Wednesday, May 18, 2016

Dinner with Dad

I wanted to do something special with Coco tonight.  I wanted to have some one on one time with him. I want to talk with him about a lot of things.  I wanted to make sure he wasn't having problems with the current living arrangements.  I wanted to tell him how proud of him I am that he is acting responsibly and maturely.  He is taking care of himself more.  It's not like we wait on him hand and foot.  But he needs to remember the little things will he is being more independent like locking doors, closing the garage when he leaves, taking his medications, getting up on time, and getting to school on time.
         I took him out to eat at Mother Anna's in Pembroke.  I figured he would love the pasta.  He had fettuccine Alfredo on the brain.  He surprised me with an audible.    He chose the chicken cordon blue special.  He loved it.  He then requested to Dairy Twist after.  So I obliged.  He promptly fell asleep upon returning home.  That is a good night, right?

Tuesday, May 17, 2016

Changeover Day

Today was another changeover day.  Demi came down and met us at Hasbro.  Coco was really excellent with things. We had to kill some time after his dismissal.  I had some work to do.  We hung out in the outside courtyard by Au Bon Pain.  He was happy to get a snack and a drink.  I got some work done.  I got to say a quick hello to Gizmo and Demi.  Not long enough though.  I know other people deal with split families all the time, whether through divorce, traveling jobs, or similar health circumstances.  When you are not used to it, it is an adjustment.  I am a family guy.  I like being with my family, my whole family.  It is uncomfortable for me.  But I deal.  I have to.

Monday, May 16, 2016

The Beach House

Coco and I drove down to my cousin's beach house in Naragansett last night.  It was hard leaving the family and cutting the weekend short.  It is an adjustment for us all.  All the effort is for a good cause.  We all want Coco to get well.
     Coco got up and into Hasbro like a champ.  We left in plenty of time.  It was a good thing because Monday AM traffic was thick.  It is just gearing up for that Memorial Day milestone.  The unnoffical start of summer means more and more people, so increased traffic.  Coco was awake and dressed without a hiccup.  We got into the morning check-in interview.  Even though the report was not all roses, Coco didn't let that throw him.  No, he wasn't happy to get the feedback, but he knew it was coming.  And he dealt with it.
     The afternoon was so, so. He fell back into his hermit routine, once the homework and electronic time was done.  I couldn't get him engaged much.  Dinner was quiet.  I did get to read to him a bit, but not for too long.  It wasn't terrible.  So I will count is as a win.  #wintoday

Saturday, May 14, 2016

Weekend Furlough

This is Coco's first weekend home after a full week in the program.  I hope it goes well.  It is so easy to fall back into the same routine once you are home, in a familiar place.  That is not what we want here.  We want progress.  We need progress.  All of us.
      That is not be negative.  It is just sharing a fear.  We hope for the best.  Coco has shown that he has made progress.  We just need to continue it.  His treatment doesn't stop when he leaves the hospital.  At some point, we are going to have to practice without a net.

Tuesday, May 10, 2016

Day 2 - The Program

It was a bit tougher morning today.  I probably stressed more than.  I needed too.  I tried really hard not to show it to Coco though.   We ended up only being 10 minutes late.
      It was changeover day too.  Demi came to take over for the rest of the week.  We met at the hospital.  We also had a joint meeting with the doctors.  First it was just the two of us, Demi and me.  We talked to two of Coco's doctors, but one was a fill in.  I led off with my concern about the dominance of electronics in Coco's life.  The fill in actually offered some good approaches to dealing with it.  When Coco was brought in, the meeting started well.  He gave his thoughts on the one thing that made his parents optimistic and the one thing that concerned his parents the most.  He nailed the positive.  He was not entirely wrong about our leading area of concern but when he found out what it actually was, the meeting got tense.  I could see him getting upset.  I worried that we might lose him. He started shutting down.  But he got through it.  We got through it.
     We then headed to my cousin's beach house in Narragansett.  She was offering to let us stay there. It was such a generous offer. So much so that while we had concerns about it's proximity to the hospital, we almost felt like we couldn't turn it down.  She made it so easy on us though.  She showed us around.  But she also understood that it might not work for us.  Family can really be terrific like that.  Coco loved the place.  It was so much brighter and cheerier than the hotel.  The hotel was not bad, but it is just not homey.  Demi is going to check out of the hotel tomorrow and give the beach house a shot.  Cross your fingers.

Monday, May 9, 2016

Day One with Dad

The Program.  That used to be a running joke between me and my friend, Ringo. Now, it is no laughing matter.  Today was the first day for which I had responsibility to oversee Coco's day to the program.  It went really well.
     Coco got up when asked.  We got out the door and into the car on time. I successfully found my way to the right building (with only a minor detour).  I got him signed in and dropped off.  What was most important was pick up.  Coco was happy.  He had a big smile.  He just started talking about his day.  He wanted to share.  It was awesome.  It was such a difference from the past few weeks.  It was enouraging.  I see that glimmer of hope that things might finally be trending up.

Sunday, May 8, 2016

Happy Mother's Day 2016

Happy Mother's Day, Demi!  And to all the moms around the world today.  Demi, you take good care of our boys.  Mother is the perfect job for you.  The boys may not admit it now, but they appreciate all you do for them.

Wednesday, May 4, 2016

Go Time

We got the call today.  After months of waiting, it finally came.  The Hasbro's Children's Hospital Partial Program gave Coco a spot, pulling him off he wait list.  It couldn't come at a better time.    Things have been going very poorly for Coco lately.  He isn't in school much at all.  It's been really hard for the rest of the family too, especially Demi.  She bears the brunt of the running back and forth.  She handles all the doctors and appointments.
     This program is both a good and bad thing.  It's good that our son needs this help.  We need to figure out the logistics on the fly.  Demi is now driving him to Warwick, RI.  I am booking a hotel room for the next two days, while she drive.  We don't know the area.  But we need a place closer to the hospital.  We can't get him into DHS from home before 11 am now.  How can we expect to get him to Providence by 7:30 am?  We will figure it out.  We have to.
     This is scary.  It feels like our last chance.  Our last hope.  Time to have faith.  Faith in our son.  Faith in each other.  Faith in our family.