Another guest post for the Courageous Parents Network. http://courageousparentsnetwork.org/13-whats-in-a-t-shirt/ As a teenager, I spent hours scouring the Salvation Army and Goodwill shops for the perfect retro T-shirt: musty, holey, faded. Size didn’t matter nearly as much as insignia: Yoda, the Three Stooges, and my long time favorite ‘china’ written in kanji. I wore that shirt… Continue reading Identity | What’s in a T-shirt?
May 2013 Us cancer moms talk a lot about how helpful it is to be around others who “get it”. We always preface this gratitude with “I wish I didn’t know you” because that would mean our kids weren’t sick, but if I am in this at least we’re all in this together. As… Continue reading A New Camp: the year and 1/2 after
Today will be hard and long and filled with tears and hopefully a little laughter. In the days since Kai left us we have been surrounded by the love and support of our family and friends. Our house has been packed with food and drink. Candles have been lite and a fire in the fireplace… Continue reading Phantom cries
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… Continue reading I can see clearly now the rain is gone..
I tried to be patient waiting to hear from Pittsburgh about the trial for Kai, but by Wednesday I was pretty restless. I started going a little nutty emailing our NP rambling emails about the different treatments and how Kai is doing and how I still don’t know what to do. A few minutes after… Continue reading Just looking
Kai has kept me quite busy the past few weeks. For a kid who doesnt do much he sure has a hopping social life! This weekend kicked off the first of the Halloween parties. Which of course meant last minute late night costume making followed by really last minute early morning treat baking so I… Continue reading Let the Fall festivities begin
***Over the weekend Kai and I are back at Camp Sunshine and this time we brought Gigi (my mom)! She has been there to witness most of the awful things Kai has had to endure over the past 16 months I really wanted her to experience some of the good stuff too. Camp is one… Continue reading Camp 2.0
The past few days have been tough on me. Kai is feeling better since we are treating his ear infection, but not as good as I had hoped. I’v been spending my days researching these stupid tumors again. Looking for treatments. Hoping that I can find something that I can convince myself might help him.… Continue reading Getting hard to do nothing
We had a good little stretch there. The week leading up to the wedding Kai was doing very well. He was on minimal meds and he had been doing great with all of his activities. I was really settling into the possibility that we would have many more of these content, stable days to share.… Continue reading ‘typical’ kid stuff
****A week ago today*** Just as soon as I thought things would be slowing down a bit, life has been busier than ever. After a non-stop week of Perkins, respite, VNA, and therapies, we packed up the car Friday and headed down to Connecticut for Uncle Pat’s wedding!! The wedding was just perfect and everyone… Continue reading The wedding!