Make the Most

As a general inspirational post, I’m sure you’ve heard it before. It’s important to make the most of every opportunity. There are a TON of quotes and phrases to illustrate it:

Time waits for no man.

Make the most of every opportunity in these evil days. (Esphesians 5:16)

“Each day comes bearing its own gifts. Untie the ribbons.”
Ruth Ann Schabacker

“You may delay, but time will not.”
–Benjamin Franklin

“Why not seize the pleasure at once, how often is happiness destroyed by preparation, foolish preparations.”
–Jane Austen

“We are always getting ready to live but never living.”
–Ralph Waldo Emerson

And while these statements are true for everyone, I think when you have a chronically ill child (like I do, with two kids suffering from Juvenile Arthritis) you have to work even harder to make the most out of every situation, and not let opportunities pass you by. Its really easy to say “now is not the best time,” or to wait until things are “better” to attempt whatever you were thinking about. But unfortunately, this is the “new normal” with chronic illness, there may never be that perfect time again. If we accept and embrace these less-than-perfect times to go on living, doing and experiencing, we sometimes find that they are even better than we could have ever hoped.

Today, my kids are still asleep, and I am writing this post from a hotel room in central Kansas.

Why on earth, you ask?

Because this is my attempt to make the most of our situation. Things have not been great in our camp lately. As I mentioned once, I am going through a very ugly divorce, and both my kids have been flaring, although we seem to be getting things under control in that area (whew.) It has been very tempting to pull the covers over my head and try to ignore everything that is going on right now (and since it is SO cold, that makes it even more appealing) but what kind of example is that to my kids? EVERY single day is a gift, and I plan to accept it.

It’s all about perspective. My soon to be ex husband promised my boys a trip to the Fiesta Bowl in Arizona this New Years. With one son’s medical care becoming more complicated after the promise was made, I needed to be the one take them there, or they needed not to go. I wasn’t going to make them miss an opportunity, especially to have a positive experience with their dad, so I made arrangements to get them there.

But then we had a hiccup. Between the fatigue from our last hospital trip, immunosuppression and a virus that reared its ugly head, flying was not recommended. Both kids were eager to switch to a road trip, since they could rest, relax and have a greater adventure (me? not so much.) I groaned at the thought of driving over 28 hours each way in the dead of winter, but promises (from both parents) are promises. I also know that next year may not be as good as this one. We may not have the health or finances to make this happen, so I resolved not to let this opportunity for the boys pass them by.

And that is where the magic started. Realistically looking at my limits driving, I planned a stop that was slightly off our route, but allowed us to visit with friends along the way. The boys were thrilled, and had no idea that we parents had cooked up this surprise for them. The visit was short, (just a long dinner) but the looks on their faces, and the precious time we spent was worth it. We talked about another boy our son’s age who we know, who recently was diagnosed with terminal brain cancer. Even though our boys are young, thinking of their mutual friend really drove the point home for us, that making the most of these opportunities to see loved ones, friends and family whenever we can is important. We can’t always put these things off for another tomorrow, because tomorrow is not guaranteed. It was well worth the 50 miles off route, and an overnight stay 3-4 hours earlier in our drive.

Today I will go another 12 hours before we stop, and in the morning we will cross another restaurant off Grant’s 101 chowdown countdown (travel channel) tally from his bucket list (the one he started 4 years ago.) I did plan the stop around that too. If we needed to stay a night somewhere, best to make the most and seize another opportunity. When I let him know that we would be managing that stop as well, it was like he had unwrapped another Christmas gift. All because of a little extra planning and a snafu in our original travel plans.

While in Arizona for the short three day trip, they will go to the bowl game with their dad, a hockey game with me (thank you stub hub for cheap0 tickets, that get us one step closer to reaching both kids’ goal of attending a game in every NFL/NHL/NBA/MLB venue) while we will get a chance to visit and relax with two of my friends who live locally and another one of the boys’ friends.

What started out as a hassle- a reason for me to scrap the entire trip: the inability to fly in and out for just two days all the way across the country… has turned into an amazing opportunity for all of us. I will be beat, but my kids are getting even more rest than they do at home, sleeping away days in the car, and nights in the hotel, but their trip is now an adventure, crossing things off the bucket lists and peppered with visits to friends we don’t see often enough.

It took effort and an attitude adjustment, but we are making the most of things. We are MAKING opportunities out of other options that were taken from us because of JA… and you know what?

I think in the grand scheme of things, this turned out better than our “ideal” plan. Yes, it took work. Yes, it took creativity and more planning. (and yes, it was still a “pain”) But I think this is going to end up being one of those epic memories my kids carry with them forever.

That is why I am sitting in a hotel room in Kansas, and not in my warm bed with the covers pulled over my head. Because time is too precious, and I have learned no opportunity is perfect. You have to make the most of it to make it what you want…despite everything else life is handing you, and in spite of whatever cruddy circumstances that you have to deal with.

I would love to hear from you if you have had an experience like this- making the most out of the worst, how a bad situation turned out better than you hoped, or how your attitude and creativity turned a bad situation good, or how YOU seized an unexpected opportunity.

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  1. Just wanted to say that you’re a wonderful mom with a fantastic outlook. I’m impressed with how you consistently put your boys’ needs first, and how you have the ability to look for the positive in everything. This is the perfect post for me to read on New Year’s Eve- a good reminder to try and look on the bright side more often in the New Year. Wishing you and your boys a very happy 2014!

    • Thanks Holly- I really do try! It isn’t always easy, but MAKING myself be positive always works out better for all of us in the long run. Happy New Year to your family as well!

  2. I think your positive attitude is beautiful and powerful. You are an inspiration!
    Elizabeth recently posted…What Does Homeschooling Look Like?My Profile

    • Thank you Elizabeth! Sometimes I feel kind of funny putting myself out there, with the REAL stuff our family is going through (rather than the general life with JA stuff) but occasionally I get the inspiration to share because reading similar “trials” posted by someone else has helped me so much in the past. Sometimes it just feels right to return the favor, and give a little bit of that private me that could help someone else. Thanks for affirming me!

  3. You have such a wonderful outlook on life. And you are a FANTASTIC momma. In case you don’t hear that enough. What you are doing for your kids is something they will NEVER forget and an experience they will appreciate more than you ever know.

    GOOD ON YOU for the total attitude adjustment and for creating this epic adventure for your family. I’m sure that you have a lot going on right now and I only hope that you can put yourself first every now and then, too.

    XOXO and stopping in today from the Positively Random Blog Boost today on FB.
    Charlotte recently posted…my non-resolutions listMy Profile

    • I’m a firm believer in life is what you make of it. I do think that having this crappy disease has even made us more aware of that fact, and taught us to really seize the good moments whenever we can because there are no guarantees that tomorrow will be better. In some ways, our lives have been fuller because of it.

      Thanks for the affirmation. I don’t get it very often outside close friends and family, and especially with this divorce, I have been under attack, so it is really nice to hear. Thank you for taking the time to stop by and comment.

  4. Your boys are truly blessed that you are choosing to make the most of this time. I know that driving long distances is not fun, but the memory of the fun of this trip will outlast the “un-fun-ness.”
    TaMara recently posted…2013 Recap – Most Viewed PostsMy Profile

    • No, I agree, all that driving isn’t very fun for me, but on the bright side, my kids sleep ALOT on those drives (and still sleep at night because they are teenagers) and when they get all that extra sleep I can see a (good) difference in their JA symptoms. At home they can’t really function and sleep 16-18 hours in a day! In the meantime we laughed about “attractions” on the route like the world’s largest hand dug well in Kansas, Dorothy’s “real” house (from the Wizard of Oz) in Liberal KS, and the gigantic western gift shops/gas stations (LIVE RATTLERS!!!) on the interstate. I agree with you completely- these memories will far outweigh the “yuck” factor of sitting in the car for so long, and no one can take those away from us!

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