There is something about an Arizona sunrise/sunset.  I’m not going to say they are the best in the world, I think all sunrises are probably beautiful, but the color palette of an Arizona sunrise in the fall is a sight to behold.  I loved the mountains in Utah, but the wide-open valley of Phoenix makes the sunrise seems like it goes on for days and with very little cloud cover you often get a fully uninterrupted view of the majestic hues as they transition from blue to purple to red to orange.    

Sunrises and sunsets are as synonymous with Arizona as Snowbirds, Saguaro cactus and the Grand Canyon.  I’m no scientist but the dry air, temperatures, high level storm systems and particulate in the air play into the wide array of colors or so says Google.  All I know is that they are breathtaking, and it seems silly for me to say that even though I’m up at 5:00 AM 75% of the time that I hardly ever stop to look at them. 

This last week it dawned on me (quite literally) as we were driving into the hospital that I have probably seen the sunrise more over the last three weeks than I have in the five years we have lived here.  That’s mostly due to the frequent early trips into the hospital where we are coincidentally leaving when its dark and driving east while the sun is coming up.  You literally can’t miss it.  On a few of those days when we weren’t taking Will to the hospital, Zach and I were making the same drive at the same time to go to car shows in Scottsdale. 

Not surprisingly, I chose to complain about this fact.  After all the sun seemed to be intent on burning my eyeballs right out of the socket despite my sunglasses and the only reprieve was a delicate angling of my head to create a narrow opening between my sun visor and the rear-view mirror to block most of it out and allow me to actually see the taillights of the care in front of me.  The visibility isn’t great, (Don’t worry, on a typical Phoenix morning we rarely get up over 20 MPH on the freeway 😊) but it’s the best I could do.  Then it hit me (this time not literally), I was choosing to complain about the beauty of nature. 

Lately I am trying to focus on spending time each day trying to find the silver lining in everything we are going through.  From there my perspective changed.  So rather than dread the sun in my eyes I could choose to take a different view and appreciate it for what it was. 

A different point of view is about the only way I can keep my head above water these days.  I get asked multiple times a day how Will is doing and how we are doing.  It’s a loaded question that I doubt anyone asking wants the full bluntness of the overly honest answers I tend to give.   The truth?  We are incredibly grateful to be home…but…

But it’s hard.  Dumb answer, I know.  How about it’s exhausting?  How about there is no relief?  How about how I was irrationally angry when I hear all the cool places family and friends went to over fall break while we were pulling our hair out in the middle of the night.  How about it will be like this for six to twelve months…

Mentally, physically, emotionally…we are drained.  It’s different than being in the hospital of course, both are tiring and being home is better in most every way, but coming home means Kim and I took on the responsibility for Will’s health.  That means 20 + pills a day administered at least every two hours if not more frequently. That means TPN and Lipids being administered through his broviac every day.  That means creating a sterile environment and taking extra precautions as we flush his lines, clean his microclaves, hook him up and take him off the lines.  That means Will being hooked up to an IV stand for eighteen hours a day and needing to help him move his IV stand around on the carpet upstairs every time he needs to use the bathroom (which frequently occurs in the middle of the night go figure 😊).   That means fighting with your son dozens of times a day to just take his next pill when there is no alternative.  That means Will is getting so worked up and gagging on his pills that he throws up. (and up and up and up and up….).    

But (and this time it’s a very good but), but the transplant appears to be working.  His numbers are improving, his platelets are climbing and staying above 100 for the first time in more than a year.  At times, he seems to have more energy and be more Will like.  At the time of our last update, I was questioning if the transplant was going to work to solve the problem we started this whole journey with and now that there is signs of positive movement there is an overwhelming sigh of relief.

So just like the sunrises, I can either choose to complain that it’s blinding me, or I can see it for the majesty that nature gives us and appreciate what we have.  I can either be beat down by the negative aspects; the exhaustion, the sadness (the throwing up and up and up), or focus on the positive and be amazed at our bodies and the magic of medical science.   I think it’s safe to say from minute to minute that we do both.   

We certainly aren’t out of the woods.  Will still won’t eat, so there is no end in sight to the TPN/Lipids being administered for his nutrition and that means no end to being connected to his IV lines for 18 hours a day.  It’s a bit of a chicken egg situation I think.  He won’t eat because his nutritional needs are being met but we can’t stop giving it to him until he eats.  (If that doesn’t sum up a lot of what we are dealing with I don’t know what does). 

He has an abnormally high heart rate that tends to spike right when they need to do the first vitals of the morning and that combined with the frequent mildly high temperatures are keeping the doctors on their toes, the insurance company business and more than a few pockets well lined this holiday season as we continue to go through test after test and lab after lab to be on the safe side. 

He has a huge emotional barrier right now, and rightfully so, but the mental side of health is a whole different animal to the physical which I feel like we have a great grasp on.  We are attempting to treat him for both as best we can and both need to be healed. 

But right now, in this self reflective moment, I can choose to see the miracle in all of it.  That he will get better.  That the suffering will all go away, and it will have all been worth it.  The next time I take his pills in though I might be seeing the other side 😊 

We are good.  We are blessed.  We are lucky.  We are loved.  We are happy.  Life is an amazing juxtaposition of emotions, and we’ll continue to hang on to the bumpy ride and hope for the best.  I’ll be thankful for the ability to take in as many sunrises as I can while we do it!