Eli and Britt drawing on the window with dry erase crayons

Brittany's entry into the DTP Awareness competition. The topic was how DTP has affected you and your family. Her illustration shows that we adapt. Eli and Britt can still have an awesome Nerf gun war no matter where they are.

One of Brittany’s online groups was holding an art contest and Brittany decided she’d like to enter a picture. The theme was how your life and the lives of your family has changed with your diagnosis. As she thought about it, she commented to her dad that our lives haven’t really changed. He reminded her of how drastically things have changed for us. But, the basic elements of our life have not. One of the blessings of this time is that we have had to simplify our lives. We have had to eliminate the non essential items and just continue with the things that are important. It has helped us to focus on our religion and our family. We used to participate in many extracurricular and community activities that we have put on hold for now. The activities we still do are generally those we can do together. Eli and Kelly do karate together one night a week and Brett and Eli started a running/walking excursion every morning. And we spend lots of time with Brittany wherever she is. We have found that we value our time together. Our home is our family and that togetherness can occur at home or at the hospital. We enjoy our weekly family home evenings, playing games and having lessons and songs (we usually leave the refreshments at home although we do have snacks in the cupboard). Brett has been able to move his meeting and interview schedules around so he has the whole evening to be with Brittany while Eli and mom are at karate, who would have thought that was possible. Brittany and Eli love their time together at the hospital. They watch movies, do crafts, draw on the window with dry erase crayons (the coolest new invention), and have nerf gun fights.

Dieter Uchtdorf, one of the Apostles from our church, in a recent talk, reminded us that it is easy to get away from the basics because of the busyness of life.

“The wise … resist the temptation to get caught up in the frantic rush of everyday life. They follow the advice “There is more to life than increasing its speed.” ¹ In short, they focus on the things that matter most.

Elder Dallin H. Oaks, in a recent general conference, taught, “We have to forego some good things in order to choose others that are better or best because they develop faith in the Lord Jesus Christ and strengthen our families.” ²

The search for the best things inevitably leads to the foundational principles of the gospel of Jesus Christ—the simple and beautiful truths revealed to us by a caring, eternal, and all-knowing Father in Heaven. These core doctrines and principles, though simple enough for a child to understand, provide the answers to the most complex questions of life.”

He continued:

“We build deep and loving family relationships by doing simple things together, like family dinner and family home evening and by just having fun together. In family relationships love is really spelled t-i-m-e, time. Taking time for each other is the key for harmony at home. We talk with, rather than about, each other. We learn from each other, and we appreciate our differences as well as our commonalities. We establish a divine bond with each other as we approach God together through family prayer, gospel study, and Sunday worship.”

These things don’t require us to be in any specific place, only in specific times together. We are grateful that we have been able to simplify our lives, to be able to get rid of the busyness and enjoy time together. We rejoice that we can strengthen each other.

-Mom

A Tribute to a Little Warrior

My turn!! (Britt)

Today was really long. Really tiring. Both emotionally and physically. But I won't get into the nitty gritty details-that's what Caringbridge is for. So instead, I pay tribute to a 'Little Warrior'.

Around May time frame, near the beginning, my DTP sis, Roxanne, told me of a little girl with a brain tumor. Lindsey. When Roxanne was sharing a room with her at the hospital in Alabama, Lindsey wasn't doing well. They weren't expecting her to make the night. But here I am, August 19, paying tribute to a brave little warrior who held on much longer than the docs expected. She hung on, fighting courageously with the strength of Hercules. Over time, I grew to love her like I would a little sister. She was about the age of some of my little cousins. I received strength from her example as she defied the odds and hung on. But last night, my little hero moved on to bigger and better things. Right now, she is pain free, free from the physical body that trapped her free and innocent spirit. When I found out about her passing, my heart began to ache so much that it physically hurt. I can only imagine. What if she was my cousin? They were close to the same age. I can only picture how hard it would be to lose her. I know that this little girl was an example to thousands of people. Her strength and courage lifted many. And her example continues to live on.

As I go through this, I remember how important it is to look for the tender mercies in our lives. I have so much to be thankful for. Sure, my diagnosis isn't so hot. But I'm alive and fully functioning (well, most of me). I'm able to talk with my family. To play with my little sister. To help lift and strengthen those around me. I may be in the hospital a lot, but I am able to maintain a somewhat normal life. I am so grateful for everything in my life. Life is SO good. Amazing family that I get to be with for all eternity. A bestest bud in the whole wide megacosm (Who has, by the way, made me promise that I would never let go and give up. I told her don't worry, I'm not going anywhere <3). An amazing support group. Close friends I consider family through something that people often take for granted. If it wasn't for facebook (not to sound like a facebook addict), I wouldn't have met some of my closest friends-friends I consider to be brothers and sisters-friends who are there for me no matter what. Everyone in my life has been such a strength to me. How could I ever feel like my life was horrible? I have so much to be thankful for! Heavenly Father continues to show His hand in my life. I don't know where I'd be without the gospel. My Heavenly Father and Jesus Christ have lifted me when I was down. They have allowed me to grow and strengthen those around me. He has blessed me with SO many talents and has given me endless opportunities to share them with others to bless their lives.

I want to remind all of you reading this to watch for the small things in your life. Even though things may start to look dark and hopeless, there's always a ray of sunshine somewhere. You just have to look for it. We are blessed with SO much. Take a look at your life. There's so much we've been given. I don't think I'll ever take my blessings for granted ever again.

Please include Lindsey's family and friends in your prayers. They need strength and support. They need that spiritual boost that will help them get through the death of our little hero.

Mom Post #1

Here's Mom's post. Sorry it took so long for me to get it up-when I get into my Scooby Doo, I really zone out. But anyways. Introducing the wonderful and fantastic...MOMMY!!!

Mom:

We were a normal family before February 25, 2009. We were busy with extracurricular activities, church and community activities. We loved outdoor activities. We thought that life was crazy but felt pretty blessed. The past two and a half years have changed so many things but we still feel crazy and blessed. One of our favorite scriptures is 1 Nephi 1:20 “But behold, I, Nephi, will show unto you that the tender mercies of the Lord are over all those who he hath chosen, because of their faith, to make them mighty even unto the power of deliverance.” We decided to start this blog to talk about the tender mercies that have been part of our lives since this all began. One of the most important things we have learned is that God is aware of us and cares about us. Over and over, through our scripture reading or from impressions of the spirit, we receive revelation that reminds us of the power of God. We don’t fully understand the whys behind everything, but we are so grateful to God for the knowledge we have gained of His reality. We can make it through because we are not alone.

So I'm a kid who loves life and likes to stay active. I've been drum major of the marching band for two years in a row and was selected to play in several Allstate bands on trumpet. I love swimming and would join a team if I could. I draw and write a lot. My drawings are famous in my home away from home, GPU at UNM Children's Hospital. My life was halted by all the fun medical issues I have. Take a deep breath, there are a lot here:Gastroparesis, Chronic Intestinal Pseudo Obstruction Syndrome, Chronic Line infections, Asthma, Tendonitisin the wrist, a Pseudotumor in my brain, Adrenal Insufficiency/Addison's Disease, Progressive Autoimmune disorder, and a bunch of really evil allergies.
I've been in and out of the hospital a lot the past two and 1/2 years, and I've got many more admissions ahead of me. I've had admissions as short as four days, and I've had admissions as long as three and a half months (that was supposed to be an overnight motility study). They usually range around one month. Over the past year, I've spent more time inpatient than out.
I still play the trumpet and piano, and I try to get out when I can. I write most of the time along with drawing. I love to be creative, and I love to do a lot of engineering. I try not to let this illness get me down.
For those of you who have not met or seen me in person, I am just about more tubes, tape, dressings, and silicone than human! I have a gastrostomy tube (for draining the stomach), a jejunostomy tube (for minimal feedings and meds), an ileostomy, a mucus fistula/colostomy, and I go through central lines like crazy because of the infections. I've had 17 PICCs, 2 Broviacs, and 1 tunneled IJ. I'm very grateful for the central lines-they are what is keeping me alive.

The purpose of this blog is to point out all of the good things in life right now. Keeping a positive attitude and a grateful heart are vital to surviving and coping with a chronic illness. I hope you find strength from this blog kept up by me and Mom. Thank you for your love and support!