No Shame in Hope

No Shame in Hope

There is a certain member of this family, who, for the duration of his almost two year old life, clearly has demonstrated a moral objection to predictability or monotony in any way. He was not expected to survive past birth, and he did. He should not have made it through his first year, and he did. He should not have made it through a recent four month stint home on hospice with liver cancer, and he did. I don’t know what choice one has with such a child except to let him have his own way, and try again to do what we know to do to help his little body become healthy(ish).  I am completely grateful for, and deeply admire his tenacity, although I personally feel that he may have used his “youngest of the family rights to be dramatic” a little liberally. Do you suppose it is his … Continue reading

In Everything Give Thanks…the Value of “In”

In everything give thanks

It’s the month of November which means “thanks” is all the fashion until we move on to more pressing matters of black Friday sales and Christmas wish lists. I was thinking what I wanted to say about thanks the other night while doing an arobic activity we do daily around here called, changing trach ties. My daughter has a trach (tube in her throat to help her breath) and it is held in place by a tight velcro strap around her neck. This strap has to be changed daily and the skin washed to prevent skin break down and infections. Simple enough. Except that she’s two, and two year olds all seem have a basic need be terrifyingly unmanageable at the most inopportune moments. It’s all four of her extremities thrashing wildly against my very logical suggestions that she hold still. Never mind I’m trying to hold a tube in … Continue reading