I am in my bedroom. It is 4 p.m. Chandler (14) is sitting on my carpet playing his acoustic guitar teaching himself to play by ear “No Surprises” by Radio Head. He has no homework tonight and will be heading to the gym in 30 minutes. Ashtyn is laying in my bed thinking about what she wants to order at Olive Garden to-go for Friday night. She also talked Chandler into letting her borrow one of his guitars so she can learn to play. Then she asked out of the blue, “Chandler, are you afraid to be the bone marrow donor?” He simply responded “no” and continued playing his guitar. Ethan (6) is running around playing and will be heading to swim lessons in an hour. Morgan (10) went to piano lessons after school and will be home soon. Tonight, for the nineth night in a row, I will be able to kiss each of my kids goodnight. Life seems almost normal, for a moment.
Being home has been rejuvenating for both Ashtyn and me. As we look ahead to the road that is before us, we must prepare our mind, heart, and bodies as best we can. Ashtyn’s body needs rest and a lot of it. So she sleeps, lays in bed, and sits on the couch. Though her body rests often, her mind is constantly busy. She thinks about going back to the hospital and wonders what she will do differently. She wonders about the bone marrow transplant and how sick she is going to be. She is preparing herself mentally to go back to the hospital and do whatever it takes to finish the fight.
I am preparing as well. I need to be strong for her. This week has built me up so that I can be physically, mentally, and emotionally ready to stand beside Ashtyn with stability and strength. Saturday morning Chandler and I went out to breakfast, just he and I. We then went to Ethan’s soccer game. In the afternoon, I took Ethan to Chuck E Cheese for a mommy/son activity. Afterwards I met my kids at Scheels and bought a trampoline and basketball hoop for fun summer activities. Sunday I went to my own church congregation for the first time in 11 weeks. I had the opportunity to teach the lesson for the women in Relief Society. The topic was “Faithfulness in Times of Trial.” Perfect! One of my favorite things to talk about! Monday I went to the gym (XCEL Fitness) to visit with friends and go to Body Pump, a total body weight lifting class. I have been so sore ever since. Tuesday, I went to a 19 year old girl’s house and joined her family as she was given a blessing before leaving on an 18 month LDS mission to Seoul Korea. I was her youth church leader a few years ago and was honored to be there. Wednesday, with extremely sore legs, I did a 60 minute spin class at XCEL and got my heart rate higher than it has been in almost 3 months. I was also able to talk to gym members who have become what I call “my XCEL family.” I have been built up by the interactions I have had this week with friends, neighbors, family, and all I come in contact with who support Ashtyn.
Ashtyn is never left home alone. If I’m not home, Jason comes over to assist with whatever she needs. There has been a noticeable difference in her energy, endurance, and spirit in the last eight days of being home. She went from not being able to walk without assistance to freely walking around without a problem. She went from staying in my bed constantly to being able to socialize in the family room. She went from sleeping most of the time to staying awake most of today. She talks, laughs, makes jokes, teases people, and smiles. She has had a nurse come do blood work to check her white blood cell and red blood cell production. Since leaving the hospital there has been minimal cell production. Her ANC is still 400 and is not allowed to go to public places. Normally kids with an ANC less than 500 are hospitalized. Her WBC count, hematocrit, and every other “count” is low. The good news is, she isn’t sick at all. Her C-diff follow-up test came back negative and she appears to be infection and inflammation free. That’s what matters.
A few days ago Landon, the founder of miles2give.org, and his running teammates Ryan and John, called me and asked if they could visit with us Wednesday to give Ashtyn something. I invited them over as long as they told me what they wanted for dinner. Their request was a Southern home-cooked meal. That’s funny because anyone who knows me knows I don’t cook anything that takes more than 30 minutes. But I was up for the challenge. We had baked chicken, mashed potatoes, gravy, corn, green bean casserole, corn bread, brown rice, and dessert from Costco. I wouldn’t say I cooked anywhere near as good as what they would get in the south, but they were polite and ate it anyway. Ashtyn stayed in bed all day to make sure she would have the energy to eat at the table with everyone. Prior to this, she had eaten every meal in bed.
At 6:30 p.m. Ashtyn played the piano while waiting for their arrival. She played the piano! So cool! Up to this point even sitting on the couch took too much energy so it was great to see her sitting at the piano. When they walked in my house hugs were exchanged as if we were close family. We sat at the dinner table, Ashtyn said a blessing on the food, and we ate. I wish you could have been there to feel the warm, positive spirit those men brought into our home. Love radiates from them because they sacrifice each moment of each day serving and inspiring others. As they run from San Francisco California to Ocean City Maryland, every day is dedicated not only to running miles and raising money for cancer research but also to spreading love and inspiration. After dinner they had Ashtyn sit on the couch while they presented her with different containers of sand from beaches around the world. When they visited her in the hospital Easter weekend, Landon found out that Ashtyn loves the beach. He asked his supporters to send sand from beaches around the world for Ashtyn. Her collection will grow and in the future she too will be able to contribute sand from beaches she’ll one day visit. I am going to buy a spice rack and put sand in each container labeling it with what beach the sand came from. Who knows how many spice racks she’ll be able to fill? Landon, Ryan, and John stayed for three hours chatting, playing with the kids, and bringing a great deal of positive energy and love that rejuvenated us all. What special men. They left their phone numbers for Ashtyn to text any time, and they meant it.
Normal, for a moment.
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