Posts Tagged ‘life’
My husband calls me after a late night softball game, which he usually does to let me know he’s on his way home, but this time he informs me that someone pulled a hit and run on his car while he was in the middle of a game. I was watching the documentary Babies and actually this news was very unmoving. Ten years ago, this may have been a big deal, but today I can just shrug my shoulders and carry on.
I think that in particular the past three years have been the most critical. In the past three years, my life experience has been broadened beyond my greatest expectations. Some major life altering experiences have taken place: I had a tumor removed from my abdomen, I became a mother of three, Julia was diagnosed with cystic fibrosis, my husband and I watched over a half a million dollars in real estate investments evaporate before our very eyes, we gave up our dream house in a short sale, we moved into one of our rental homes or shack may be a more accurate term when compared to our previous residence, I returned to school, Julia had her first clean-out, etc. The list can go on and on, but these are the major highlights.
So, when news of a dent in one of our household vehicles comes my way it’s easy to shrug my shoulders and continue watching my show. It’s would probably take a hurricane to move me at any rate. It’s funny how life changes you. Things that would have once been a major deal pale in comparison to what we’ve been through in the past three years. Life is good, we have our family, we have our health, we have friends, we have the basic necessities…all we could ever ask for…and now we have a dent in my husbands precious car!
Actually, this is probably a bigger deal for Joe because he has to deal with getting it fixed. The positive thing is that after much searching, a note was left under the windshield wiper…there are decent people in this world after all. Don’t sweat the small stuff, right?
Oh, and after watching Babies, I really need to hold someone’s baby. Hurry up already Elisa!
Big dent
It's not that bad right? Except the trunk no longer opens...
Forgive me as think through my fingers for a spell…
It has been a year since our last move, and the plan is for that move to really be our last move. It has been interesting as our family has come into contact with new people and formed new friendships, particularly when conversations come up about Julia. I have noticed that in several conversations about Julia’s health, questions like, “…and then she’ll be done right?” or “…and that’s all she needs to do, right?” Or if I am questioned about her enzymes, questions such as, “…and that’s all she needs to take right?”
I have decided that these questions are seemingly more of a search for that “Happily Ever After” ending that most of us are seeking, often without realizing it. No one wants to hear that a disease goes much farther than swallowing a couple of pills right before you eat a meal or that just because you have a clean-out doesn’t mean that you are done with your treatments. Cystic fibrosis isn’t a disease that’s going to provide that “Happily Ever After” ending we’re all searching for. It’s not like cancer where you can beat it…go into remission…and be cancer free…and be done with chemotherapy. With cancer there seems to be two outcomes…you beat it or you don’t. With CF there are also two outcomes you live with it, always fighting it, never really winning the fight or you loose the fight. The hard thing for most of us to wrap our minds around is the part where you never really win.
The story we all want to hear is that the brave knight goes into battle against a fierce dragon and in the end slays the beast and wins the heart of his fair maiden. The battle ending in victory…the battle ending. There is no end to Julia’s fight. She will always be in battle against a very fierce dragon…every minute…every second. She will not have the traditional “Happily Ever After” victory that we all hope. Life sometimes isn’t like the story books we read to our children and that sometimes is very difficult to accept.
We do have many victories, even if the battle is never really finished. We take one day at a time…sometimes one treatment at a time if needed. Our victory each day is to go to bed knowing that we’ve completed all of her prescribed treatments. My victory, as a mother, will be when Julia can take up her battle independently, for it is my hope that she will do so when it’s her time. Our victory was completing Julia’s first clean-out…a huge victory for the Mills’ family and for Julia.
CF is much like life…it isn’t over until you earn your angel’s wings and return home. Like life, we battle daily, we struggle, and some days are much better than others. CF is the same. Like life, we never give up, ever. We always have hope for things better. We don’t have your “Happily Ever After” ending at our house, but the story of Julia’s life, I will guarantee you to be one of the most beautiful ever written.
Austin, Olivia, & Julia waiting to pick pumpkins!
Wow, so these past two days have been extremely challenging for me, probably the most challenging in quite a long time. So, Tuesday was Joey’s birthday and I wanted to do something special for him, so I did. We planned a small party at Classic Fun Center and the kids were really looking forward to it. I hit the gym at 5:45 that morning, ran the kids to school, then came home and started Julia’s treatment. Her normally hour long treatment took even longer because she had to use the bathroom about five times during the whole thing. I will be so glad when we are done with this new oral antibiotic. Hopefully her bathroom habits return to normal after we’re done. I showered after treatment, then ran to pick up Olivia from preschool. We hit Costco and picked up party supplies and ate lunch, then ran home for Julia’s nap. While Julia napped, I finished the cake and made sandwiches, paid bills and got deposits ready. When Julia woke up from her nap, we got her evening treatment done early, because I knew if I didn’t get it finished then, it would be 9:00 before we’d be home from Classic. So, we got it done, I sanitized her equipment, and then packed up the car and we headed to Classic. Joey got Austin from school so I could get treatment done, which was huge for me. Anyway, we partied and Joey didn’t really enjoy it because he had had a rough day at work. We got home at 9:00 put the kids to bed and the rest is history.
The next day, Wednesday, went pretty much the same as Tuesday. It was our 14th wedding anniversary, and we wanted to go out to dinner and we did. I won’t bore you with all of the details of this day, but let’s just say that I didn’t get Julia’s treatment done before we went out, so I had to do it after we got home from our date. Olivia and Austin went to bed at 9:00 last night and Julia went to bed a little after 10:00. Let’s just say, it was a late night for me and I didn’t make it to the gym this morning…too tired.
I honestly enjoy the days where there aren’t any special occasions a bit better because they’re less stressful. With CF, you can’t cut things out if you have a birthday party or an anniversary dinner. The burden is always there, hovering over you, demanding your efforts, your time. So this is life and that’s OK.
I am declaring this a day of recovery for me. Tomorrow I’ll be off to the gym at 5:45 and the race will continue. The kids have a four day weekend, and I actually look forward to those days when I get a break from running them to and from school.
I want to add that I am so blessed to have such a wonderful husband. This past year, our roles have become quite defined. He works so hard for our family…putting in long hours so we can have our needs met…then he comes home and invests his evenings with his children…then most times heads back into the office after the kids are in bed to finish up. It has been a fantastic 14 years and there are many more good years ahead. Happy anniversary Joey!