July 16th

Yesterday we spent waiting to figure out hospice arrangements.  Basically we had a big fiasco in trying to figure out enrollment and decided to take him home today instead.

Rowan was definitely starting to sleep more and feel a little more crummy.  We asked to make his morphine more frequent.

I freaked out yesterday.  I called the hospice nurse (and I think all hospice nurses must be angels) sobbing because I kept thinking “but what if he can get better?” We knew he wasn’t hungry, but it was so hard for me to see him getting fussy and upset and not suddenly say “DO EVERYTHING!” because this is so overwhelmingly sad.  I have started crying more.  Just because I am

1) So very very heartbroken and sad that this is Rowan’s fate.

2) So very very thankful and joyful that his ending is so magical.  The day after we decided to go the hospice route, Rowan started crashing, and became this beautiful happy son we wanted so desperately to spend time with.  And we did.  For three whole days he played and cooed and laughed and smiled.  And now he is sleepy.  Who could ask for anything more peaceful and dignified? I cry tears of thankfulness frequently.

Today we were trying to get him discharged. Our hospitalist (different one now as they had a shift change) stopped in to tell us that he was going to make phone calls to get things moving and that he was also going to act as our advocate to “The Sisters” regarding our decision not to use TPN.

I still felt sick that this decision was being so hotly contested.  All I want…all I have ever wanted, is what is best for Rowan. Every decision we have ever made has come from our hearts and been full of love.  And none of them were easy.

I left the hospital for a while to get drinks for us.  Doc called to tell me that the hospitalist came by.  He’d explained our situation to the sisters.  After hearing Rowan’s situation, story, and our reasons for believing TPN would hurt more than help, they not only agreed with our decision, but said to tell us they were proud of the way we have lovingly cared for our son.  If I ever see a nun again I am going to hug them for a borderline inappropriate amount of time and thank them for being a pillar of the teachings of Jesus and showing compassion and love towards our son.

We brought Evelyn up to the hospital for Rowan’s last discharge.  I took her to all her favorite places.  She played in the tunnel in the lobby, looked at the giant flowers outside the window, and got a sticker from security.  She helped us carry all of Rowan’s toys and clothing out.

And then,

as we left,

we said goodbye.  “Good bye Rowan’s Room.” “Good bye nurses.” “Good bye flowers.” “Good bye golden flower on the door” “Good bye elevator”…

And then Rowan stopped making noise.  Doc stopped pushing the stroller and he, the nurse, and I all stared.  Then Rowan started to move and we all let out a sigh of relief.  Doc laughed and said “Well, that would have been really fast.” Then I looked at the nurse and said “What a horrible end to your shift right?” And we had a good natured laugh about the fact that we all for a moment thought Rowan had died.

As we left the hospital, we all yelled, ”Good bye hospital.”

On the drive home I told Evelyn “Rowan will not be in the hospital again.  We won’t go see him there anymore.  Rowan is coming home.  When Rowan dies, we won’t see him anymore, but he won’t be at the hospital. He will be dead.”

Evelyn responded “I know Mom. Rowan is dying, but he’s not dead yet.”

“Exactly.  Let’s go home.”

So home we are.  Rowan is sleeping peacefully in his own bed.  We are watching Robin Hood Men in Tights. 

Tomorrow the hospice nurse and our beautiful home health nurse (who visited Rowan in the hospital several times and has offered to be here as our friend if we need her) will come by.  We will have nurses here at night to take care of Rowan so we can sleep.  We will love him in his last days.

“He came naked, by night, alone and very hungry; yet he was not afraid.”

That quote has stuck with us for all of Rowan’s life.  Doc told me today, “As Rowan leaves us, he won’t be naked, he won’t be alone, and he won’t be hungry…and he is still not afraid.”