For those of you new to our blog (thank you for subscribing!) – we use it to not only update you on events and news in regards to our foundation, but I (Carin) also use it as a landing page for what it has been like for us to live without Ben. In other words, it is a grief journal as well. For it is from a place of continued grief that we live and work. I believe our personal experience of Ben’s absence is part of the “awareness” piece of childhood cancer – what it does to families from whom it takes. So thank you for reading our story – in its various chapters…


Last week Ryan came home from school with peanut butter smeared in his hair and the majority of one leg colored blue. Under normal circumstances I would have laughed and applauded his sense of artistry – but considering that in about an hour a photographer was coming to our house to take pictures of him I wasn’t super thrilled. Just put on pants you say? Sorry, we haven’t worn pants since early April. And he has already informed me that even when it snows he will be wearing shorts. Fine, be cold. This is not the battle I am going to fight. Attempt to grow your hair out though and I will be all over you like spanx. But that is beside the point.

The point is/was that I had a high level of anxiety that day because I didn’t really want to document Ryan as an “almost four year old”. It’s not that I don’t want pictures taken of him, I do. But I also want Ben to always be the oldest. And next month my second born will turn four – an age Ben never got to be here. So documenting this milestone officially in Ryan’s life is bittersweet and therefore, as with most things now, there was a current of underlying tension running through my veins deeper than peanut butter and blue legs.

In the midst of trying to give Ryan a bath in the afternoon (which went over REALLY well) and bribing him with candy to put on something other than a jersey and basketball shorts, two men knocked at my door wanting to evangelize to me. I tried to politely tell them that I didn’t really have time – as Ryan was now shirtless again and running around the house with a bowl full of applesauce. “But didn’t I want to know about a loving motherly God who has been prophesized to come back as a woman?” they inquired. Was my image of God male or female? Could they just show me a few pictures? Their questions persisted. And while I have many theological questions at this point in my life, this was not the time to engage in this particular conversation, nor were they the people with whom I would chose to do so. I have a pastor and his name is Dave thank you very much.

What’s funny is when Ben was sick and I answered the door holding him with no hair, a nose tube and his puke bucket, groups like this couldn’t get away fast enough. But now we looked “normal” so they were not afraid of me…yet. After politely trying to close the door again they began to get very aggressive with me. They said they wanted to know why as a mother I wasn’t interested in what the Bible had to say about God being a loving mother figure. *cue blood pressure rising * Just a word of advice to anyone doing door to door religious chat: it is best not to use the words, “I’m surprised as a mother you are not interested in…”  For you have no idea as a mother what I am interested in. No idea. So as the clock ticked towards Ryan’s picture time, my anxiety escalating further, I had had enough. I said to them, “Yes I would love to hear about the Godly mother you speak of. But considering she allowed my three year old son to suffer a horrible death and die in front of me – I really don’t have time to get into this today. It’s very complicated.” To which they responded, “Have a nice day” and scampered down my front porch stairs.

Yes. I will “have a nice day”. I will chase my almost four year old around and attempt to document the fact that he has now outlived his brother. I will have pictures taken of him alone because he has no sibling on earth to take them with. I will then debate for the next two months whether or not I can possibly bring myself to send out a Christmas card – for I will never have a picture of my whole family ever again.

And my mom thought our family photo sessions were stressful.