I am so thankful we made it through the frankenstorm nearly untouched. We lost power for a few hours but didn’t loose any food or meds! It has been overwhelming to see the devastation in our neighboring states. I can’t stop thinking of our friends in PA and NJ and NY. I really don’t know how we would manage that kind of catastrophe with Kai and all of his equipment and needs. I am feeling very lucky to have escaped this one.

Many of us in MA welcomed the quiet unexpected days at home. It’s rare that anyone these days has a whole day without any plans or place to be, especially when you have a medically complex child. I’v enjoyed hearing the stories of our friends embracing the day with their families, cooking, baking and playing games. Just enjoying the moment together.

While I was happy to be snuggled up with Kai Kai and forget all of our appointments for a few days, our time at home was not peaceful and fun as I would have hoped. Kai had been very unsettled all week and as the storm grew so did his pain and my anxiety. By Monday afternoon he was whining and shrieking that awful shriek, grabbing the back of his head. I believe the pressure change in the air was affecting the pressure in his head causing him extreme headaches like ones he had when he was young, before the shunt. I have been worried about his shunt a lot lately. I don’t know if I’m just over reacting but his head looks bigger to me. the bumps and ridges look more pronounced and his forehead seems extra veiny. If I think about it rationally I know that if his shunt were malfunctioning there would be much bigger problems. A clear sign, vomiting, nystagmus, fever, etc. but Kai never presents in the typical ways so I am always on edge about it. It’s a question we always live with. He has had to many shunt checkstiger the last year and they always turn out fine. At this point it is more likely tumor growth that is causing him pain, but I have a hard time accepting that. If it is pressure from the tumor then there is not much we can do to help him. As always I ache to find relief for him. I wish there were something more I could do but after trying all his different meds with little relief I now just hope that his pain will lesson the further this unstable air moves away from us. Time will tell.

Living in brain tumor world is a lot like waiting for a natural disaster. You have to be prepared for anything at any moment. You have to adapt. You have to live with little and trust your gut. You have to rely on others. Become a survivalist and trust that the people with the ‘power’ will do their best to keep us all safe. Preparing for the worst, can be a good little snap back into reality. It reminds us of what is important in life. Knowing if things get bad we are surrounded by family and friends who will be there to help pick up the pieces. Remembering what we can accomplish and endure if we work together. Having a few days like that forced upon us by mother nature can be a blessing every now and then.
I feel like I’ve been doing a lot of preparing for the worst lately, but no matter how much I try to prepaid, I know I will never be ready. No one ever is. Things come up, thing you never saw coming. That’s life I guess.

On Friday, before the storm Kai had a visit from a music therapist. I have been so bad lately about keeping my calendar straight so the visit was a bit unexpected but it couldn’t have come at a better time. Kai and I had just woken from a nap on the couch and we had no plans for the afternoon. Jillian came in with her guitar and bongos and beautiful sweet voice and sang to us. Kai really loves music and it was amazing to see his interest peak and and his eyes widen as he listened carefully, taking it all in. It was a a special moment watching him so interested and content. Between Jillian’s song choices and watching Kai’s sweet angelic face, it was all I could do to hold back the tears.
I have always been a sucker for song lyrics, but listening to this sweet girl playing acoustic guitar singing only for the comfort and enjoyment of my sick baby, words can take on a whole new meaning…