Creating Magic

The holidays are supposed to be a time of joy and celebration, if we are to follow the messages bombarding us from television commercials, festive songs, and colorful decorations.

But for many people, the holidays bring out a lot of things that are not right in our lives.

It could be the recent loss of a loved one, or the lack of finances to buy gifts that you want to get for people, or struggles with your personal belief systems, conditions such as depression or anxiety, and in my case, chronic illness.

As I’ve been pretty sick and spend a lot of time doing my respiratory Vest treatments, I end up watching a lot of television because the shaking from my vest machine makes it difficult to read or write or do anything else that requires a steady hand or steady eyes.

And I kept thinking that I still hadn’t found a gift for my husband that would give him that “WOW! this is amazing” moment that we see happen in commercials and movies and television and advertising. It’s a pretty seductive desire, the feeling of making someone so happy by simply opening a brightly wrapped box.

But that almost never happens in real life, does it?
And before allowing myself to feel like a failure, I realized how much commercialism has conditioned me to think that in order to be a good wife or sister or aunt or daughter, I have to create these moments.

But the magic doesn’t come in a box. The magic comes from our hearts’ desires to make someone happy. How many times have you made someone’s day just because they called you or texted you? How something as simple as someone opening a door for you, can make you feel that there are good people in this world who care about others with no expectation of getting anything in return?

As I have been sick constantly since August, I had to tame down any of those conditioned expectations that I was going to make someone’s world with a simple gift that I had wrapped in pretty paper and a colored bow. 

I realized that the magic that I can provide is to be able to participate in our family Christmas celebration. There have been some holidays I spent in the hospital. There’ve been some holidays when I was too sick to travel. And more lately, there are holidays when I have to save up all my energy for a week to just go “out” for two hours.

But in those two hours, I soak up every smile, every laugh, every moment that I can. Because even if I can’t last more than a few hours, the magic is in connecting with those we love. 

So whatever you have to celebrate during this time of year, remember that the biggest gift that you could give someone is a piece of your heart.


These are the people who keep me going. These are the reasons I continue to fight. And these are the pieces of my heart.

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First, Waiting to get Better, Now Waiting for Fun!

I just wanted to write a quick update because things have been a little busy around here and you know how that gets..

After my belly issues at the beginning of March, I’ve been dealing with infection on and off and try to stay off antibiotics as long as I could. That was until about two weeks ago.

I had my regular CF clinic visit, ended my PFT tests, and my numbers were pretty good. They were pretty much exactly the same as they were last time… Not improved all the way back from everything I lost after my experiment of taking the new drug for CF, but it hadn’t gone down.

So when I came home a couple of hours later and I had a fever of 100.1, thought that said my streak is over.For seven weeks, I had experienced several episodes where my infections are flaring up and I had several days of strong symptoms, but you’re doing extra vest treatments and lots of rest and vitamins, and lots of fluids, I actually made it through without loading antibiotics. My immune system *sometimes* does work!

 

This machine measures how much air I can blow out in 1 second…and a few other variables…that help define my current acute and chronic lung disease.

 

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Hitting a High C

December 31, 2015

It’s the last day of this year, and this is my official New Year’s Eve post. It’s also the eve before I begin month 3 of taking Orkambi, the new Cystic Fibrosis drug.

I originally planned to chronicle the major ups and downs of 2015. There were plenty of both to share, but I have realized that so much of life is how we perceive things. I realized that although I had many challenges this year, I also celebrated many victories and moments of sheer joy and love.

So my New Year’s post will be about 10 of the most amazing moments of 2015, in no particular order…
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One Perfect Day

After my last hospitalization – which ended only 2 months ago – I had so many plans for this summer. So, so many. We had planned to attend a Gala, a friend’s wedding, and have adventures at the beach.. I envisioned myself in the pool every day for relaxation and exercise, and enjoying my health.

But Cystic Fibrosis had different plans.

After getting out of the hospital, I felt what I thought was the usual “recovery” period after 2 weeks of IV antibiotics to fight lung infections. I thought, I”ll start feeling better. And I did. For a few weeks, I enjoyed going out with my husband to the movies, out to dinner, and a just running errands. The outings didn’t last too long – about 2-3 hours each – but it was more than I had been able to spend doing anything much.

However, I just wasn’t feeling as strong as I had hoped. We missed one event after another. I kept thinking, we still have the summer ahead. Then the weeks began to pile up behind us.

But then, God gave us an amazing gift.

Normally, my sisters, my mom, and I rotate hosting holidays. Over the past several years, I’ve either been sick or in the hospital and couldn’t pull off the amount of effort required to host a big meal. But a picnic seemed so much more doable – Ken would do the grilling, we had games and the swimming pool to entertain the kids, and everyone would bring something to contribute.

Nature tried to throw our plans askew.

First, the week before the weekend, we had a bad thunderstorm which blew over our grill. It was a total loss, so Ken had to get a new one. Thankfully, some manly help was available in the form of two of our nephews who seemed more than happy to help!!

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Ken and the boys unloading the new grill.

Then, the weather forecast changed from  sunny and warm to rainy and chilly. The day before, we decided to postpone from Saturday to Sunday. Of course, it barely rained on Saturday, but the temperatures never rose about the low 70s – hardly a pool day.

Then God smiled upon us.

Sunday morning, we woke up to blue skies and summer temperatures. I was excited to finally set up.

I had ordered groceries online – yay for Peapod! – which saved me time and energy, so the day of the party, all I had to do was prepare the corn on the cob and set up the food table. Ken took care of the heavy work – getting the lawn furniture up from the basement and putting out the lawn games.

Groceries. Setting up. Corn on the cob. So excited!

Groceries. Setting up. Corn on the cob. So excited!

The day turned out to be so much fun.

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Me and “the girls”.

I was so excited that the kids enjoyed themselves!!

Boys will be boys!

Boys will be boys!

The boys played lawn games, the girls chatted around the picnic table, and the kids enjoyed the pool.

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Clear water, blue skies, and hot sun make for a perfect pool day!

I was a proud auntie, sister, daughter and wife. It made me so happy to see everyone eat and play and enjoy themselves.

A great day!

A great day!

Even though I haven’t been able to do most of the things I had hoped to do this summer so far, this day was an accomplishment and a blessing.

The end of a perfect day. This one is frame-worthy!!

The end of a perfect day. This one is frame-worthy!!

I felt incredibly lucky to serve and entertain my family, and to have these memories carry me through the rough days. Even if I do nothing else exciting this summer, I will still have this day in my heart!!

Imagine…Thanksgiving

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Ask yourself = What does it takes to make you happy?

Now take a step back, and think about what things make your life a lot easier.

Then take one more step backwards, and consider what you need in life to survive.

Now erase all that in your mind, and begin again. With each statement, I want you to visualize what it would look like to you.

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A Challenge – Opening Your Heart

I was surfing on Facebook and found myself thinking, why is so-and-so friends with me? What is it that they like or find appealing? I then turned that around, and thought, why do I like the people I call my friends?

So I set a goal to let those in my life know why I choose to have them in my life. While some reasons may seem obvious – blood relation, years of attending the same school or working together – it’s more about the personal connections that draw and keep us close to other people. In other words, I might share the same genes as you, but it’s your bright personality and sense of humor that brings our hearts together. Continue reading