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?   

Zoo day...Thanks Angel's Hands Foundation

Today we made the trek out to Hogle Zoo for one of the amazing events put on by Angel's Hands Foundation. Everyone was super excited to get out and see some of our favorite families and people.  Many of them we have not seen since our whirlwind announcement that Sage was going on hospice care back in December.  Many of them have followed and stayed in touch with us via Facebook, but we have not seen them in person.

We don't actively announce to people about Sage's condition.  Most of the time people ask how we are doing and I just give a generic answer...fine.  Some of that is because I am scared of the deer in the headlight look that I get when I tell them.  Some of it is because I don't really know how much to tell them.  Afraid that once I start that I won't be able to stop.  Some of it is because if I say that its fine....then it maybe it will be.  Its just easier to say "Fine".

There are a select few that know that that is a lie. They know that it is rough.  Many have walked a similar road.  Today, many of those people made their presence known, and we thank them.  They don't really have to ask, they just know.  

Our entire family had a wonderful day at the zoo.  I was shocked that we stayed for five hours.  What was even more shocking was that Sage was still going strong (if not on her second wind) when we left.  Mark, Fay, and I were worn out. Currently, as I write, Sage is laying on the couch playing with Mark, giggling away.  

As we drove out of the parking lot, it made me so happy to hear Fay say, "I had so much fun today" and for us to hear Sage laughing and giggling from her car seat.

Note on picture:  This was taken on the way home.  Bandage on her cheek is a really small scratch that she just keeps re-opening.  Looks much worse than it really is.  Joy of not being able to clot..you get to wear pretty bandages, and Mom and Dad have to deal with stares.  Honestly this is better than watching her bleed all day long and Mom looking like she has gotten into a fight with someone (I am who she wipes her face on).

    

Got to restart somewhere

I have meant to hop on here many, many times to restart this up.  Many things have changed since our last post. We have had many adventures, and continue to have adventures now.  I have asked myself how this is going to go in the next couple weeks and months.  Hopefully I do our family justice, and possibly help others going down similar roads.  I have found great comfort in reading other blogs, and speaking to others who have walked this road.  But ultimately, I need an outlet to get some of the feelings out.  I am not a person that writes, but its worth a shot.

Currently Sage is end stage renal failure and is on hospice care.  In typical Sagey way, she is doing this on her own terms.  Defying the doctor's expectations and living life to it fullest.  That is what Mark and I wanted when we started this most recent journey, if not our whole journey with Sage.  We felt quality of life is much more important than quantity of life.  Time and time again she has shown us that she wants to be free to do what she wants to do.  Anyone that truly knows Sage, knows dialysis is/was NOT an option.  She is too active to sit/lay still to be hooked up to a machine.  She made it clear that there was no time for transplant, that was not what she wanted.  Many issues play into why she is not a candidate at this time.  

So here we are walking a walk that no one would ever wish to walk.  But we do it knowing that it is the best decision for her and our family that we can make with what we have been dealt.  Does not mean that we don't re-evaluate it on a daily if not sometimes hourly basis.  We have our moments where we are reminded that we are on a shorter path than we would like, but right now we are trying to do our best do just keep going and enjoy our happy Sage while we have had it.  Hopefully, I can share the happy times, but also the hard times. 

Coming out of the fog

First off I must apologize for being gone so long. I come here on a daily basis, but just can not seem to muster the ability to post.

I think I am finally clearing the fog away and starting to move towards finding a norm again. I recognize that might change, but we are trying.

We did order the "wheelchair" for Sage. I never fully understood what an undertaking this might be. I can remember my parents going through the process of getting a wheelchair for my mom, but I was so far removed from the process. I tried to ask her how she got the process moving along, but she doesn't remember.

We are still working on getting Sage's hearing aids. She currently has "loaners" from USDB, but we need to get them back to them so that some other little child can use them. I can not express how wonderful it was to have that opportunity to try before you buy. Sage is such a complex child that we were not sure that hearing aids would be of any benefit to her. I truly believe that she has been telling us for so long that her ears don't work. Now we have to find a way to keep them on her. She uses her head to scoot herself around, and knocks them off constantly.

Sage also had her initial visit to Schriner's yesterday. They are fitting her for AFO's. I am so excited to see how these will help our little angel. I let Mark pick out the color and design. Hopefully Sage won't hate me when she gets older.

Little miss Fay is doing wonderful. She has started first grade and is loving it. I love to see her excitement. She has a wonderful teacher this year. I have to say this year was hard. The realization that my little girl is growing up and going to school for a full day. But it doesn't even phase her.

Now back to work. Just had to take a break.

Hearing Aids for Sage

Sage finally got her hearing aids. She seems to be doing really well with them. She is actually getting angry when we take them out. She really doesn't pull them out but she does knock them out when she does her scooting. She is also jabbering a lot now.

Amazing what happens when you can hear what is going on around you. I keep imagining that we must have sounded like the adults in the Peanuts cartoons.

Today we had Sage's vision therapist here today. She is so great she works really well with Sage, but I think the most excited person has to be Fay. Fay can't wait for our visits with her. During the visit we have to remind Fay to calm down because she wants to see what fun activities she gets to do. She is such a great helper.

Also received a phone call from the pediatrician. She is helping us start the process of getting Sage a wheelchair. My little 18 lb baby is going to be harder to carry as the days progress. Better get started on the process now.

We are now the legal guardian of Fay

As of Tuesday, Mark and I are now the legal guardian of Fay. She was so happy to hear this news. She keeps saying how happy she is to be living with us, and that she wants to live with us forever and ever till she dies.

Family