Life As We Know It

Just before Thanksgiving last year, my family of 4 was out celebrating my daughter's 6th birthday with dinner, bowling and cupcakes at a local bakery. My husband commented to me several times that evening that he wasn't feeling good. We didn't realize at the time, but he was beginning to have symptoms that were leading him into septic shock from an infection we had no idea was anything serious until it was too late.

A little over a week later he was in the hospital facing kidney failure. It just seemed to come out of nowhere, because his regular bloodwork with his PCP showed no signs of kidney issues whatsoever. Over the next several months we made many trips to varying doctors, weekly ER visits which turned into hospital stays, and then follow ups with specialists all of which included a lot of life-changing, sobering news.

Kidney failure. You don't know how devastating those words were to me. You see, Polycystic Kidney Disease is a prevalent destroyer of my family's kidneys. My mom, my aunt and my oldest brother have had kidney transplants due to PKD. My uncle, my younger brother and 2 of my cousins have passed away from the disease and its complications. So to find out that my husband was in renal failure when he has never had kidney problems before completely rocked my world.

Along with the kidney failure, the sepsis also caused his vision to basically be permanently damaged with virtually no hope of correction by glasses or other methods. The doctor actually told him he could use binoculars to help with watching TV, but then if he does that too much he would damage his peripheral vision which he still has. He has to magnify most everything to be able to read and he has to sit right in front of the TV to see, which is where we tell our kids NOT to sit or they'll go blind. What an ironic turnabout!

In some ways the vision loss has been just as devastating to him as the kidney failure. Without his normal vision, he can't see well enough to read music charts to learn or teach new music to our Praise Team. I have to help read menus to him when we go out to eat. I have to read and respond to his text messages for him, fix his insulin and other medications, etc. The kids or I sometimes have to guide him when we're walking outside because he can't see what is in his path. It has been a major blow to his ego & pride to become somewhat helpless in these areas and especially frustrating that he can't improve his vision quality.

So life as we know it has definitely changed. It has been a roller coaster of emotions with some ups and a lot of downs. After about a month of receiving dialysis which began mid-March, we finally started falling into a routine. We have the system down now. I keep a 'dialysis bag' on standby and just update it's contents the night before treatment according to the next day's plan.

The 'dialysis bag' is a beach bag I use to hold a myriad of comfort items, some for him, some for me and some for the kiddos. The staples are these: a blanket for him because it gets chilly while he dialyzes, ear-buds for his personal TV, meds for his snack, a hoodie for me to cuddle under while I sit in the waiting room, my kindle (thanks for hooking a girl up Marky Mark!), a magazine I keep meaning to read but can't tear myself away from my kindle long enough to read it, the family calendar, a notebook, water/juice boxes/snacks, the kids DSi's and so on.

Sitting and waiting during his treatments has been surprisingly enjoyable. It pauses the constant motion in my week for 4 hours. It allows me to escape in a book or a game, organize my to do list, take cat naps and the most fun and unexpected treat is getting familiar with the variety of interesting people that come and go from their treatments. From the names (Zeke, Ezra, Solomon) to the personalities that you would think would come straight out of one of Tyler Perry's sitcoms or movies, there has been no shortage of entertainment. The kids and I also will sometimes run errands, go to the bookstore, see a movie, or play at Chick-Fil-A's indoor playground during his treatments to give them a bit of a break because of course they get a little more stir crazy than I do, although I have been known to be a little crazy myself.

The kids have handled this amazingly well. It makes me sad sometimes when I think of how much time they have had to wait in Doctor offices. It's not fair that its normal for them to play their DSi's in their pajamas sitting on the floor in the ER room at 3:00 in the morning while their daddy evacuates the contents of his stomach through his mouth for the 2,429th time. (Sorry if you're squeamish, I tried to say it in a nice way!) And I always have to take a moment to swallow back my emotions before answering their gut-wrenching questions like Emmi's "Will my husband get sick like daddy?" or Kellan's "Is daddy going to die?".

I realize some of this sounds so dismal and depressing and honestly at times, it has been. But although in moments we have been discouraged or even distraught, we have continued to encourage one another because we believe we serve a Savior who heals and restores. Whether that will be through Doctors' hands and a kidney transplant or a miraculous turnaround doesn't matter.

We believe all we have been through from the Necrotizing Fasciitis in 2004 to the current kidney failure and other complications has been allowed for a divine purpose. Whether its to reach someone through this blog, through relationships we have established with people at the dialysis center, or for reasons yet unknown, we are thankful that God has chosen us because it means He trusts us. As fallible and human as we are, we are careful to be thankful. God has promised us so much in this life and we know we have only begun and that our latter WILL be greater!

Okay the preacher is stepping down because it's time to go fix dinner. Okay, it's really past time, but I can't help myself when I start writing; it just overtakes me! I just know how overwhelmed I was when we first started going through this process of dealing with dialysis and facing limitations. I did everything I could to scrounge up as much information possible to help my family, to adjust to my role as a caretaker and so on and maybe, just maybe this will help someone a wee little bit in some tiny small way, as well as update those we do know on how things have developed in our small world.

And as a disclaimer of sorts to anyone who may know us, I don't mean to say that my husband is now helpless. He is still as strong willed and independent as ever in many ways, however physically life has changed and it is what it is and I am just being honest about that. Voila. He has some really good days and sometimes he has some really bad days and we are living life to its fullest for whatever each day holds!