~~Nathan~~~

Nathan took his last breath at 9:22 am this morning, in our bedroom right by the windows that shone light on him in this picture the day we brought him home from the hospital

Contradiction

In the midst of Nathan's body shutting down, he has a new tooth pushing its way through. It confounds me.

Already missing him

There is so little of Nathan left. I can hardly remember a walking, playing Nathan. I hope that in the future my memories of him for the majority of his life are stronger than those f the last few days. He looks even worse than yesterday. His right eye is almost swollen shut. he can only keep his eyes open for a few seconds at a time. His spirits are actually good today though. He wants to be doing things even though he can't. Luke took him to 7-11 in the jogging stroller a little while ago for a Slurpee.
Here is Nathan on May 4













May 30










June 2








June 20








July 3








July 13








Now

Thou shall...

So - we got a call from the Hospice Chaplain yesterday. She wanted to pick a time to meet with us. I told her that I needed to talk to my husband because we are not sure we will want chaplain services. She seemed flummoxed and told me that we had to meet with her at least once because she had to document in the case file our "spiritual something-or-other".

Huh? I mean we can't refuse to meet with her? If/when we decide we want chaplain services we have two resources we will use first. One, our own church or two, a friend of the family who is a minister at a local church. People we actually have MET before. We have let enough strangers in our house, like the nurse and nurse practitioner and we are working with the social worker, whom we didn't know. That is enough extra people we don't know to share our feelings with! (not talking about all you people I don't know..I don't have to look you in the eye).

What if we were not at all religious. Would they still insist we meet with her? Geez! Talk about adding stress at a difficult time.

I put the chaplain off until today. I guess I will call the social worker today and ask her what the deal is and possibly have her deal with it. We may be getting a reputation as a difficult family. Oh well.

I went....

At the last minute I decided to go choir to choir practice. It was just fine. They finally put Nathan's caringbridge site in the rehearsal order notes and so most people were up to date and so I didn't have to do much updating. Most left it at "good to have you here" or "you are in my prayers".

It felt wonderful to sing.

Opposite of nesting

So - people say that women "nest" before they have their baby - cleaning and getting things in order.

I spent a whole day doing just that the other day. Anyone who knows me well knows that cleaning is something at the bottom of my list and that I am not very good at, either.

Am I un-nesting?

Nathan slept most of the day that day. Keeping busy is a good thing. When I am not busy, or especially when awake in bed I have to think about things like funerals.

I also have all kinds of absurd thoughts about the timing of things to come and conveniences of the various timings.

I also think about the future and all the things I will be able to do again and the things I can offer Julia and Lauren without doctors appointments, etc.

There is basically nothing I can think that is good these days.

I have the urge to go to choir rehearsal and sing. I know it would be good for my soul. If it weren't for... "people who care about you?" (Luke completed that for me when I was pondering aloud about it). He's right - they all want to support me, but I just don't know if I can handle it. Plus - part of me will wonder if I am being judged for being there, instead of at home with Nathan.

I hope you don't mind the ramblings....I have been updating Nathan's site daily and that

Smiling

One of only a handful of reasons why I am smiling these days.

Sorry Mrs. Bluetooth

So - I was mega-stressed today. Long story, lots of stuff...

pain
too many health care professionals with too many different opinions
19 month old who just wants to be with her mommy
mommy who just wants to be with her 19 month old
pain, pain and more pain
narcotics after narcotics
road construction all the way to the clinic
new nurses
me gaining weight
my way too long hair getting in my way constantly
crappy decisions involving pain suffering and death of my son
consulting doctors not returning main doctors calls

Anyway... I was getting into the car getting ready to call Luke and using my bluetooth headset.

Me: "Call Home"
Phone: "Did you say, call home?" (said in the sugary computer voice)
Me: "Yes!" in the nastiest rudest voice I have

I am taking my frustrations out on the phone now I guess. I t almost made me laugh after I said it. At least no one I love had to be the recipient of it.

The ugly truth

The cancer is attacking the orbits. The pain in his back is excruciating. I just don't understand why a child would have to go through something like this.