It was fall when we brought our little baby girl into this world, actually in just a week, on October 6th she would be turning 4. And this is the time that Kiwi, as we knew her, left. I know it is believed by some that when a loved one passes they are still always with you and you can see them in the butterflies and the stars and I do believe that, but I have to admit sometimes that can make me feel almost more upset. If you are a momma, used to holding your baby close to you, that just isn’t enough, I mean how could it be. It is as if all the changes that come along with the world moving into Autumn, triggers such strong memories that I almost get knocked to the floor. Then the grief comes rolling in like a train unstoppable and it's so hard to come back out of. I remember this time last year we were getting ready to celebrate a small birthday with family. I enjoyed shopping for gifts for her and making her cake with mini kiwi fruit on it. I also remember the pit in my stomach as she continued to have focal seizures in her leg as we were signing “Happy Birthday” to her. Soon we would be starting to pack to move home across the country to put our daughter in hospice care. We continued to have such high hopes that we could cure her. In the fullness of the fall Kiwi carved little pumpkins with a butter knife and we raked a huge leaf pile that she played in with her brother. We never actually got rid of it and the grass stayed yellow there all summer as a result. Sometimes I would go lie there and try to feel what it was to play with her and hear her laugh again. She really seemed to enjoy the season despite her continuing decline physically, there was almost a sense of peace about her. I felt so close to her, like she was more herself than she had ever been. That made it harder for me as she began to be in more pain and become more sick leaving me helpless to slow it down. Realizing that we may have no more chances, that we used our last one up and didn’t even know it. A lot of times you don’t hear about what it is like towards the end because you just really don’t feel people could handle or even comprehend it. But those are the memories that haunt you the most, the ones that keep replaying in your mind when you try to sleep at night. The ones you don’t talk about. I wish so much that she didn’t have to be in pain at all and that my kisses and hugs could have taken the boo boos away. Instead we had to use Morphine to keep her asleep and Ativan to keep her from seizing. All I could do was hold her and sing to her, telling her she was so brave and doing such a good job and I was so proud of her. I miss her so much and I wish she could still be here as my little Kiwi but with no pain and no cancer. I close my eyes a lot and really try to imagine how it would feel to have her walk in the door, tug on my pants for me to pick her up and hold her so tight. I would never let go. I hate that it is becoming so far away. The time turning into distance between when I last physically held her in my arms or hummed to her while she nursed. I feel anxious about the fact that I won’t be able to say this time last year she was here. Life just keeps moving and I can’t stop it, I can’t turn it back just practice how to be present, how to feel her the way she is now. How to embrace the energy of her all around me in a new way, hoping it can someday fulfill my longing, ease my pain. The last 10 months have been so strange, a bit of a blurr. Almost as if they really didn’t happen because she wasn’t here, almost as if we were pretending. It is very difficult knowing she would be turning 4 yet I have no memories of her growing up into a little 4 year old girl. It is really incomprehensible still. I want her here with me, I love her so much. She is my light, the light I will always follow. My heart, my baby girl forever and ever and ever.
Today is the last day of Childhood Cancer Awareness Month and I hope that everyone could find a way to somehow be involved in this. Even if it is just to read a story or send a prayer. I personally have been struggling some on how I stand in the Childhood Cancer world. With Kiwi we did many alternative things that we had a lot of faith in. That has left us feeling lost a bit on where we stand and unable to offer much, as far as information and approaches to other families. Our main goals lately have been getting our lives back together in the many ways it had fallen apart so that we can have a good foundation. We found that this is very important right now and will help us inside of discovering what we would want to offer these children and families with cancer. I remember being there, so desperate to find a way that would ‘work’, and realizing there really wasn’t much, if any, guidance for what actually has or does 'work'. It is still very much an experiment wherever you look, but there are some people who are becoming more successful. We are hoping to follow their stories and support them in ways that will offer a realistic approach that we could recommend to other families. Along with that I have been working on what else I could offer. We use to do a lot of fun yoga songs and games with Kiwi. We would watch yoga videos and Kiwi would follow along as she was physically able. It felt very enriching and therapeutic for her during that time and could be for others. This summer I decided to become a Children’s Yoga Instructor and am pursing another Yoga Certification this coming year in hopes to bring it to children and families battling cancer. I have many ideas blooming with that, such as providing children with yoga mats and other fun things. I am also taking a Waldorf based Early Education Course. Waldorf Education is an amazing approach to nurturing children. I hope to bring this aspect to children as they go through this experience for I know that can be absent but needed. Will has also been moving forward in many amazing ways. Taking courses in natural and green building and getting a job with an amazing green building company hoping to be able to create healthy homes. I am excited to be able to imagine making a difference as I know it would have made a difference for us. I am sure as we pursue these paths, more and more will keep coming as I can feel that there is so much we can learn that could be beneficial. Even if it doesn’t offer a cure, it can offer something else that I know is so very important and we are getting closer. I have recently stumbled upon some amazing organizations that seem to come from similar ways of thinking, they are ready for a change as well. I am hoping to join forces and see where all this can take us, with our angels following close by. I will include some links below to these organizations and if you feel the urge to donate anything in Kiwi’s memory for her Birthday or Memorial please do so to one of these organizations. Thank you once again for listening and please lite a candle for my baby girl as the season progresses.
A great organization that provides free alternative therapies to pediatric cancer patients in the New England area.
A amazing family with amazing story who created an organization in honor of their daughter with the focus of finding better ways to treat pediatric cancer. If you are on FaceBook they have a great FB page as well that has tons of tips on how to support the cause, children and their families.
A little girl who we follow that has the same cancer as Kiwi. They are on the forefront of many alternative therapies a lot specifically around gene therapy. Please support as she forges on.
Follow and support little Cashy as he continues to fight cancer. They are doing many alternative therapies and are just amazing.
An organization out of the UK whom have had great results with the children they support and work with.
A great place to get information on how to limit our children's exposure to cancer causing chemicals. The founders lost their daughter to cancer many years ago and have started this in her honor to help other families prevent cancer in their children.
A film to be released tomorrow focused on informing the world about pediatric cancer and raise awareness. Become Informed!!!!
There are many many more out there, probably some I don't even know of. Please support and if you do find more make sure that they are directly supporting pediatric cancer as funding is very slim compared to adult cancer.