Yes... you read it right, I don't think I know what spontaneity is... Okay, okay, so I know what it is - but I definitely have forgotten what it feels like, until tonight.
In high school most things we did were pretty spontaneous, though it was never anything huge. Just a random night at the movies, hanging out in front of the school, or playing towel tag. Rarely was anything planned. When I moved to Utah for college I started out being pretty spontaneous - I would find out about an event through ASUU or FC or the HC just a couple hours before it started, I would find a few friends and go - sometimes even just going by myself. But that really didn't last long. I started getting sick when big events came around (I always seemed to have a test or something... stress) and I became less spontaneous as my freshman year went on. I put school first, how it should have been.
I then moved out of the dorms and Spence and I became a lot more serious - getting engaged and then married. Because Spencer was always sick with his CF we rarely were able to be spontaneous. If we tried, something always seemed to come in our way... Usually we couldn't because there was not enough oxygen tanks to get us by but other things came in the way too - sudden need of treatments, had to stick around for a phone call from the doctors office, had to stay home because of a refrigerated medication delivery, a sudden drop of oxygen saturations; not enough energy to shower.... the list really can go on.
There were many times where we talked about wanting to plan a trip somewhere or do something fun. We talked and dreamed about doing so many things together. We'd see many events that were in the next month or two and desperately wanted to go, but of course you had to purchase tickets in advance or RSVP in advance to many of the things we wanted to do. We couldn't just be spontaneous! We couldn't see something that looked fun and then immediately get online and book the tickets without spending about a week in thought to really see if it would work out. Not to mention many phone calls with insurance and his doctors to make sure that everything would be okay. Would he have a clinic visit that day? Would he be feeling horrible? Would I have to go by myself? What if we're too far away from the doctors and he gets really sick? Would he be in the hospital? When is the next time he will be in the hospital, and will he be out in time? He does his best 1-2 weeks after he gets out of the hospital, can we plan this around that? Will his meds need to be kept cold that month? Do we need to order oxygen tanks in advance and, oh wait, is the oxygen guy even going to be around that week? When will we have to order the extra meds to take with us? Do we need portable oxygen? How will he do his treatments on the go? Will he even do his treatments? How will we transport all his medical equipment? Am I okay with doing manual CPT at least 4 times a day while we're gone? Will this make him sick? Would there be a huge infection risk? Is it worth it?
I'm not even kidding you every single thought and more went through our minds when it came to doing just about anything. We couldn't really even plan ahead. We could do simple day trips that were close to home, but as far as traveling much over 2 hours it was out of the question without serious thought, consideration, planning, and tons of stressing. He was just so sick that we had to take EVERYTHING into account. When we didn't, disaster tended to strike.
So with that being said, we didn't plan ahead, and we couldn't do things on a whim if it was too far away from home. We learned to do things day by day and not get our hopes up about things that we heard on the radio or saw on TV. Until his health improved, we were very limited in living our lives together, really. It was very frustrating, and really we did what we could.
But tonight - for the first time in a VERY long time.... I was able to plan ahead. I was able to very spontaneously say that I will go to a concert with my best friends in Utah in September. I am able to actually preorder tickets online for this concert. I can't really even believe it. And I should be super happy and excited about this right? Well I am excited... but I'm also kind of sad at the same time, and scared.
I'm not used to this kind of freedom.... The ability to do these things without having to think about another person. Doing them for.... well for ME. That's a weird thought to me and really unfamiliar. And right now I'm wishing that I had someone else to worry about. =/
(((I will never, EVER say that Spencer held me back. By spending my time with him at our house and for 2 weeks nearly every month in the hospital was MY choice. Of course I could have done things without him, (he actually encouraged me to ALL of the time!) but I wanted to spend my time WITH him, at home or not. And I wouldn't change that choice for anything. I won't ever regret it.
But I guess I just didn't realize the freedom that I was 'missing'. And I feel horrible actually saying that. =( This is not at ALL to say that I wasn't happy, by the way. )))
I can now do all the things that I couldn't have done with Spence. go to concerts, take a weekend trip on a whim, go to conferences, spend time outdoors, hike, etc etc. And while I'm excited for these opportunities, and I know that he is very excited for me and wants me to live my life to the fullest, I'm just sad. horribly, horribly sad.. Because I want to be able to share these things with him so desperately. It's not fair that I can do them and he couldn't, and now can't.
It's this new part of my life that I am just now realizing that I have in front of me and I'm terrified to live it.
My thoughts have always been that the next step in my life would be moving back to Utah, getting a job and working my tail end off, and returning to school. I didn't think about all these other things I could do. I thought about going to a movie with friends, having someone to hang out with on weekends maybe playing games. But going out and doing things because I want to? It's something that hasn't crossed my mind until now.
I'm having a really hard time capturing exactly how I am feeling about this. This feeling is something entirely new to me and I hate it. I can't figure it out. I don't know how to sort through these thoughts and emotions.
I just can't believe the whole situation. I'm ordering tickets online tomorrow... I'm doing this because I want to and I know it will be a very fun time. Of course right now I want to back out and not do it - but it's not for a few more months and by then hopefully I will be partially adjusted to this new spontaneity that I'm now able to have....
And just an ending thought.... You know we always wanted to go to a concert together - but we couldn't. His anxiety was always high around a lot of people and loud noise. We'd have to juggle about 4 oxygen tanks to last us through the night. He wouldn't be able to stand up for long periods of time. He just wouldn't have enjoyed himself. But now I can, I'm free to do this. And I know that he would want me to - I know that he's probably proud of me for taking this step (realizing what I was doing at the time or not...) It just sucks that I have to go to it "alone". (Yes I know I have my friends, but you know what I mean.. right?)
I completely understand. I often think about all of the things that my dad is "missing" too. Or things he couldn't do, or wasn't able to do, when he was here. He could barely walk the last couple of months and missed so much and I always felt bad that we would do this stuff as a family without him and now he will never get to do these things. But then I realize, I'm mostly just sad for me, that I don't have him around for those things. In reality, I think my dad and Spence are in the best possible place for them, much to our heartbreak. And I just have to believe that even though neither are physically with us anymore, they are always there, they can "be" at every game, or concert, or event because they are always with us and watching us and guiding us. Often it doesn't help the pain, but, maybe gives me (and hopefully you?) a little hope. Hang in there <3 -- Courtney M
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