finger. When she stopped squeezing I told her I loved her and we would always be together and she could go. She didn’t go immediately. Don’t let doctors or Hospice or anyone rush your loved one off either. They know with the Divine when they are ready. My daughter is with me. I feel no brokenness. Her mission with her family is being carried out. I honor it every day. She was a truly creative soul. Before Calais passed away I made art casually. I also made it with the kids at school or with Calais and her Art therapist. I love the work of the Art therapist. I think what they do is very special. Now I make art like she did every single day and colors fill my home. Art is such a huge part of my healing. Art is life. It does not take a lot to grab a pad a paint brush and let your subconscious go to work for you and begin to create. I encourage you to create. Hang that art on your wall. Spend 30 minutes each day drawing. Spend 30 minutes each day doing a craft and filling your house with colors and seeing the change that shaping your environment with art does for your well-being. That is what this blog is about. That is what my daughter’s legacy is about. She was ahead of her time for such a small child and she lived and breathed art and creativity and left all of that behind with us. This is something that I want to share with you. Send me a photo of what you are doing. What inspires you? What you are working on? Grief and Loss can be a new beginning not the end. It can open the door and be a portal to your loved one for open communication to the divine to explore purpose, healing, community, closure. The portal here is art. From there you may go on to do other things. Find a local Art Therapist if you can and start connecting. If you cannot. You will find things here as I build my daughter’s foundation. Let’s connect. Let’s hold space for each other. Be well together. Let’s continually lift each other up in love. Until next time.
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