Sept 14, 2016 (Sara)

It’s incredible that complete strangers are able to give SO much. Maybe what’s even more unfathomable is that SO many strangers can make such a big impact by offering just a little. I find the phrase “every little bit helps” to be absolutely true in our little family’s case.

I’d like to thank Kelly Schnaible for a wonderful gesture of love, support, and awareness. Kelly and I grew up dancing together and have been friends for a very long time. She is a wonderful woman, friend, and mommy; one that has had her own trials to overcome and mountains to climb. She teaches at Manogue High School in Reno and tonight they are having a skate night fundraiser for Maya. She recently texted that over 300 kids are there…skating away for our dragon. I imagine all of them have no idea who Maya is. No connection to her aside from their teacher. But there they are. And they are sweetly caring while learning a little about childhood cancer. At least that it happens.

Hearing about how many people are there tonight reminds me so much of the Yogurt Beach fundraiser. So many people! And so many strangers! I really wish I was able to thank everyone. I want to thank everyone who donates to the go fund me, buys Maya love shirts, sends checks. All of you who say prayers for our family. Who use imagery of healing. Some of you have sent messages to me letting me know that churches in Europe have candles lit for Maya. Prayer circles. Meditations. Drum circle chants. Dances. Choreography. Bike rides. Blood donation. Gifts. And more! So many more!

There are so many people who are lifting us up that it almost feels strangely unbelievable.

For tonight’s fundraiser, we were asked to film a video. I imagine to succeed with a fundraiser like this, they needed us to introduce ourselves. Also, I appreciate that it brings about the idea of awareness; it’s not just about the money. It continues to feel awkward to accept money but when there is a chance to spread awareness, it doesn’t feel so strange. Kelly and the rest of the team putting together this fundraiser didn’t know how great their timing was. They didn’t know that September is Childhood Cancer Awareness Month. I didn’t know either until just recently. Awareness will help to encourage the community to engage in a very important part of the world. Our children. Some people find it uncomfortable to look at the cancer children on the commercials…I don’t blame them. But when it’s someone from your community, I think it feels a little more relevant. It’s a more intense realization. A video was necessary to make it real and not just hypothetical.

Scott and I found it quite difficult to recap our journey over the last 7 months. A video may seem easy for us to film. I mean we’ve journaled many entries and have had the opportunity to put our fears, loves, and understanding of this disease down in writing…why would talking about it to a camera be any different? After many takes and tries, Scott and I sent a long a series of videos (videos that most certainly needed editing) describing what leukemia is, the treatment of it, and how it has impacted our lives.

After revisiting this journey out loud, I almost felt weaker. Not weak because I haven’t handled things in a strong way. But it was the first time that I have felt the actual stress. I imagine it like endorphins protect us from pain…my dragon’s breath has protected me from the sense of weakness. But…we have been seriously stressed. It’s going to sound strange but I might have just noticed that.

Scott is an incredible rock. His roots reach the center of the Earth and if it weren’t for him I would have toppled over long ago. I am strong because of many people but especially Scott. That being said…I think it might be finally time we let ourselves actually grieve. Not the initial traumatic grief that we silently faced in the hospital or in those first few months of dealing with Maya’s drastic changes. I think it’s time to reflect on what is really happening in our hearts and minds now…and how we will continue to cope. Perhaps for our lifetime. For the past 7 months we have been in survival mode. We have been dealing with a crisis. And it is not sustainable.

I’ve been trying to make some changes. Drinking less wine (I most certainly used it as a coping mechanism…obviously not the best choice) and have started to work out again. I went to a gym (Kaia Fit) for the first time this week. It’s different enough from dance that I’m distracted. And after three days in a row I’m more sore than I have been in a long time. It isn’t the typical release that my body gets from dance. Laying it all out on the floor is therapeutic for me but my body and mind have needed movement. At the end of my first class I felt the absolutely crazy sensation of gritting my teeth, sweating, working so hard, pushing….and then crying. Yep. Totally started crying. I’ve cried while dancing. Even in a yoga class…but from squats and push-ups?!? Oh man. These are good changes.

It’s been a long 7 months. A somewhat dark and uncertain 7 months and it is incredible to me that we continue to receive amazing Love. I have always said this is a marathon but it’s easy to forget when your child isn’t the sick one. I truly feel blessed that we have continued support from so many people. Without the support we have from all of them…all of you, our dragon family would be among the rubble. We would not be flying and rebuilding our kingdom.

Maya is good. She’s eating, playing and learning. Lincoln is good too. He’s being a typical boy and testing like a toddler. As challenging as both the kids are, it’s so nice to see them act like regular kids most days. We have a new “nanny type” friend named Amy. She’s with the kids two days a week now and it has helped our family take a breather. Maya’s grandparents are priceless…but even they need a break once in a while.

Love is Life