Day Twenty Two

James is resting peacefully. The alarms complaining of his irregular heartbeat, his low pulse, and his respiratory rate are no more. He sleeps with Mommy and Daddy in the middle of the bed, our perfect little angel. He's upside down and on his side here- just the way he likes it.

Our first day home confirmed how absolutely right our decision was. James is visibly more at peace released from the shackles of his monitors and his IVs. The only IV that remains is the TPN drip which feeds him through his port, pumped discretely from a bag the size of a small purse. Kara and I change the batteries and reset it everyday. At the hospital before we got home, I worried so much about where we'd plug it in- I envisioned an IV pole with a three hole plug and just knew our fifty year old home with its two hole outlets would never work. It seems silly, but all of these little details hit me because I was so scared we wouldn't be able to take him home. The reality is much more manageable, a tiny pump and a single line. The hospice nurse said she's had some kids put it in their back pack or their purse. It still gives me chills when she uses the plural.

I wish I could say I knew peace. But the truth is much harder. The truth is I have no idea how to deal with what I am faced with, that I simply act because the circumstances demand it and no choice remains. Someone told me the other day they admired my courage. I am not courageous, I am terrified and stumbling through the motions of my life. I am listening to a hospice nurse explain how to provide my son with doses of ativan to break a seizure- but only if that seizure lasts more than five minutes. Otherwise we save the ativan. I am taking delivery of an oxygen machine to provide him with help breathing- he will need the help. I sign and date, placing the machine in the corner by a toy he'll never use again- and it's still singing at me. I still feel in complete shock about my reality- the dreamlike quality of everyday has not abated. To me courage requires a choice, a decision to overcome and move forward. I never made any choice- I never had a choice. James is the one with courage.

Yesterday Kara, James and I had to get our blood drawn as part of genetic testing to determine the cause of James' tumor, which may but probably is not inheritable. I cannot tolerate needles. I literally faint. As a boy during my various hospital admissions, I regularly required either general anesthesia or a team of seven nurses holding me down to get an IV. Mortified as ever, I very nearly did pass out. James took his blood draw with no complaint. He never complains, and when he could, he only stopped smiling for a few minutes. As always, I am humbled by him. It is a tremendous blessing to be his father.

This morning, our hospice nurse came again to provide guidance through our first full round of giving James his medications. She's from LA, and when she told me that it made perfect sense. She has a very calming, industrious earth mother presence. She appears as comfortable in our home as anywhere else, placing her laptop on the dresser while watching us give James his medicines on our bed, using the same tone she used in James' ICU room when she first met us. She's worked with babies with ATRT before. I envisioned a much grimmer scene somehow.

James himself appears much the same. He is not very responsive- as his brain continues to swell, he will become even less so. Yet my boy still loves the same things- though he cannot feed anymore, his highest level of activity comes when we syringe feed him Kara's milk. It soothing power remains. He hates laying on his back, insisting on wiggling until he finds his way to the side. And even now in his long rest he sleeps the same way, legs akimbo and his back arched, a gymnastic display that is comfortable only to him.

Our pediatrician told us yesterday that the oncologists had told her they had never seen in all of their practice a tumor as aggressive as James'. As the physician's assistant told me yesterday, even if we'd begun chemo the day after James' big surgery, the result would always have been the same. I take comfort in that.

Tonight we took James for a walk, pointing out all the things along the way we thought he'd like and talking about what a beautiful boy he is. I believe he can hear us, and I believe he knows how loved he is. Love was our first gift to him, and the only one that matters. None of the toys, the furniture, or the rest ever mattered. Only love. And that is the gift we will leave him with.

Thank all of you for the overwhelming support we have received from all of you. It means so much to us to know how much people love James and care for him. Knowing that he is working in the world means so much to us- we have always believed James is very special, and we are glad you all agree. Please keep us in your prayers, and pray that James continues to be at peace.