Sunday, January 24, 2016

What is a Vacation?

Despite being stuck indoors all day yesterday and Mira being in an irritable mood, the weekend feels as though it has flown by too quickly. It was nice to have some down time after traveling a lot over the past two weeks, but now the weekend is nearly over. I think we all need a long vacation - I'll get to that later. I'm pretty sure I know what was bothering Mira yesterday - I suspect it was neurological in nature. She woke up twitchy, clammy, and tense, not changing much from that state the entire day. All of those signs usually point to seizure activity, so much so, that I was just bracing for a big TC (or multiple seizures) at some point, but it never happened. Just a lot of lightning jerks and spasms. Unfortunately, it was bitterly cold yesterday, so we didn't want to venture out with her into the frigid temperatures, so we just stayed inside.

Today however, it warmed up considerably and Mira and I just got back from a nice long walk. While she was mildly enthusiastic for the first 20 minutes or so, you could tell she just wasn't herself. I snapped this picture after we were inside and coats were off. Mira was curled up in a ball, having this unimpressed and slightly annoyed look on her face - not sure if she was unhappy for having to come back inside or she still isn't feeling 100%. Her eyes were irritated from rubbing them so much - I was having to stop every 30 seconds or so to bring her arms down to baseline, but it was pointless at times. There are certain points on our usual walking route where she will, without fail, start rubbing her eyes - doesn't matter if it is sunny or not, she relentlessly does it. She is still a little clammy and defensive right now, but not near to the degree that she was yesterday.

Seeing as how I have been on the road (during the work week) more than I have actually been home for the past two weeks, it puts all of the workload of raising three kids on Sarah the entire time I am traveling. If I have said it once, I will say it again - Mira is a lot of work, just by herself. Add in two rambunctious boys into the mix and you have a full schedule. In terms of Mira alone, the best way to describe a typical day, is trying to take care of a 2 1/2 month old baby, that weighs 70 lbs. and eats like a 10 year old. Repeat every day, for 10+ years and see how you function. Transfers alone will physically wear you down, while the emotional strain of trying to solve the never-ending question of what Mira's needs are at any given time, will equally deplete one's mental energy. At times, it is routine and just part of a routine day, just like any family would experience. Other days, it is utterly exhausting and overwhelming.

Sarah and I have this recurring conversation about this time every year and 2016 is turning out to be well, no exception. Yesterday we started talking about vacations and how we really never take 'true family vacations*. Every January, we start looking at calendars, considering possible times, places, and scenarios that might make sense for family vacations, as well as a vacation just for Sarah and I. Over the past 5+ years, Sarah and I have only taken a couple of extended weekends for ourselves - a weekend trip to Chicago back in 2010, and another to Denver a few years ago. We were even able to grab an overnight stay in Omaha one night, while the kids stayed with Auntie Aura. We are always incredibly grateful when all of the stars align perfectly and an opportunity arises, where Sarah and I can take some time just for ourselves. It is asking a lot from family and friends to take care of three kids and we can help but feel guilty, knowing how much work Mira can be.

*(It all depends on what constitutes a family 'vacation' I suppose, so just for the sake of trying to illustrate my point, let's say that when I currently think of a vacation, it typically involves my beautiful wife sitting next to me, my family playing in lots of sand and sun, a light northern breeze, large beach chairs with umbrellas, a few Coronas with limes, and absolutely zero agenda for at least three solid days, maybe more).

Much of our annual planning however, tends to fizzle out for various reasons - the obvious ones are money and logistics. Flying with Mira is a near impossibility, for reasons I explained in an earlier post. That being said, our choices are limited in where we can go with her. Airfare for a family of 5 is outrageous as well, so we tend to focus on where we can go as a family by van, which has its own challenges, depending on the length of the trip. Our true full family vacations (see above) don't really happen, again mainly due to cost and logistics. Frankly, we have never tried to do a 'true' vacation with Mira, knowing that taking her on the road could easily turn into even more work than we typically experience at home, since we would be out of our element trying to care for her somewhere foreign to our very familiar environment. We have tactics and diversions at home - we may not have the same luxury on the road.

This is the dilemma that Sarah and I face, every time we have the 'vacation conversation' this time of year. It isn't fair to the boys, it isn't fair to Mira, it isn't fair to Sarah and I as a couple, which ultimately isn't fair to us as a family. We end up taking separate vacations throughout the year, which I suppose, is better than nothing at all. In the past, Sarah and Eli have gone to Los Angeles for an extended weekend. Sarah and I have taken the boys to San Diego and left Mira with Auntie Aura (way back in 2009 mind you) and so on. So here we are in mid-January, still in strategy mode, again trying to figure out how to potentially do some small vacations this year. Eli and I might go to NYC for a weekend. Sarah and I might see if we can sneak in an evening out somewhere. Sarah had a great analogy yesterday of how we function - our family is running a marathon, there are no water stations, and we are carb-loading for this year's annual run.


Anonymous said...

This makes me so angry at the system over there! I am from Sweden and here you would have the RIGHT to have your child every second-third weekend at a professional carehome for people with disabilities and also the right to longer vacations as well as have a nurse help you in your home all around the clock if the medical issues interferes with your daily life. For free, paid by the state!

I hope the system will change for the better for you guys, you both must be exhausted!

Marc said...

I wish the U.S. was more progressive, but unfortunately, we have a self-serving government who serves only the wealthy and privileged.

Reagan Leigh said...

Reagan has nursing (which she qualifies for because to her gj-tube) and our last three big vacations Bahamas Mexico & Maui we've taken a nurse with us! It definitely helps. But having extra family members around (grandparents) can be just as as helpful. Before nursing we traveled to California and Seattle/Canada with her. It's doable...just not easy. Our last trip we did have to run out and get some Imodium AD because we were having some loose diaper issues did the trick! Nothing on our 8hr plane ride (but we were nervous)! I just can't see myself taking a family vacation and leaving my girl behind. She IS my family! So thanks but no thanks...I'm not dropping her at a carehome while I go on vacation! Not gonna happen. No way. (But there are places like that here in the US...that provide respite.)

Marc said...

That's awesome that you can have a nurse come with you and frankly, we haven't pursued that avenue at all. I think the biggest issue for us is the irritability factor - sometimes nothing will calm her down and when we don't have options left on the road, it gets hectic. We would never consider dropping her at a home - that never even crossed my mind. We will most likely keep playing 'musical vacations' until we can muster together the funds to try a family vacation - thanks for the note.