On Compassion

Ever since Ashlynn (my first born) was a very small child, I have strived to always tell her that she, like everyone else born into this world are born as a very unique individual. I have tried to maintain that theory while raising all three of my girls. Never missing a chance to remind them of their unique qualities that they bring to our family, their school, and everywhere else. And, not every person is alike. Each person has a very special “light” of some kind. All of your talents, all of your gifts, all of the joy and enthusiasm that you give to the world, your smile, your courageous laughter, your intriguing ideas, are all so very important. And, those things combined, make you, you. I think life and parenting is all about teachable moments. With our kids, spouses, friends, family. Discovering how can not only use our “light”, but also be a light to one another...everyday is important. And the best thing about your light, is that you have the freedom to turn it up a notch anytime and anywhere! One should never let their light burn out.

Throughout my life, I have tried to uphold a positive perspective. My perspective is honestly, a quality or a “light” that I have been given that has gotten me through many challenges in life. I know that most people my age have not experienced near the amount of challenges that I have in my life at my age. Perspective is everything. It is not a new thought or anything we have not heard before...but it changes everything. How we choose to view what is ahead. The road we are on. The valley we are in or the mountain we are on top of. Regardless, the only thing we can ever control when life goes array and it will go array. Life is how we choose to see it. To embrace it. To dive into it. Will we see hope, light, and joy...or...dark, deep, and scary. Sometimes they are jumbled together into one. I love that freedom because that is real. That is the human heart. The constant dilemma between our head and our heart and how the two join together. I have seen this many times in my life. But, the biggest event that posed the biggest challenge thus far in my life was when my husband Daniel was diagnosed with cancer. Let me tell you, cancer changes lives!

In April 2011, my husband was diagnosed with a very rare form of leukemia. Such a rare leukemia, that he was only given a 1% chance of survival without a bone marrow transplant. After many months of treatment, he received his bone marrow transplant on August 4, 2011. The transplanted cells were harvested from a gentleman that early on, we knew was very special. Today, we have so much admiration for him and believe that he is truly a remarkable person.

When Daniel was diagnosed, my heart shut down and my light immediately went out. I think that it was months my before my heart started beating again and even longer for my light to come back on. So what made my light come back on?

While Daniel was in the hospital we received many gifts- one of which is a book that you may be familiar with. The book- Don’t Waste Your Life, by John Piper. I read the book in its entirety and out of curiosity, researched John Piper one night while in the hospital. What I found was that John Piper is a preacher, and a reputable author who once was diagnosed with prostate cancer. Among some of the work that he has written, has included 10 points that Christian’s diagnosed with cancer should follow.  I won’t get deep into those ten points, but if you want to look them up, they are easily searchable on the internet. He believes and encourages you to believe that cancer is not wasted when its healed by God. It is important to note that he believes that cancer is healed by both medicine and God. My favorite citation from his resource library is the following:

“So not to pray for healing may waste your cancer. But healing is not God’s plan for everyone. And there are many other ways to waste your cancer. I am praying for myself and for you that we will not waste this pain. He gets the glory and that is why cancer exists. So not to pray for healing may waste your cancer. But healing is not God’s plan for everyone. And there are many other ways to waste your cancer. I am praying for myself and for you that we will not waste this pain”.

The tenth point is most definitely my favorite point- and it has always stuck with me: you will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ.

The night that I read the words within this exerpt, a revelation took over me. I firmly believe that cancer was given to Daniel and I and it is up to us to decide whether we waste it or not. So, today I plan to share with you one part of how I have decided to not waste our cancer by using the “light” that God has given me.

I had to ask myself what I wanted in life. I could choose to be sad, helpless, or anything else similar. Being a positive person a majority of the time, I chose to move on, make the best of what I could, and make a difference somehow with the gifts that I had been given. However, the key thing to the success of my plans was not clear- and that, was my path. How I was going to get there. I didn’t know where to go and I most certainly, felt lost. One night in the hospital, I began to think about what I wanted and what I actually had and how I could combine the two to make something out of them.

What I began to realize is that I have a whole lot of excellent qualities. Yes, my family has certainly faced challenges in life. One of the greatest qualities that I have is that I have a lot of compassion. Now, don’t judge me when I tell you this. But as a young child, I loved Richard Simmons. Not only because of his extreme quirkiness, but more for what he did to help people become healthier individuals. My entire work life has been dedicated to helping people of all ages. As I was thinking about my love for the word compassion, I realized that was what I could offer to the world. To me, the yearning to be compassionate resonates God saying, “HELP! One of my children needs you. Do something!” When I feel compassion, I have to have to ACT upon it. As a nurse, I have learned that Compassion is NOT your heart’s pain in my heart. To me- that’s called pity. Compassion is YOUR HEART’S PAIN INTO MY HEART and it radiates throughout my entire body. Real compassion demands action.

Do you want to know something very special about the word compassion? The first part of the word is compass. We all wonder throughout life without any concise directions. I am a planner. I constantly wonder what should I do next? Where I should turn? What steps I should take? How can I find what I need? My friends, those are normal thoughts.

I use the voice, or the feeling of compassion as my internal compass. With my internal compass- I have found that I can get what I need when I run towards the very things and people and places that need me. With compassion, all that is required of me is to reach out my arms, open my hands and help someone out.

Compassion for others has allowed me to not waste our cancer and most certainty has got us to a place of acceptance of the uncertainty.

I believe that cancer has brought any great opportunities in our life. We have developed many new friendships that would have never of been formed, had cancer not presented itself in our life. The most incredible friend that we have is Dominic, Daniel’s donor. Dominic is a 45 year- old man from Germany. He is married and collectively, he and his wife have 3 children. He is an incredible man! While we communicate through facebook, it is our desire to one day meet him, as he is very special to our family. And, so I introduce Dominic to you:

Personally, cancer has made me a better wife, a better mother, a better friend, and much more compassionate which has ultimately led me into the career of nursing. Our journey through cancer has lended me the courage needed to know that what ever I am doing, whatever I do, wherever I go, and whatever happens, I have a newly developed strength to get through it.

I want to do things that I do not believe that I can do. I want to live life in a fuller, deeper, and richer way. He is strong when we are weak. He gives us everything we need even when we can't see it and we are scared and we feel alone and we not sure what is ahead. I embrace this new perspective. This new view on life- I am oh so thankful for it. Is there still pain and heartache and deep wounds in cancer. YES, of course.

I have many days where I struggle to find ways to nurture my children, and days where I definitely want to undo what I have done, and definitely days where I feel inadequate. I am sure that you have days where you struggle. Throughout all of this, I have learned that you just don’t know as much as you think you do. I constantly find myself always learning and attempting to correct myself along the way. I have found that if you learn to adapt, things will eventually work out. Trying to understand how or why this happened has been a challenge that I still continue to face daily. I constantly worry about our future. The future of my children, what life will look like 5 years from now and so on. Every time that we drive to St. Louis for lab-work and appointments with Daniel’s cancer doctor, I worry. To be honest, I am not sure that those feelings will ever subside.

Today, We have a new life, I have a new job, I have a new school curriculum, Avery started first grade this year, and this year, is the first year that Mia has attended day care by herself. My children are constantly adapting to new, new, new. Sometimes, I feel that all of this combined has left little room for any of my children to grow as they are constantly struggling to adapt. On the other hand, I also find my self very proud of my children because they are doing so well, and growing and developing appropriately.

I can gladly say that I finally feel like I have arrived full circle, and I am right where I need to be. And, I have no idea how I got here other than a supportive community, a positive perspective and the many prayers that I said and the prayers that have been sent up for me. I think that most people worry about their future and their children’s future, so I believe that my thoughts are pretty normal.

Today, I choose to embrace the unknown and the lack of control in life. The fact that things rarely turn out the way we want them too, IS OK. Like other cancer survivors, I choose hope and courage and strength in whatever may come.

Today, I want to challenge you to run towards your family members, or friends, or someone that you have never met. Listen to their stories and look at their pictures. And while you do, please pay close attention to your own body. Notice how you feel. If you feel that familiar tug of compassion, let it be your compass. Let it be the voice that says- TRY IT, GO FOR IT. Give your family members, your friends, or those that you have never met, what they need, AND THEN SEE IF THAT OFFERING RETURNS TO YOU WHAT YOU NEED. I promise you, it will give you what you need. Results aren’t always immediate, and sometimes they take time. Jump in, get involved. See, if just for today, ­offering a stranger radical love provides you with the senses of peace, belonging, joy, and empowerment that you may be searching for. I encourage you to let compassion be your compass today. No matter what challenges you face, please, never dim your light, or let it diminish the least little bit. Don’t ever think that your light is not good enough, for it will shine brightly one day.

Who YOU Are!

I have been blogging for a little over 2 years now. I don't know if you've noticed, but this little blog has been viewed nearly 56,000 times! That's crazy! But, for 2 years, y'all have gotten to know me, you have followed the Presley family through crazy times, even when times weren't so great. This blog began almost immediately following a cancer diagnosis that ripped our family apart. Y'all followed daily, not really knowing if it were a good day, or a bad day with Daniel. About a year ago, I contemplated continuing to blog. Daniel's health was continually improving... And it seems life got down right crazy!

One night, I went back and read my entries from the very start, and I quickly realized that there was so much that I had forgotten. That's when I decided to continue writing. Mainly for my children- the blog serves as a reminder of how cancer affected us. And so I arrive here today. Even more glad that I blogged (I will get to that point shortly).

For 2 years you've gotten to know me well. Often, I wonder who YOU are... Because, I see the states and countries from which my blog is read. And, every so often, I get a email indicating how the blog has touched them. And, I would love to share them with the rest of my readers. However, out if respect, I tuck them safely away, reaching for them when I need a few words of encouragement.

My stumblings and failures and imperfections … AND my strengths – I put each and every one of them out there. It started for the kids but somewhere along the way YOU started to read, too.

And you looked the other way when I made mistakes, knowing that somehow, somewhere, I would figure it out.

And you cheered me on when I finally did.

And you forgave me when I was incapable of responding to your kindness and you understood when I didn’t leave my house for months on end except when I had to take the kids to school. Or for food.

And I often think about just how afraid I was. How sad and scared and how I was incapable of holding conversations. 

All the times I would look at people and watch their mouths move and didn’t hear a word that was coming out.

How I could see the love, or sadness, or empathy in their eyes but I couldn’t feel anything at all.

You were still there!

This week, I could not have been more proud that I blogged. A new follower of mine just happens to be Daniel's donor. For now, we shall call him " D" out of respect. A man, who is so incredible. Because I never remember details... I'm so glad that he can read every entry to see how much he impacted our life! I truly look forward to sharing more about him... He is an amazing, kind hearted  man with a very interesting story!

And so the purpose of this blog becomes even more clear to me. I'm even more thankful tonight for each of you being there, for checking in, and simply... Keeping it real! It's about the Presley's in this moment... Isn't it?

Xoxo Kristin

2- Years... Post-transplant

August 3^rd we celebrated a cancer-free diagnosis with 1,000 other folks who are just like Daniel. Folks that too, have received bone marrow transplants. This year happened to be the 20^th celebration- twenty years of transplanting stem cells. It’s amazing how many lives have forever been changed because of volunteer donors. Research has come a long way- and there is still room for improvements. We meet new cancer friends each year, and this year we met some amazing men and their wives who were transplanted not long before Daniel. So, you compare stories and ours is nothing like theirs- which reminds us of how blessed we truly are. After the gala, we attended a small, private celebration with Dr. DiPersio, his staff and other physicians within his circa. His nurse practitioner is truly the finest, always putting up with Daniel’s shenanigans, and providing her time to listen to me and my concerns, never misunderstanding anything! We have formed such a good relationship with all of them. As she introduced us to research staff, she would give them inform them of the type/ types of leukemia that Daniel was diagnosed with. As she put it –“it’s the really bad kind of leukemia”. Which, always gets a interesting look from folks- apparently, he doesn’t fit the mold. I guess, he’s pretty special in the leukemia world, most like him don’t survive. As they discuss him and his future, I really do feel blessed. His outcomes have been nothing short of excellent- any of the physician’s up there will tell you that! Hearing that, gives you a really good feeling, but at the same time, makes you want to vomit. So, I find myself trying to remember that the only thing that we can control is the present- what is right here in front of us. It is hard. Really hard, when you are quickly reminded that we are in a really good spot with the current state of Daniel’s health. It is easy to get wrapped up in your insecurities and fears in life. Dang it, life is hard any way that you look at it.

I found this quote- it helps remind me that time heals. And no matter how much the world is pushing against me, I am so much stronger!

“In the midst of winter, I found there was,

within me, an invincible summer.”

Acceptance and acknowledgement of where we have been, where we are now, and how we have gotten here are reminders of the greatness of life itself. Sometimes, we just need those reminders that have given way to life. I know that we have just had our share of unlucky times. However, I recognize that the tide has turned. And, I can’t tell you how incredibly thankful I am for that!

XOXO, Kristin

A Birthday Post

I guess it’s that time again, to create a list that the last year has taught me. A few short hours ago, I properly packaged up and said good-bye to my thirtieth year.

Here are a few things that 30 taught me:

-       Witnessing Disney in your children’s eyes for the first time is nothing short of the term magical!

-       Graduating college at 21 is sweet, but graduating college at 30 with three children, a husband, and grown-up responsibilities is BITTERSWEET!

-       During the last two years of my life, I have met some gals that will forever remain extra special in my heart. One day short of my 3oth  year of existence, 2 of them were able to help me fulfill one of my bucket-list items. A pact we made some time ago…. To take our NCLEX (nursing boards) together in Springfield, Mo. Who knew that busting your tail to study day in, and day out for 2 plus weeks would do nothing for you but make you say “You have got to be kidding me” and quickly realizing, that you must have studied the wrong material would make you mad, frustrated, and exuberant all at once? I must say, Hannah, Janette and I- quite the team we are! We must not forget about Miranda or Amanda… they are very much apart of the team, just weren’t able to make the trip.

-       There is nothing more critical than taking just a few minutes to stop and play with your children.

-       I’ve learned that being and “ideal” weight is a good goal, but a better goal is to be healthy.

-       It’s okay to define your own definition/ version of the term “mom”. And, it really is okay if it looks much different than what you may see around you.

-       In my thirtieth year, I learned to recognize that being broken is okay and even more so, important. You can never know too much of anything. Learning new information can transform you in ways that are breathtaking. L

-       I’ve learned that, Yes, I am capable of so much.

-       Finally, I have learned that birthdays are very special. Celebrate them! This birthday is exactly one-month short of a very important birthday in our household- We celebrate 2 more years of healthy, cancer-free cells in Daniel’s body. Near that birthdate, we hope to gain information that we have dreamed about regarding Daniel’s donor. A true hero he is and we yearn to explore who he is.

Now, I can properly store 30 away and graciously welcome my thirty-first year. 

Some People Are So Poor... All They Have is Money

Did you watch The Voice? We absolutely lived to watch that show weekly. There is a lot to be said about me watching any sort of television show. I don't watch TV often. In fact, I most days, the television never even gets turned on at our house. I don't have the ability to sit and watch television or movies... without being bored out of my mind. I know- its a bit crazy. Anyhow, a few weeks ago the Swon Brothers sang a rendition of Danny's Song. The version that I am most familiar is the Anne Murray version (it's the country version). In fact, it was a song that was played at mine and Daniel's wedding. Ashlynn asked me what the meaning of the song was that night and I explained to her the meaning behind the following part of the lyrics:

"And even though we ain't got money, I'm so in love with ya honey,

And everything will bring a chain of love.

And in the morning when I rise, you bring a tear of joy to my eyes,

And tell me everything is gonna be alright."

And, while in discussion with her about this, it brought me back to my childhood. I grew up in a middle-class neighborhood called Meadow Bend in League City Texas for most of my childhood. However, across the street were the big houses, the mansions- their neighborhood was South Shore Harbor. They had gates with a call station you had to go to before you could enter. And, on Halloween... those were the best houses to trick-or-treat at. Famous folks lived there. Astronauts lived there. When I was little, I can remember casually asking my dad if we were "rich". I guess it was just me trying to figure out how I stacked up against my friends. I can remember him getting so mad at me for asking that question. In fact, I will never forget that look in his eyes that vary day when I asked him that. Both of my parents were very hard working folks. He stopped in his tracks and said to me "We are rich in family, and in love, and that is all that you should worry about." Today, looking back, I find it kind of ironic that he of all people would say that.

But the other night, that thought came back to haunt me. It's strange. Maybe, it was that I finally understood what was being said that day. It was just 20 years or so later....

But, that dad disappeared shortly after because of the addiction problems that he continuously had that ultimately led to a divorce that left my family is shambles for quite some time. Maybe, his lesson didn't mean that much to me until I had my own family. That night, I thought about him. How he came back into my life in 2008 and passed away in 2010- actually on mine and Daniel's wedding anniversary. Poof... gone just like that. 

I think about what he meant by the term "rich in family", and I get it now. Because, I am very rich in family and I feel that "richness" each and every time that I witness my children doing something amazing (Ash mastering her gymnastics routines, Avery gleaming because she wrote her name, and Mia learning from her sisters), or Daniel cuddling with his girls in bed, reading to them. That richness doesn't stop there. I feel it when I talk to my mom on the phone, when I look at the amazing friendships that have cultivated into a sister-hood... and even more richness is felt when you have that sense of feeling important by those that you love. We are "rich", very "rich".

So tonight,  I think about a man, who isn't here today, and ultimately never got to see the value in the lessons that he taught me so early in my life. Those lessons, continue to bare their fruit as I share them with my children. Its funny how our thought patterns work.

In other news... Here are some dates to keep in mind. Prayers appreciated greatly:

July 10th- Daniel has a surgery scheduled to repair a abscess that created a fistula. If you remember, he had a surgical procedure a few months ago and it was far too complicated to repair at that time. Surgery is not the best option for Daniel because he is at such a huge risk for infection. However, it has to be done. 

July 22nd- 2-YEAR FOLLOW-UP with Dr. DiPersio. This is our BMT follow-up. This will be a big day with a whole gamut of tests to be completed.

Finally... sometime in July (I am not giving the specific date), I am taking my state boards. Wish me luck! 

XOXO Kristin

2 Years... An Update

Although things seem to be going well (very well), there is still a place inside my heart where I ache over cancer. Being at Siteman Cancer Center brings me back to the road we walked. Vivid reminders of what it all looked like and what it felt like for us. Sometimes, I still have a hard time even believing that cancer even happened. At times, I even catch myself thinking...other people get cancer. Not Daniel, not us. That kind of thing, happens to other people. Right? But, days like today, remind me quickly, that no it doesn't. It did touch my family. And, statistics show that it will most likely, touch yours eventually.  Maybe not cancer. But something big. Something scary. Nothing about cancer or any major sickness even, is fun. Cancer is horrible. Chemo is horrible. Getting blood drawn regularly is horrible. Answering your children’s questions about cancer and death… is horrible. Every time Daniel gets the least bit sick, the girls automatically say “I hope daddy doesn’t have to go to the hospital for a long time”.  It’s emotionally and physically draining. However, cancer is but something that can end up being one of the greatest things that will ever happen to you. Daniel did not walk that path alone, and neither did I. We were never alone. I know that it wasn’t only up to the great physicians that we encountered, or the treatment facility, or the wonderful drugs that he received. Daniel and I learned a great deal about one another through our experience.  And, we learned trust. So for that, I am thankful.  With time, we are beginning to heal and I am finally understanding this.

Today, we were waiting to see Daniel’s nurse practitioner after the gammit of bloodwork. Next to us was a young lady that was probably close to our age. I noticed that the she had a bag that had a distinct drawing on the front. For those who may not know, Dr. DiPersio (Daniel’s dr) founded Siteman Cancer Center. In fact, there were only 2 oncologists in the entire Barnes Hospital when he came on board. Anyhow, yearly, he has a celebration for the survivors of bone marrow transplants. Each year, he draws a new “cell man”. This year marks the 20^th year that Siteman has been transplanting stem cells. This year is a huge year for those survivors as well as Dr. DiPersio. Anyhow, that bag, had the picture for this years celebration. So, I asked her if she was attending and she said, “ This year will be first. I’m 69 days post-transplant”. I engaged in some conversation with her and she discussed her feelings and how scary life post-transplant seems. I directed her towards Daniel. And said “look at this, this is what 2 years post-transplant looks like”. As she was walking back into the treatment rooms, she said “thank you, that is very encouraging- because he looks really good”.

Two full years after a cancer diagnosis. What does life look like for Daniel? Daniel does not live the same life that a normal 31 year old does. He still takes many pills, including a low-dose chemotherapy pill daily. He receives and IV immunoglobulin treatment every 6 weeks, he still follows up with his doctors in St. Louis every 3 months, he has incredibly dry eyes due to the lack of tear making capabilities that GVHD has caused and most importantly, he still has the immune system of a newborn baby. However, he never lets it get in his way. Today, we saw his nurse practitioner for his 2-year post cancer follow-up. His lab work looks great. He looks great. Still battling a colorectal problem, which involves a pretty big surgery in the next month or so (biggest risk- infection). Other than that--- he is doing great. We also saw his eye doctor. He believes that his eyes have improved and with due time, will improve greatly. He informed us that sometimes, it could take 3 years or so to see those improvements. Daniel heads back to see Dr. DiPersio in July and will then go through a more extensive round of tests which include his annual bone-density exam and routine blood work that checks for the Philadelphia chromosome (you know, the one that caused all of the problems to begin with). Notice, I did not include that he will be having a bone marrow biopsy! I am not sure that he will ever have another one- unless there is suspicion that needs to be further investigated.

Since I last wrote, I am closer to graduating nursing school. May 18^th is the big day. A day that we all are very much looking forward too! I have since enrolled in a bachelor’s program. I can’t seem to stop where I am. I have big dreams--- so bare with me! I have enjoyed my children so much the last few weeks. Mia has finally become very verbal. Ashlynn is wrapping up 2^nd grade and Avery had kindergarten screening a few weeks ago. For a while, I’ve been somewhat transparent about Avery. Focusing more of my energy on Mia and the lack of verbal skills that she possessed and that she was still taking a bottle at night (which she is no longer doing), and the fact that she isn’t potty trained, that I became very insensitive to some of Avery’s needs. But sometimes my transparency helps … so I share with that in mind.

Avery is such a loving, bright little girl. She just has always marched to her own beat. And gets in no hurry what so ever. Never really interested in what others are doing, she happily does her own thing and just sort of collides with what is expected of her (to be potty trained, to pay attention to directions, to wait her turn without zoning out, to stay out of people’s personal space). And because of it, little flags are going off that she needs some help catching up. I worry that kindergarten is going to eat her alive. I don’t want her to be judged.

Trying to understand how/why this has happened (she is not challenged in anyway…she just doesn’t see the importance of the expectations placed on her) – and of course, my lack of attention giving ability with school and Daniel’s needs over the past two years, has left little room for her to settle in and just grow. She has been busy constantly adapting. This makes me also realize how proud of Ashlynn I am. She is doing so well with the hands she has been dealt – (especially since he is older and more aware of what happened). Ashlynn naturally, gets things, whether in sports, academics, whatever. She is extremely intelligent and requires little directions.

So, today I struggle with how to help Avery. How to nurture her. How to undo what I can. It’s often a feeling of inadequacy.

I want to thank you for continuing to follow me… and for being patient and as always, continuing to keep Daniel in your thoughts.

XOXO Kristin Presley