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

Sink or Swim...

Its been a while, I know. I feel like I have been leading a secret life the past year and a half for a few reasons.. Early on (first semester), some crazy stuff went down with some of my classmates and social media, which pretty much resulted in us not being able to say much about nursing school. Another reason, is that I feared failure, and decided not to really speak much about school itself. I guess that I am by far, more conservative than I thought and more fearful than I chalk myself up to be.  But, I can now say that I took my last final and have moved on to my preceptorship. May 18^th, I receive my nursing pin.

I have a huge sense of relief, and it feels good. The last two years of my life have been extremely chaotic. I have to really think about what year Mia was born, and what year Daniel was diagnosed… because it all seems like a huge blur. And when I talk about my “plan b” becoming a reality, everyone wants to know what my next plans are now. And, the truth is… I don’t know. I am trying to decide on continuing my education or to “just be”. Do I get my BSN, and continue on with my Masters, or do I use my original degree and go straight on to my Master’s… I know that you can’t go wrong with more education, but part of me wants to just take a break. And a job? I have no clue what area interests me the most, because it all does! Do you see how confusing this is? So many decisions to be made…

Trying to go with my heart. Wondering if it’s right or wrong….

For once, life seems simple and satisfying. I yearn for a heart that isn’t so numb, a schedule that isn’t filled with busy-but-not-important things, and the common sense to re-prioritize things that are not working for me anymore. And, there is a whole lot of that in my life!

I’m noticing the girls are growing up overnight at a faster pace than ever before … and it feels awful.

Which reminds me. We are coming up on a 2-year anniversary. Two years! Has it really been that long? I think about how young the girls were. A few weeks ago, Ashlynn was producing some mad artwork. She made a leukemia awareness poster, orange ribbon and all. How did she even know that Daniel had leukemia? At first, I was so sad for her. He is their Dad. I still have a feeling of vulnerability everyday, you know. Is that normal?  Not that he is going anywhere. But he could. Does that make the least bit of sense? I still have a huge hole of lonliness that I really hoped would be filled by now, and it isn’t. With all of that being said, I truly know that our family is truly blessed. Its really just that one moment when you look over your shoulder and you realize that your past is barely visible and ask yourself if you are indeed, doing the right thing.

And I guess I don’t know that answer.

Please keep Daniel in your prayers next week- Wednesday specifically. He is having a minor surgery (we hope). He has been cleared for the procedure through Dr. DiPersio, but we are also aware that he truly isn’t the best candidate for any surgical procedure. More on that… sometime next week.

XOXO Kri

Happy New Year

We didn’t toast champagne; I didn’t wear a dress with sequins or glitter. But from the way that it felt… there was a promise of something good present, and there could be nothing any prettier or better!

We witnessed the magic of Disney through our children’s eyes…. AMAZING! Lot’s of firsts… thankful that we were able to experience them together!

2012 was good to me, and my family. No doubt about it. I will always remember this year. The people. The experiences. The books that I have read. The travels. The best family road trips ever. Good health. Brilliant physicians. Most of all, the continued growth within my family.

I have learned in the last year that “life” may not go as I planned it. Secretly weeping, doesn’t do any good. Being angry, definitely doesn’t change things. I have realized that uncertainty in my future is meant to be- that goes for every single one of us! I have finally learned (somewhat) to let go of my life plans- and just let it be! I am finally at a place where I feel like I can breathe again, and it feels wonderful, and refreshing.

Most of all, I am thankful for the blessing of having a supportive husband. One who is always there. We talk about being supportive spouses often, and he regularly expresses gratitude towards me for the support of him and our children while he was in the hospital, the transplant process, and the “after” process. None of which are easy. I have learned that, for our life experiences, I have never loved him more!

Being able to look ahead for the first time in a while, and not be afraid—feels so good!

As we ended our final evening of 2012 as a complete family, I looked up into the sky and whispered “All of this? Thank you, thank you, thank you!” And made a promise that I most certainly will do something good with the blessings that I have been given!

Here is to the start of something good….

XOXO, Kristin