In the past I have always been one to plan. For years my Franklin Day Planner never left my side. I then converted to Google calendar downloaded to my iPhone. Each morning I had a good idea what my day had in store. Since being in the hospital I live hour by hour, not knowing how the day will go. I have no idea what I will be doing until I’m doing it. I have no problem just going with it. Today was another day totally guided by God. It was a day full of tender mercies orchestrated by Him who is in charge. I handed over this trial to God the moment I was faced with it and have been very happy to do so.
The one thing that was on the schedule: Chandler, Morgan, and Ethan were going to be at the hospital at 9:30 a.m. to get their blood drawn to find out if any are candidates to be a bone marrow donor for Ashtyn. When they got to the hospital they relayed what Morgan had told Chandler this morning when she woke up. “Chandler, I had a dream last night. I dreamt that you, me, and Ethan went to the hospital and got our blood drawn. Then they had four tubes of blood. Yours, mine, Ethan’s, and Ashtyn’s. They compared my tube with Ashtyn’s. It was not a match. They compared Ethan’s tube with Ashtyn’s. It was not a match. Then they compared yours with Ashtyn and it was a match.”
Morgan was glad that in the dream Chandler was the donor. Chandler felt excitement to be a donor. “I want to be the one to help Ashtyn. It will show that we are connected and I want to help my sister. Along with the fact that I think it would be funny to come out of anesthesia loopy like Ashtyn did and breathe the tasty air when going under.”
From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor. Chandler sometimes has an intense personality that pushes Ashtyn’s buttons. Ashtyn has a completely different dramatic personality at times that pushes Chandler’s buttons. There are moments when love is felt for one another but the majority of the time they drive each other crazy. I know that if any of my kids need to connect, it is Ashtyn and Chandler. They are 19 months apart and are now learning that their bond is much stronger than they thought. We will know in one week whether any of them are matched to be a bone marrow transplant donor for Ashtyn. Please pray during this week that one of my children will be a match.
From the time Ashtyn has been in the hospital, she has not wanted to see her siblings. Chandler is almost 14 and is allowed to come visit in her room. However, Ashtyn has said, “Tell Chandler not to take it personally but it will just make me too sad.” I completely understand what she feels. It would break her heart if she had to watch her siblings walk out the door when her entire soul wants to go with them. She misses them so much and knows that they are going home to where she so desperately wants to be. Ashtyn did not see her siblings today.
How are the other kids handling this new challenge?
CHANDLER is a boy who won’t open up easily. Even if it is clear that something is upsetting him, he will never admit that anything is wrong. Despite my plea for him to not bottle stress up, his philosophy has been “no one can do anything about it anyways, so why talk about it.” Chandler did open up to me today which I am so grateful for. This morning as we walked down the hall to get his blood drawn Chandler said, “I’m hatin it.” I asked, “What’s the most difficult thing?” He said, “You aren’t there to take care of anything.” Later in the afternoon he opened up again. “It’s hard because you aren’t around. It’s also difficult because of the repetitiveness of everyone talking about Ashtyn and cancer all the time.”
MORGAN is a strong girl who sometimes chooses to keep her emotions to herself if she feels they aren’t “good” emotions to have. For instance, if she is mad she will hide it because she doesn’t feel it is right for her to be mad. The past year I have tried to get her to always share her feelings so I can help her through them. When I saw her this morning, she reacted by crying. She misses me but misses Ashtyn terribly. “I don’t see how I will be able to leave the hospital without seeing her.”
ETHAN is a child who has never been a crier. When he is stressed, mad, has hurt feelings, or is in physical pain, he will not cry. Instead he stays quiet but his face tells everything. His eyes cry and his mouth sinks. Throughout the day it seemed like he was doing fine. At 6:30 p.m. he was supposed to go to a birthday party. When Ethan was about to leave he hugged me tightly and began to cry. His cry was audible, which is very rare. I asked him what was making him the most sad. “I miss Ashtyn.” He chose not to go to his best friends party and instead stayed home.
From all that, did you gather that I emerged from the hospital today? At 3 pm I actually got out of my PJ pants, put on jeans, ran a brush through my hair, and headed out the door into the real world. I felt like a lifeless zombie. Morgan was on a weekend retreat with a friend. Jason was spending the evening with Ashtyn. I was going to have a mother/son night with my boys. Where’s the best place to take my sports addicted sons? Scheels: the biggest sporting goods store I’ve seen. We hadn’t had a chance to go yet. Chandler was in heaven. He even told me so, several times. We checked out the BYU section, the small hockey area, walked around the store stopping to play a “bowling game”, and hit pucks at a virtual goalie. Chandler picked out a lime green BYU t-shirt for Ashtyn and a lime green bracelet made out of hockey laces for him to wear to support her.
After Scheels, we picked up Chandler’s friend Oliver and headed to my house so Chandler could watch the Ducks hockey and Jazz basketball games.
Such TENDER MERCIES were given to my family TODAY. God orchestrated a night that worked out perfectly for our needs:
CHANDLER: I was able to spend time with Chandler doing something he really enjoyed doing. He said, “Mom, I loved tonight. I haven’t had this much fun with you in a long time.” Shelley was inspired and had arranged earlier to have her son Oliver hang out with Chandler. Chandler rarely hangs out with friends. He had such a great time having Oliver over and really needed that social interaction. But that’s not all. Jason’s friend Dave was also inspired to come over, make Chandler’s favorite malts, and watch the games with him. A neighbor, Joy, dropped off pizza and crazy bread, which is one of Chandler’s favorites. It was the perfect addition to his unplanned boys night. Why did Joy bring pizza? How did Shelley know to get the boys together tonight? How did Dave know to come over? They listened to the Spirit, maybe without even realizing it.
ETHAN: I was able to spend time with Ethan holding and loving him. He didn’t feel right about going to the birthday party and I believe he made the right decision. It gave me three extra hours to give him love.
MORGAN was invited to go out of town with a really good friend Friday night to Saturday. She is then going to a slumber party with some of her aunts Saturday night. I would predict her need was to leave her worries behind for a weekend.
ASHTYN has missed her dad so much. She didn’t feel like having visitors all day and night. Little did she know that Jason was going to be with her for nine hours. She got alone time with Jason that she hasn’t had in a long time. They made her valentines box for school, talked, and watched movies together. She had a great night with her dad and was able to eat 1500 calories today … barely. “Are my taste buds always going to be like this because this Mac and Cheese tastes like crap and this Wendy’s frosty tastes like poop.” She gagged in disgust when she ate the frosty.
JASON hasn’t been able to spend any time with Ashtyn without someone else in the room. He had the same need that Ashtyn had, some one-on-one bonding time with his daughter.
ME: I didn’t realize my need to get out of the hospital. I left the hospital a zombie and came back with energy and life.
I’m back at the hospital to sleep in the bed that will be mine for a few months. I understand Ashtyn’s longing to go home and her broken heart of missing her siblings. As I walked around the house my sadness for her tugged at my heart with a deeper pain. Our home is not the same without her. There is an emptiness in her room, though it looks the same. We will do whatever it takes to get her home for good as soon as possible. Thank you for joining us in this effort. Ashtyn deserves to be home. Her family needs her there. When this trial is complete, I am excited for her to lay in her bed and smile with joy basking in the fact that she’s home.