More Butterflies from Princess.....

Okay, so I just felt like I needed to do an addendum to my last blog “Always Look for Your Butterflies.” If you haven’t read my last blog, please take just a moment to do so…it will help you understand the significance of what I’m going to write about now.  This story isn’t really meant to be preachy, but I am definitely a very spiritual person. I just couldn’t pass up the opportunity to share this story of His presence in my life, and how we all have to be open to that presence…and sometimes...you don’t have to look far at all.

On Tuesday of this week, I went to Princess’ visitation. I spent some time visiting with her mom, and then some time at her casket…and she actually did look like a princess….sparkly pink lip gloss and all.  I then stopped to visit with her grandmother. We visited for a very long time. We shared stories that made us laugh and cry, and she told me stories of Princess’ last few days. We had done a lot of pretty significant sharing, so I decided to share with her the story of my butterfly…the swallowtail butterfly that reminded me that child life is what I’m supposed to be doing right now.  As I finished my story she said, “Did you say it was a swallowtail butterfly?” I replied, “Yes” and then she asked, “Did you see the picture of Princess when you signed the guest book? Did you see what she was holding?” (This picture was taken the month before at her Uncle’s wedding; she was the flower girl. Princess was such a beauty and extremely photogenic. She was dressed in a beautiful off-white satin dress, with flowers in her hair.) I said that I did see the picture, but didn’t pay attention to what she was holding. “Debbie, she was holding a butterfly…a swallowtail butterfly.”

Tears immediately began to sting my eyes...this was the same kind of butterfly that God had sent to me as a sign the day before Princess died. “But wait, Debbie, it gets better” said her grandmother. She proceeded to tell me that four days before Princess died, she was at her grandmother’s house and they were out in her backyard. There was a butterfly flitting about and Princess said, “I want to hold the butterfly, Grandma!! Catch it for me, Grandma, catch it!!” She said that the butterfly had landed on one of the bushes so she went over to see if she could catch it. She said the butterfly sat perfectly still with its wings pressed together, seemingly waiting to be picked up. She picked up the butterfly and took it to Princess who held out her finger. Grandma put the butterfly on Princess’ finger.  She held it for a short time and admired its beauty, all the while talking about just how beautiful it was. She then raised her finger to release the butterfly.

It was, naturally, a swallowtail butterfly.  

Her grandma told me that because Princess loved butterflies so much, they decided to have a butterfly etched on her headstone. Two days after she died, Grandma decided to go out into the yard and see if she could find a butterfly to take a picture of…they wanted a picture of one of her real butterflies for her headstone. Grandma went out into the yard to look for a butterfly. She found one sitting right on that same bush. She thought there was no way that butterfly would sit there while she got close enough to photograph it. But that butterfly did sit there while she went to get her camera. When she approached, its wings were pressed together, but as she inched closer and zoomed, the butterfly opened its glorious wings and just waited. Grandma did get that picture…she got the most beautiful picture of that butterfly, and I think by now, you know exactly what kind of butterfly it was….

Princess’ grandma and I both cried…all over again.

You always have to be looking for your butterflies….you just never know where they will be, or when they will appear….but it’s usually just when you need them.

Look for Your Butterflies.....

Wow. What a crappy week. Sometimes we just all have 'em, but jeez...this one was really rough. I'll take out of the equation the fact that my son is gone for 10 days with his dad on vacation which has certainly been an experience for me because I've never been away from him for that long. However, my crappy week was really based on the death of two of my patients, one who was 14 and one who was only four. Both equally tragic in their own right, but putting them in the same week  just seemed a bit excessive to me, Lord...with all due respect.  And then there was the 6 year old who is so horribly ill that when I went to visit, he just didn't even look human. What the heck is that all about?

If you work in health care, you know that this is just the way it goes sometimes...comes with the territory. However, it doesn't mean you ever get used to it.  I mean, can you ever really get used to it? I don't think so....you just do the best you can and try to deal with it as it comes; rely on your coworkers for support, pray more, give your children more hugs.

Well...this week was exceptionally rough. I've always looked forward to when my little four year old friend would come in for chemo, blood, platelets, dressing changes...we'll call her "Princess." Princess would come in a couple times a week, unless it was a chemo week and then it would be four days in a row. We'd formed a pretty special little bond. The crazy thing about Princess was, she didn't know that if you are dying, you are supposed look and act sick. The fact that she was unaware of how she was supposed to look, actually just made it harder for everyone...family and staff included. We just couldn't understand how she could be so sick, and act so...not sick.

I was already feeling extremely saddened over the death of our 14 year old who died early Monday morning when Princess came in that same morning for platelets....and she was in rare form....so...much...fun! Although I was sad inside, she brought smiles to my face and sunshine to my heart like any other day.  She was really, really, REALLY good at that. She had just the kind of beauty (inside and out) that made everything around her magical. After she left that day, her case manager told me that she had an exorbitant amount of blasts (leukemia cells) in her blood...which essentially equated to...she's definitely going to start feeling sick pretty soon.

The next morning she came in with severe leg pain... came in writhing in pain. This wasn't an easy thing for any of us to see our little Princess in so much pain, especially when she seemed just fine less than 24 hours earlier. Unfortunately this whole scenario played out again, the very next day. We all have those kids who just melt our hearts...and to say that Princess melted my heart, is probably the understatement of the year. When she left that very last day (Wednesday), I knew I'd never see her again. At this point, I just needed to get out and go for a walk...right away.  I called my friend, and walking buddy (I'll call her Kay), to see if she could go...right then and there....for a walk. Kay is an inpatient child life specialist, who had also been having a really crappy time with lots of tragedy in her teen population. We used our walks, not only as a way to get exercise, but we often tried to tackle work issues or occasionally tried to solve world peace. Thankfully, she was able to go with me right then, which was a blessing. We both just needed to go outside of the hospital walls and walk off our sadness/anger/frustration.

So our walk consisted of exactly what it needed to consist of...yelling, crying and questioning. "Why, God, does this have to be so hard??!?!!" "How is this fair?!!" We tried to console each other with words that just really can't make any sense about why kids have to die, because there just aren't any good reasons or words for that. So we walked, we cried, we yelled, we questioned, and then we cried some more. We talked about "signs"...and how we've each asked God for signs about different things in our lives. And then we talked about how we've struggled to figure out if what we were seeing really was a sign...or just our overactive imaginations. I was telling her that it always seems that just when I start to question if this is what I'm supposed to be doing with my life, inevitably, I get a call from a patient...just wanting to say "Hi", or to let me know that they're in the building for a checkup and can I come visit. I told Kay, that those always seem to be my signs from God. When I question, He delivers an answer to me in the form of a patient whose life I've touched...or probably more accurately, who has touched MY life. And honestly, He's usually very prompt. :-)

At this point in our conversation I said, "I don't know. Maybe I'm supposed to do something bigger? Maybe it's time for me to move on? Maybe child life isn't what I'm supposed to be doing anymore, it's just too hard. Is this what I'm supposed to be doing?!" No sooner had those words crossed my lips, the most beautiful swallowtail butterfly crossed our paths. Not only did it cross our path, it dang near hit me in the face! Literally....I felt it fly past my nose. We both stopped dead in our tracks and looked at each other in awe. Kay said, "Wow." I said, "I guess that's our answer." I can't say that before that day, I'd ever seen a swallowtail butterfly in Nebraska? I see lots of those common yellow and white ones and lots of monarchs, but swallowtail? Nope. Sadly, Princess died that very next morning.

We've talked about this since it happened. What were the odds that Kay could go for a walk with me at that exact time, that we would take that exact path, that the butterfly would fly by me at that exact moment in time? Coincidence? I don't think so.

Always be looking for your butterflies.

A Hundred Years from Now......

 ....it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove...but the world may be different because I was important in the life of a child” by Forest Witcraft.

This is one of my all time favorite quotes....and one that helps bring focus to my life in uncertain times. I'm sure you've all experienced the same problem…the “Wah wah” moments?  YOU know the ones...it just always seems to stockpile..."wah!" on top of "wah!" on top of "wah!"

I get them from time to time and get on my pity pot; "My house is too small....my house is a mess....I wish I had more money....why do I live so far from my family.....why do I live so close to my family....why doesn't the world revolve around me," etc. One thing that working in health care does...it humbles you. It helps you keep your life in perspective. Inevitably when I'm having one of those days where I just can't understand some of the choices I've made and I’m having a hard time trying to kick myself in the butt, I go to work and get a dose of other peoples' realities.  They have loved ones fighting for their very lives. Perhaps a child newly diagnosed with a life threatening/altering condition. Or there’s a parent who has been in a tragic accident, or one who is losing their battle with cancer and facing the reality that they will have to say their goodbyes all too soon. That’s when I always end up telling mySELF to "shut up and quit whining!"

What brings light to my heart?  Children.  And not just my own son (who is 13)....although he is by far the most important thing in my life. He and I have always had a uniquely wonderful bond. I think it’s partly from being a single mom; we always have each other's back. He’s a lot like me and definitely has inherited some of my better traits....and…a few of my not-so-great ones! Sometimes when I’m on my pity pot, I whine to myself (or if they’re lucky, I whine to others) because I am the sole person responsible for getting my son everywhere and doing everything for him. My family lives 2 hours away, and although his father is local, I'm not able to rely on that help (which would be a totally different blog that I choose not to write about). Then there’s always the “I wish had more money....I want to be able to provide him with this or that, or be able to go here or there, or not have to shop at discount stores (one of my life goals is to buy a real box of cereal), or worry about how many years it will take until I can get a bill paid off.”

Not long ago, one of my friends (from a dual income family) was flabbergasted to learn that I'd never had a manicure or a pedicure. Well....there are choices you have to make in life and we all have to make 'em every day. I choose to go without some things in my life (as we all do), so that I can afford to do other things that include my son, or so that I can buy him the new $300 baseball bat that is required...and one day, that real box of cereal.  

Ahhhh.....do you hear it? These, my friends, are the "Wah wahs!!" Beware of the "Wah wahs". They can really take a toll…if you let them.  But at the end of the day, none of it really matters. What matters most to me is living a good life, taking care of myself, setting a good example, loving God, and raising a good son. I want to raise a son who loves the Lord, who is compassionate toward others, is a good friend, husband and father. A son who knows right from wrong, makes good moral choices, is strong enough to stand up for what is right, and to stand up for those who aren't able to speak up for themselves.

It’s equally important that we are able to influence positively, those children around us. I really have the greatest job in the world! I have the ability to affect children’s lives…every single day, and that is a blessing. To look into the eyes of a child or teen who is potentially facing a new diagnosis of cancer, is a powerful thing….truly powerful indeed. There’s the “deer in the headlights” look, the tears, the sadness, the anger, the fear…it’s all there. And it’s there in the eyes of the parents too.

I get the opportunity to help prepare them for what the next few hours and days are going to be like; prepare them for what lies ahead; arm them with the swords for battle. Knowledge is power and with power, comes strength and courage. Telling kids what will happen, how it will feel, what their job is going to be and helping give them the tools to perhaps have a more positive experience, is a privilege. I also think it’s important to sprinkle in a little well-timed humor (hmmm…a future blog topic?)…and a few smiles. For those who know me, I’m a bit of a silly heart...although if you ask the patients and families, they’ll just say I’m plain nuts. And I take that as a compliment.  :-)

Kids and families just don’t know how to react to this word, “cancer.”  I mean, really…what the heck… “I have cancer?” As you can imagine, this is extremely intense. It is sometimes a very delicate art; being able to balance caring, compassion and empathy, without going overboard on emotions. They have to hear what we are telling them, so sometimes it just takes a couple of repeats. But by inserting a little humor here and there, I’m able to relay that life is going to go on and they are going to be a part of it.  I want them to know that  it’s still okay to laugh (in fact it’s a great stress reliever), that our team is going to be by their side helping them navigate these unfamiliar waters, and we’re going to do it with strength, determination, humor and love. 

 Heck, sometimes I just get to play Skipbo with a patient, or build a rocket ship, or read a story…or just make them smile. Play is just as powerful as any other tool.  Really?  Play? Yes, play. In fact it was Plato who said, “You can learn more about a person in an hour of play than in a year of conversation.”  How true this is. Kids look forward to coming for their outpatient treatment and trying to beat me in a game of cards (but they rarely do!), or doing a craft, or blowing bubbles while they have their dressing changed. Wow…what an amazing job I have!  I get to touch kids’ lives every day...and I get to touch their hearts as well.  And….they touch mine.  

Do I still wish I had a bigger house? Yes. Do I still wish that it wasn’t messy? Yes. Do I still wish that I had someone to share life’s up and downs with? Yes. Do I wish I had more money? Yes. Am I thankful for all the wonderful gifts God has bestowed upon me? Yes! ABSOLUTELY!!

So when I get the “Wah wahs”, I recall these 44 words that really say it all….

“A hundred years from now....it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove...but the world may be different because I was important in the life of a child.”