Ups and downs

We are trying so hard to live our life to its fullest when we can.  We had our times where we let this "hospice" thing close us up in the house.  We were just sitting around waiting for our baby to pass.  It was agonizing.  We spent our days not sure what to do with each passing day.  We knew we wanted to keep Sage in her routine as long as we could, so she continued to go to school, I continued to go to work, Fay continued with her activities.  But we wouldn't make any commitments to anything else.  Weekends were spent at home.

But days turned into weeks, and weeks turned into months, and we realized that the world was continuing to go on around us, and we were missing out on some great opportunities.  So....we have tried to join everyone else.  We know that we can't jump right in.  There are days, like yesterday, that we have to give Sage a day or two to rest. 

Friday, Mark and Fay went on a fishing trip.  Mark spent the week leading up getting ready to go.  They went down to Utah Lake with another father-daughter team on their boat.  It ended up being too windy to fish, but they spent a couple of hours on the lake.  Some well needed time, enjoying life.

Saturday we all got out of the house to watch Fay's soccer game.  Initially, because they were going to be fishing, Mark had handed his coaching hat to another father, but since Mark and Fay returned early, Mark was sucked back in to coaching.  It was a nail biting game, and Fay did a wonderful job.  A little colder than usually, but we all survived.

Since we didn't want to stay inside for the day, we went to various locations to test out Sage's new mode of transportation ...BOB.

We all loved it.  Sage loves the suspension, and she loves when Fay pushes her around.  We went walking around a Kids Safety Fair, then went and walked around a trailer store looking for more parts for our work in progress....our tent trailer.  Finally, we found ourselves rounding out the day with a walk on the boulavard (Bountiful Blvd).  It was a wonderful day just hanging out together.  Watching Fay run as fast as she can and Sage squeeling with delight. 

Yesterday we had a down day.  We had intended to go to the Primary Children's Benefit archery shoot in Mantua, but we all were pretty tired from our outings on Saturday.  Someday I will post a picture of how we do these shoots with Sage.  It is really a workout.  To give you a hint, it includes our Deuter Kid Comfort III Child Carrier and a whole lot of patience.  But it definitely puts the FUN in fun shoots.  Great workout for all of us. 

Sage had a little bit of a rough day yesterday.  Electrolytes were off so she was really sleepy and had some muscle twitching, and a slight temperature.  These are the days that remind us that her body is not working the way it should.  Its on these days that we are smacked in the face that we don't know when or where.  Its on these days that I am sending texts hourly, to her hospice nurse, on what she is doing and how we can help her stay comforable.  Its in the middle of those conversations, that I am reminded, that we are not suppose to be doing this.  We are not suppose to be thinking, was yesterday the last time we will see her laugh and smile. 

But then I think,  "We did it.  We got out there and did it."  We did "normal" things. We laughed, we ran, we smiled.  We made memories.  Isn't that what we should be doing?