Reflections Part 1

It has now been a full year today since we started on our Roller Coaster Ride of Uncertainty.

One year ago today, I was just waking up on a couch in the ICU at Bingham Memorial, Lot had had his first of many very painful cycles of dialysis, the kids started the shuffling to anyone willing to watch them for hours on end, we still did not (and still have no idea, one year later) know what caused Lot's knee to swell to 4 times the size it should have, and one year ago today, our lives, simply put, were turned upside down and ended as we know it.

We will never again be able to just up and go somewhere overnight. Not that we ever really did that, but now, we have to take into consideration all the dialyzing supplies that need to come with us, the machine, a box of dialysate for each night we will be gone, a cartridge that contains all the tubing for each night, a 5 gallon gas can (you get funny looks taking that through a hotel lobby, by the way), a drain bag, sanitizer, masks, caps for Lot and the machine ends, and a small suitcase full of medicines and supplements. It takes up a ton of room, (not to mention the fact that those boxes of dialysate are very heavy!), so while we have traveled and stayed overnight a handful of times, it is easier to stay home and bask in the glory that is 3 noisy kids, all hungry right after they eat a meal, and just watch them as they throw a bucket of Legos up in the air and not care where they land as long as there is a path to the beds.

We try do more things at home, like the Friday night movie where we pull out the air mattress and the kids lay on it during the movie. The popcorn does not get pulled out as often since Konnor tends to spill his just filled bowl of it and then we have to get the fought-over vacuum out to clean it up and there are tears shed when a certain little boy does not get to use the vacuum.

While we have tried to shelter the kids from the brunt of the ride, it has had an effect on them. They are all more whiny than they were a year ago. It is difficult for them to understand why we can't just go to a store and buy something for them (not that we would have before, but now, it is harder to do), or why we don't eat out often. It is hard to explain why Daddy can't eat at certain places or eat certain things. They have adjusted fairly well, though, in my opinion. Drake has had some anger issues, at home and at school, Chloe's ears don't work as well as they did, and Konnor is just along for the ride at the moment. He has had some separation issues, but calms down fast. He has become shy the past year, even around family he sees often.

The kids seem to like having both of us home. Drake and Chloe are both doing really well in school. Drake's reading and math scores are high, Chloe can now recognize letters and numbers, write her name, and the numbers 1-10. Konnor's vocabulary has exploded and I know that there is no way that I can list all the words he can say. It is an average of 1 new word a day right now. The current favorite is bird.

Lot is still tired a good portion of the day and is sick of the dialysis every night. He is ready for it to be over and done with. We are still waiting on some friends and family to be tested and for Lot to lose a little more weight. Made much harder now that he is giving himself a testosterone shot every 3 weeks. It has caused him to gain quite a bit of muscle and extremely difficult to lose any additional weight. I feel like we are walking in the desert and that it is a never ending journey. Are we seeing a mirage or is that really the end of the desert? The transplant is so close, but so far away at the same time.

Stay tuned for part 2!