Tuesday. 6 days since our world turned upside down. 6 days and we have heard nothing from our oncologist. Nothing. 6 days of trying to be brave. 6 days of trying to convince my little family that everything is going to be okay.
Last night, I didn't get to bed until almost 2am. Trying so hard, with little success to work and even get caught up on work but that didn't exactly happen. When I decided to abandon the notion of being creative or productive, I laid in bed with my head in chaos over what to do with Shelbie and how to help Little Bear.
I have seriously never felt so committed to anyone in my life as I have been to Little Bear. We completely transformed Spencer's bedroom to a teenage girl's room. I have done everything I knew how to do to make her feel welcome and loved, knowing full well, that this must be the hardest thing in the world for her too. Sam and Shelbie have included her in every one of their activities and never noticed the little things she struggles with. They just gave her total acceptance. I just feel badly that she doesn't want to be with us. I know the past couple of days, it's been harder to drop my life for her but that doesn't change the fact that I care a great deal about her spirit and what will happen to her when she leaves us next week. I feel a deep sadness.
Anyways, at 5:15am, I was wide awake. I let out an audible groan of frustration and exhaustion that even the dog sat up and looked at me, wondering why I was up at such an early hour. The spirit obviously had other plans for my day. I knew I needed to be in the Temple. I got up and got ready and spent a few hours there. It was exactly where I needed to be.
As I sat in the Celestial room, the scriptures fell open and therein, were words of comfort. My daily bread. The map for moving through this trial.
Behold, you have had many afflictions because of your family; nevertheless, I will bless you and your family, yea, your little ones; and the day cometh that they will believe and know the truth and be one with you in my church.
Therefore, thrust in your sickle with all your soul, and your sins are forgiven you, and you shall be laden with sheaves upon your back, for the laborer is worthy of his hire. Wherefore, your family shall live.
I don't know when we will get an appointment to see an Oncologist. I don't even have a clue where that doctor will be or who it will be. I do know, that if I am patient, it will become clear and I will know where Heavenly Father wants his sweet daughter. In the meantime, I have a job to do. I am the physician of my children's spirit. We will remain faithful and steadfast and we will prepare together for whatever it is the future holds.
Shelbie is not doing well today. Neither is Little Bear for that matter. But Shelbie is struggling with anxiety as you can imagine. I need to get work done in the worst way but I need to keep her mind busy as well. She had photo shoot this morning and when I got home, I took the girls up to the college to read for 1/2 hour for the blind. It was part of my 29 gifts project. We were each put in a recording studio and we just read the newspaper for 30min. They then become part of a radio broadcast that blind people are able to listen to. I loved it, the girls...not so much. It did help Shelbie though. A little.
When we got home, she had a good little cry and I told her I had read a great scripture in the temple. She said, "So, do you think I'm going to die? Did you get the impression that I'm going to die?"
I got the impression that she is going to be okay but that we have to be patient. We have to let the timing of God unfold for us instead of trying to steer the river. She seemed to calm down and is resting now until her next photo shoot later today.
This morning, I felt the weight of my responsibility as a mother. I felt a distinct feeling and reminder that Shelbie is not mine but HIS. The decisions for her life and treatment are not mine to make, they are God's. I am only here as the one entrusted to care for her and love her. I am a partner with God. I covenanted with him to nurture her and teach her and journey with her here until we both make it home to Him. It was almost as if the purpose to Little Bear coming, was to teach me that concept. She isn't mine, she has a mother. I can do all I can to love and care for her but she belongs to someone else. Ultimately, her mother has the final say for where she goes to school, where she lives, what she does...
I did hear back from National Institute of Health this afternoon. The nurse I have been working with there, over the past two decades, has forwarded Shelbie's records to the TOP DC doc in North America, Dr. Savage and her Clinical Physician Dr. Giri. She may have a slight edge over Dr. Shimamura just because she can focus a little more just on DC. I should hear back from them in the next couple of days.
Dr. Shimamura will call either today or tomorrow. I have total and complete trust in each of these doctors. I will wait and hear what they each have to say and we will watch this plan begin to unfold.
In the meantime...I will work to buoy up their spirits but as hopeful and promising as that sounds, I would be completely misleading you if I didn't clarify that there is a strong current of grief and sorrow with a heavy weight of anxiety dragging out behind me and I question if I have what I need to make this happen. I don't feel strong or brave.
Sometimes, I think if I were to write a book about my life, it would be called, The Rise and Fall. There are times and seasons when we hav...
Some time ago, I was reading about the Japanese Internment Camps and specifically Manzanar. I became intrigued with one part of that story....
I'm back. I had to retreat from my life for a couple of weeks. We've been struggling and things have been really hard. I had no ...
Taking care of loved ones with chronic and rare conditions is harder than I ever imagined it could be and each appointment we go to, seems t...