Algernon lived long before babies with complicated syndromes were granted a life longer than a breath or sunrise or maybe a moon; but still this lyric was written especially for yesterday when my patient and I and her dear Poppa heard her laugh for the first time. Her Passy Muir valve is a small purple miracle, by allowing the air to got into her trach she gets to keep breathing, but the valve closes and forces air up past her vocal cords. I am not sure who was more delighted.

And that my friends is what keeps me getting up in the morning this week. One more poison session to go, and if I let myself the combination of nausea, tiredness, and financial insecurity would chain me to my to bed more securely than good iron.

What I know for sure is every day can be given a reason, even when my body cries for me to crawl back into bed and just wrap myself in self-pity and nausea and pain, my mind knows I have been given another “now” with which I can maybe leave one life a little better for me having touched it.

We each have a unique collection of balms we can apply to the illness  and despair rampant in our world. I have received so much nurturing since I first reached out;  from simple smiles and PM’s  to a five dollar bill someone thought I didn’t know they slipped into my purse, to the 100$ donation from a woman(who if not on the same  cancer track is certainly getting trained at the same gym, and her soul is Ironman worthy). So I thought I would let you know how I am spending the days you are helping me continue to stack together and tell you about that laugh. Yesterday, I helped parents hear their toddler laugh, watch her sign to Sesame Street songs and take wobbly and unique strided steps, but steps all the same.

My skill set seems to be about empowering the parents of special needs children while loving and meeting the physical and therapeutic needs of the child, all towards optimum outcomes, like yesterday.

You who are parents, think about the joy you felt with the first laugh, the milestone of the first step; now for a moment imagine being told that your child, if they lived, would probably never achieve the most basic milestones. Now hear that first laugh again.

Yup, that is what you are contributing to by being my emotional and for now, financial, safety net my friends.

So thank you, from the bottom of my often tired little nurse’s feet.

Now I shall go throw up and shower and go do it all again.

I really do love my life!