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.