A Good Week

Feeling pretty good this week.  Lots better than last week.  Last week, I was burnt out.  And it all came to a head on Friday when Ron had a fever and was not doing good.  My stress level was through the roof.  Then he pulled through and had an okay weekend.  My brother, Dustin, came out Sunday and became the first person to request an in-depth, full-length, hands-on tutorial on how to provide care for Ron in my absence.  This led to me feeling able to leave the house for a longer duration on Monday.  After taking him to the hospital for paracentesis, I went out for just over five hours with my sister-in-law, Carrie, to celebrate her birthday while Dustin stayed with Ron.  Ron loves hanging out with Dustin, so it was good for him.  And Carrie and I enjoyed an evening of indulgence using Groupons and Kazoopons I had purchased that were nearing their expiration date.  She and I spent an hour in a hot tub garden, ate Indian cuisine, walked, talked, shopped a little (for Ron’s upcoming party), and enjoyed frozen custard.  It was a much needed evening of relaxation and enjoyment and “girl time.”  It set me up to better deal with life through the week.  I have stayed in a good mood and have been more full of gratitude. 

Ron and I are blessed with WONDERFUL volunteers through hospice who stay at the house with him on Tuesdays while I go into town for therapy and grocery shopping.  While the wife of our volunteer couple stays inside to be nearby if Ron needs her, the husband does a fantastic job mowing my yard.  They are both very sweet and it shows that they genuinely care about Ron and I.  Tuesday evening, we also had a visit with a doctor through hospice who came to the house to meet Ron.  He gave us information we had not yet heard about why some of Ron’s medications may not be very effective.  We learned that Ron needs to again focus on increasing his protein intake if he wants to stay on these medications, which are diuretics to help with ascites and edema.  Since talking to the doctor, Ron has made a more conscious effort to “graze” throughout the day, eating small meals in order to prevent burning belly, and making sure he gets at least a little protein to improve med efficacy.  We discovered that Bolthouse Farms makes some tasty and healthy protein drinks that he can tolerate much better than Ensure (which he was getting a little burnt out on), so that has helped, too.  Meeting with the doctor also yielded the addition of a new sleeping medication, which Ron hasn’t started yet, and an increase in his long acting Morphine from twice per day to three times per day.  Since increasing the Morphine, Ron has experienced less liver and kidney pain throughout the day.

Wednesday and Thursday were days for resting and gearing up for the birthday party this weekend.  I made a fire in the wood stove both nights to keep us toasty.  We ate take-out, thanks to a grant our hospice social worker got for us, on Wednesday and also enjoyed an overnight visit from a friend who is preparing to go to Afghanistan in a few months (we live near his National Guard post).  Oh, also on Wednesday, I colored my hair at home - flaming red in honor of Ron’s birthday – he has always loved it when I go red, which happens only once or twice a year.  Ron got a shave from a hospice home health person on Thursday; he says he feels more human again.  I stayed very busy both days with party planning and household chores.  I feel so blessed to have dedicated friends, Laura and Kim, who are helping out with the party and taking care of much of the detail and preparation work for me.  I am seriously lucky and don’t know where I would be without them.

Today was busy with a visit from the social worker in the morning.  She came to drop off cash from the grant she obtained for Ron, to help with the cost of enjoying a few take-out meals and with iTunes money for Ron so he can download audio books.  We discovered that Audible, where he had been getting his books, will only allow a monthly membership gift and this means enough prepaid credit for only one book per month.  Not knowing how long he has to live and wanting to read at his own pace and not be limited to one book per month, iTunes made more sense as a way to use this grant money.  The grant, plus all the iTunes gift cards he has been getting for his birthday, means Ron is flush with credit to listen to whatever he wants as much as he wants.  He is a very happy boy right now.  This afternoon, we went to the hospital for the second time this week.  One of the nurses, who shares his birthday and has been very kind to Ron, got him a few birthday surprises and a card.  And, he got a card signed by all the staff who work with him; they generously included some birthday spending money.  Again, he was really happy.  The Borgess staff have made him feel better about going in so often for what would otherwise be a real drag of a procedure.  It has become a place he doesn’t mind (and maybe even looks forward to) going. 

All week, birthday cards and packages have been trickling in, making Ron feel extra special.  In addition to birthday cards, we also continue to receive cards, checks, and gift/gas/grocery cards from people wanting to offer financial support.  Again, I feel so much gratitude for this help that is pouring in from near and far.  People I know well . . . people I have not talked to in years . . . people I have never met . . . I am so overwhelmed by the kindness we are receiving.  It is much needed and MUCH appreciated.  I especially feel a need to give a shout out to a family in Ohio that gathered together and managed to cover an entire house payment with the check we received today.  Wowsers!  Just as meaningful as the money they sent is what this friend, who went to college with Ron, wrote to us: “With each dollar comes many, many prayers for you both.”  Man, it’s a lot of money and a lot of prayers . . . I am just so humbled and thankful.  All of this support makes me feel less anxious about the fact that I am off work without pay.  It makes me feel like this arrangement will work out.  It makes me feel like we will get through this with support from others.  I am not trying to sound lazy or complacent to stay home and let others take care of me or like I don’t want to pull my share in the world.  I most certainly do want to work again and cannot wait until I am in a position to pay it forward for someone in need the way folks are doing for us.  But, for now, I know I am right where I need to be and I cannot work.  So, until things change, I remain in humbled awe with how humans pull forward and selflessly take care of others who are in need.

I keep rereading the above and I feel like there is no way to adequately express in words the gratitude I feel for prayers, good thoughts, supportive cards, financial support, and just all the love we feel from those who are following our story.  There are some really, truly fine people out there in the world!  This experience is one I wish I didn’t have to go through, but maybe what I needed to contrast with my jaded, cynical side.  I cannot ignore the fact that there is good, light, and happiness in the world.  I just cannot.  I have to accept it, and I do, happily and humbly.  Thank you to every person reading this and to every person who has reached out in whatever way felt right to them.

So, I should probably stop writing and get busy.  I have dogs that need a walk and then I need to get to baking for tomorrow’s party.  Ron and I are both so excited to have what we hope is a most epic birthday party for him.  I am so happy he is turning 30.  I am so happy we have had time together beyond what anyone anticipated.  I am so happy that many of his friends and family are coming out to celebrate with him and show him their love.  I am so happy that those who cannot make it are reaching out and sending him cards.  We have both been giddily distracted with the party plans all week.  Here’s hoping for a great day tomorrow!  Much love and gratitude to you, dear readers.  I am lifted up and feeling inspired this evening.  Cannot wait to post about the party!