Steps

It's been about a week since I've written, and yes this is indicative of our last week of life here in AZ. Our realm shifted from the hospital out into the big wide world about three days ago and I have been Phil's primary caregiver.

So here we are on the other side of the hospital doors. We spent 17 days and nights at the Mayo Clinic Hospital in Phoenix. The last two days were particularly grueling as the hospital staff kept me on the edge of my seat the entire time. We didn't find out we were actually going to be discharged until 4:30PM (the night before release) and we’d have to switch rehab centers at 5:30PM (again the night before). This last week has been another steep learning curve in patient advocacy, standing up for our rights to medical records, etc. and trying to figure out how the heck we would live life outside of this place?

But alas -- at around 2pm on Feb 9th we were "discharged". We were both so exhausted mentally and physically from the hospital experience and both apprehensive and nervous about life out here. There were two important factors surrounding this concern:

1. Supposedly you can't ever be transferred from and acute rehabilitation setting to another based on insurance (so this was our last chance at acute rehab) and

2. I finally had to deeply accept that we were leaving, ready or not, and that right now Phil is a new person. Deep down he is still Phil -- but right now he really needs to heal and learn English again.

Although, once I finally accepted that we were leaving I became equally relieved that real "healing" could begin. The hospital helped save Phil’s life and stabilize him initially but can only go so far. I have much gratitude for the initial stabilization and care. However, hospital grounds are naturally a circus of emergency scenarios constantly swirling around and they are not very restful. This hospital doesn't have a maternity ward either so it is more focused on the other end of the life spectrum. There is a lot of broken-ness, sadness, and grief circulating around, everywhere you look. I honestly think tears alone water that therapy garden out front.

We survived and we have made it into this next realm! Phil has been sleeping soundly (and a lot) on a bed that honestly feels like a cloud. We have made a few excursions out to the grocery store and to run a few simple errands. First time this was not so good as Phil almost passed out from the stimulation although the next time he had the stamina to pick out a few vegetables alone and wander off to a new aisle by himself. We’ve also visited his new temporary rehab center and yesterday went to a botanical garden and met and old friend from Portland, ME (who is vacationing here in AZ). Huge steps.

Two steps forward, one step back, and two steps forward again every day. Staving off deep depression is my biggest concern right now. I am trying to keep both of our spirits up but who can blame Phil for occasionally being sad that he cannot read, write, or speak well at the age of 56? And who can blame me for occasionally feeling quite overwhelmed by this whole scenario and being very pregnant with baby coming soon. On a positive note, Phil is walking a bit more every day, he is playing his flute (quite loudly!) every day, and is beginning to be able to read a little bit. He says he can comprehend the words he is reading but cannot say them well or remember them afterward -- the brain is a strange thing!

Lo and behold -- we're coming home to Maine on Feb 24th! I am feeling more and more ready to soak up our community love and get ready to have this baby (only about 7-8 weeks to go!). The initial shock of this trauma is wearing off and the dust is slightly settling (although the windstorm still abounds).

On a logistical note we’ve received many beautiful cards and photos thus far, thank you. Some folks have mentioned items are on the way but sadly the hospital won’t hold or forward any mail. If we didn't get it in time you may be receiving returned letters. Please send them along to our home address. We’d love to get them!

Phil James and Lara Schneider
28 Eastern Promenade #8
Portland, ME 04101

Our mail is being held by the Post Office – so send them right along.

Closing out this posting again with -- gratitude. Huge heaps and loads of it for every facet of support from each and every one of you cherished people.