Perspective


Ashtyn and I have different perspectives of time. We have been in the hospital for 27 days and it has gone by very fast for me. There is not a moment of boredom where I can kick up my feet and wonder what I should do with my time. There is always something to do. When Ashtyn was really sick her needs were the same whether it was day or night. I slept when the opportunity presented itself. We never had more than a couple of hours of sleep without an interruption of one kind or another. Days and nights were intermingled with sleep and activities. After so many nights of interrupted sleep and days of constant physical or mental tasks, I am tired. Very tired. I think I could curl up in bed and sleep for a couple of days, begging that no one interrupts my sleep.

Ashtyn shared her perspective of time today, “I’ve been in the hospital a long time. It seriously seems like a year. Every day goes by slow.”

Facing cancer means that you face physical and emotional challenges. The week Ashtyn was diagnosed with cancer, she felt and had to deal with emotions she had never had to conquer before. From my post “God’s Orchestra” on February 5th, I wrote: “Today was a day that she grieved. Grieved for losing the life she once knew. It was a day of sorrow for not being able to go home. It was a day of stress with all the medications, vital signs, medical talk, and being attached to an IV pole. It was a day of depression, not wanting to socialize. It was a day of frustration with not having control of anything.”

The two weeks following she became very sick from chemo. She had physical pain that she hadn’t faced before. She remembers the pain and not being able to speak or swallow. From the post “Relying on What I Know” I wrote, “Ashtyn is sick. Very sick. She can hardly talk. Can hardly open her eyes. Can hardly walk. Can hardly sleep comfortably. She can’t eat. Can’t drink. Can’t laugh. Can’t cry… Today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.”

Now that Ashtyn is feeling physically better with each day, she has to again deal with more emotional struggles. Her temperature, heart rate, and respiratory rate are normal which gives her more of an ability to focus on the ramifications of cancer. Now that she isn’t on oxygen, throwing up, coughing up mucous, or having continual medical staff around her, she has the strength to contemplate every moment she is in a hospital bed. Now that her eyes are wide open and she isn’t sleeping all day, Ashtyn has the time to long for the life she once knew.

Last night I talked to her about shaving her head. The only hair remaining was a thin layer that seemed to be holding on for dear life. Obviously she needed to shave all her hair so when it grows back it will do so evenly. This week seemed to be the week to do it. I validated her feelings by letting her know that it was going to be very difficult. I suggested that instead of just having me and her dad there, that she invite a few family members to be by her side to support her in this milestone. At 9 pm we gathered together in her room. I got special permission to have more than two people at the bedside. She had her two uncles Jared and Casey, her two aunts Alisa and Kristi, her dad, and me there to get her through it. Though she had agreed with the plan several hours previously, she sat on the couch curled up in a ball, “I don’t want to do it.” She was holding on to the small amount of hair she had, not wanting to let it go. What would she be letting go of if she let go of the remainder of her hair? Maybe the last bit of hope that she wouldn’t actually have to be bald. Maybe the last amount of hope that she doesn’t really have cancer but instead has a bad case of mono. Maybe it is holding on to the last thing that makes her who she is, when everything else has been taken away. Whatever the reason, she didn’t want to do it. There are a lot of things she hasn’t wanted to do in the hospital but she has always faced the challenges calmly without kicking and screaming, and does what she has to do.

Ashtyn didn’t want anyone to shave their heads to support her. It wasn’t a need she had. I don’t think she wanted to look at others bald since that wasn’t normal to her and she didn’t want to be reminded of her own baldness. To help Ashtyn get used to the electric razor, her uncle Jared sat on a stool for her to practice on. She used a number 7 hair clipper to trim the back of his head. After several swipes she didn’t want to do anymore. Her uncle Casey finished trimming the back of Jared’s head to even it out. After Ashtyn was able to handle the razor and watch Casey’s shaving skills, she was as ready as she was ever going to be. She sat on the stool and bravely allowed Casey to shave her head. She didn’t fuss, complain, or cry. She just took it. Afterwards she laid on the couch with a blanket, closed her eyes like she was asleep, and didn’t say a word. Jared sang a song with his guitar about her old and new hair. She did quietly laugh a couple times. When the song was done, her support team gave her kisses and left. We sat in bed and laughed a few times while watching Modern Family. At 2:30 am we fell asleep together in her hospital bed without ever speaking a word about what had happened that night.

Today she is struggling emotionally. She knows she needs to be happy at times. She knows she needs to be optimistic and find joy in her journey. She knows the importance of not forgetting who she is. She is a happy, funny, beautiful, smiling angel. She knows not to lose that light within herself. But not today. Today is a day to feel emotions that are real and understandable. “I am bummed just like anyone else would be.” Today she doesn’t want visitors. She wants to be left alone. She doesn’t want to talk. She doesn’t want to be talked to. I can tell that she is going through something she feels she has to do alone. Is she feeling anger, depression, sorrow, remorse, irritation, or discontent? Probably. However, I can’t ask her about it. It is my role to sit quietly in the corner, giving her space and time to feel what she needs to feel. But as she faces her emotions quietly within herself, I know she doesn’t feel alone. She does know there are hundreds of people that care. She does know there are hundreds of people that pray for her and support her. Ashtyn may need to sit in her hospital bed, by herself, in silence. She may feel she needs to be left alone without reading your encouraging words, or seeing people around her bed, or feeling the hugs of others. She may want to have time alone to go through the realization and depression of cancer and losing her hair and everything else she has lost when cancer came into her life. But as she faces her emotions “alone” for now, she knows she is not truly alone at all.

So here we sit in silence. I don’t know what she is thinking about or what is going on in her heart. Whatever she is going through, I know she’ll figure out for herself how to face the future. I believe she will face it exactly how she’s been doing it so far, with faith, optimism, and courage. She will rediscover her strength and abilities. She will recognize her inner and outward beauty. She will continue to lean on her Army for support, love, and prayers. She will press forward with hope and faith, remembering “Don’t give up. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. Trust God and believe in good things to come.” Elder Jeffery R. Holland


11 responses to “Perspective”

  1. Sending positive thoughts for all of you. I don’t know you, but after following all this, I feel I do. Ashtyn is very blessed to have so many loving and understanding family members right now. God Bless You All!!! Laura

  2. In the depth of winter, I finally learned that within me there lay an invincible summer.
    Albert Camus

    Hang in there, Ashtyn! You are amazing.

  3. So amazed at the bravery Ashtyn shows daily. Proud of her! What an example she is to so many of us! Hair or no hair she is a beautiful angel here guiding us! What a bright light she has to share in a world where darkness threatens at every turn! Take your time to cry Ashtyn… For even your tears are beautiful! <3

  4. Dear Ashtyn, I have a granddaughter with your same name. I want you to know that many are praying for you. My Grandson, Dane Pearce, from Colorado was diagnosed with AML Leukemia in March of 2011 his birthday where he turned 11 in Children’s Hospital, Colorado. He is now in remission and doing great. I know this journey is not easy. I hope some of the items I mail you will put a huge smile on your face. I am Director of Legos for Leukemia, VA (UVA Children’s Hospital.) This started in Colorado in 2009 by a young boy who’s Dad had Leukemia. In honor of him, he started Legos for Leukemia where he collects Legos and delivers to the CHC. I brought it to Virginia and now it’s all over the United States. Our goal is to help children like you to have a brighter day and have a huge Smile when you have your Lego delivered. Much love and prayers your way, Giana (Gigi for Grandma Giana) Director of LfL VA.

  5. Again, so amazed by Ashtyn’s courage and bravery. Ashtyn, thank you for continuing to be such an example of strength. Savannah misses having you in class and can’t wait to see you again. We are praying for your recovery and continued physical strength. Stay strong.

    Suzanne, you are a beautiful writer. Thank you for all the continual updates and for your unwavering example of faith. It’s truly inspiring to see your positive perspective on such a heart wrenching experience. I can see where Ashtyn gains her strength from. Our thoughts and prayers are always with you and your family.

  6. WOW…Ashtyn, you are truly amazing! You have no idea how many people you have impacted. I am brought to tears and get goosebumps every time I read a blog post. You were given a very tough trial in your life and you have chosen to stand up and face it head on with no reservations.You know you are going to beat cancer and you are going to stay strong while doing it! Your faith is incredible. I have no doubts that you will beat this, you have such an amazing team of people supporting you. I am proud to be a member of Ashtyn’s Army! You have an amazing mom who is in tune with the spirit and always seems to know what is best for you. What a blessing she is in your life as well as you in hers! You both make me want to be a better person! Keep fighting girl!

  7. Ashtyn, you have always been wise beyond your years, and you continue to amaze us all with your faith and courage. By going silent today and pondering everything you are going through, you again show how mature and wise you are. I pray the Heavenly Father and His angels will continue to be there with you to comfort you and heal you. And all of us who are following Ashtyn’ Army are blessed by sharing in your experience.

  8. Hi Ashtyn!
    My name is Annie Lewis. I’m a mommy of 4 kids, one of whom is exactly your same age (he’s really cute by the way: ). A few weeks ago, my dad and my little brother were both diagnosed with cancer. It’s been very very hard, as I’m sure you can understand in a way that most people can not. Just tonight, my dad somehow came across your website and sent me the link. As I read the words your cute mom has written and saw all your adorable pictures, I knew I had to leave you a message. What an amazing person you are. I know this is all kind of new (it is for my family too), but I would venture to guess that you are going to touch many people’s lives with your story, and with your trust in our Heavenly Father’s plan. Your strength is contagious. Please know that my family and I will be keeping you in our prayers both morning and night. My dad and my brother are being treated at the Huntsman Cancer Institute, so they’ll be sending you their happy vibes from right around the corner! Keep up the good fight you cute girl.

    -Annie

  9. Okay… I am reading everything that people say and what your mom posts everyday. At my school, I am learning about Similes, and I have been brainstorming on what to say about you. One that I thought about was Ashtyn (you) is as beautiful as a flower in the spring. Ashtyn is like a lion, it is very courageous and it always up to fight anything thy comes in its way. There are about one thousand more that I would say. I love you like a sister!! I say that all the time noe for a reason. I still wish you the best and I will keep praying. Love you!! Hang in there!!!! Hair or no hair, you are beautiful!!!!!!

  10. Suzanne, thank you for taking the time to post so often and updating us on how Ashtyn is doing and sharing what you are experiencing and learning. Your whole family is such an example to us all. When Morgan was with us on our little ski trip in Ogden she taught an invaluable lesson to Sienna and to myself. It was late and the girls were still up talking and playing cards. I went in and told them it was time to turn the lights out and go to bed. After we got home from our trip the following night, I was saying goodnight to Sienna and she told me that after I had told them to turn the lights out, Morgan had gone into the bathroom and read her scriptures and wrote in her journal. Morgan had told Sienna that she never skips a night of reading her scriptures and that she feels so much better when she does. Sienna read her scriptures that night and it was because of the example of your sweet daughter. Thank you, Suzanne. Love to you and your family!