A New Normal

 "A New Normal" seems to be the catch phrase in society right now. For us it is an absolute. Life has changed whether we like it or not. It will take some shifting goals, desires, plans and daily routine. We are all still here in Utah for the rest of the week. I will be driving the kids back to Missouri on Sunday. Clayson flies home today to get back to work and Hannah will remain in Utah. Doug will take the first week of us being apart to be with Casey and I will fly back to Utah June 8 for 10 days. Sam is happy to get back home and open the pool. He has really struggled with all of this as well as all the children. Mom is not there for Sam and he is acting out because of it. I plan to spend all of my time with kids. We will do projects together, shop and just be together. Not much else will get accomplished but connecting with the family. It will be hard to keep all other distractions out of my life but I need to help support and heal the other kids. I have not been available for them much the last 2 and half weeks. It is their turn.

Casey has made some progress. His bolt, the wire that measured the pressure in his head, is out. He is down to minimal help with the ventilator and has gotten a tracheostomy. He has also gotten a pick line put in his stomach. The pick line feeds him directly to the stomach so there are no tubes down his nose. He is looking better having the tubes gone. His head was shaved to even out his hair as it grows and get all the glue from the EEG leads out. 

We have our strong emotional days and our not so strong days. A couple days before the trach was put in Doug and I fasted and prayed. I wanted to ask for a miracle so Casey didn't need that intervention. I wanted him to wake up enough to show he was going to progress quickly. I couldn't bring myself to actually ask for that. I didn't want to question my faith by asking something not in the Lord's plan and not receive it. I settled for asking for miracles and blessings in general. The night before the procedure I stood at the side of Casey's bed holding his hand and pled with Heavenly Father for the particular miracle that Casey would not need the trach. I promised him that if it was not his will I would still follow and believe. I promised that I would not be angry if the miracle did not come. I was truly humble in my prayer. A while later I received an answer. I didn't want to accept or believe it but I knew it was truth. The miracle was not to be ours. I said nothing to Doug or anyone else about it. I wanted to be wrong. I wanted a sign that my faith was sufficient to call down the powers of heaven and that all the other promises given to me by God and withheld for now would come forth. I wanted things to be easier for me and the family. That was not what the plan was. I struggled deeply with the answer.

The next morning Doug got up early to study and pray. He too was hoping for the miracle. He came into the room about an hour later in tears. Not happy tears but tears of sorrow and pain. He let me know he had received the answer that this would be a long journey and the miracle we hoped would not come. On the way to the hospital Doug was on the phone taking care of a broken down car back home when my phone rang. It was a doctor at the hospital. He was letting me know they were setting up for the tracheotomy. He told me the doctor had asked for it and wanted to make sure we were okay with them moving forward. I gave him permission to proceed. I felt numb. I was completely out of control and I could change nothing. I struggled with thoughts that my prayers don't work and miracles are not for me. I started to feel some anger rise. I was aware of my promise to God and prayed that my heart would be softened so I could keep that promise. I did not want to carry the burden of being angry and having no integrity. I needed God so badly even when I struggled with my faith. Maybe even more so that I was struggling with my faith. We sat in the waiting room for an hour and a half waiting for the nurse to come get us. As I sat there in a stupor not sure what to even think I prayed more. I felt a little peace come and the anger disappear. We were escorted into Casey's room and the Spirit filled me with peace. We had taken the right path and this would help in Casey's healing process.

Casey is still considered in a coma. He is opening his eyes some and will move his right arm regularly. When he opens his eyes he now he looks like he is staring into space. A few times we have had interactions spirit to spirit and we know he sees us and loves us. He knows we are here and doesn't like when we have to leave. We know he will be healed. Casey has been promised that. This will be a journey of healing spiritually and physically for him. He will understand the atonement of Jesus Christ as he struggles in his healing. This will help him see who he is and the great things the Lord has for him accomplish.

As a mom how can I pray for less than the greatest gifts God has for Casey. Can I really rob him of his eternal blessings because of my selfishness and concern for the rest of the family? Does God not know all things down to the littlest detail of our whole families lives? He knows each of us and what we need for our growth. Every member of our family will be blessed and learn through this experience if we turn to God. This very difficult experience will cause and be the catalyst to great spiritual growth. The hardest and longest challenges can be our sweetest blessings. With Gideon and Joel's deaths we saw and felt the powerful hand of God in our lives. We feel Him near just as we did then. Sometimes though I have thought death is easier than this. Death is done but this experience will last a long time. I am sure in a year I will not think or feel that. Hopefully by then we will see the great miracles that are still to come and have experienced great heights. 

What does our new normal look like? I really don't even know yet except for constant change. Doug and I will go back and forth then we will need to make more hard decisions. We could bring the family back and stay for some months or get a transport for Casey out to Missouri. Casey needs all of us for his healing including Creed, Annie and Harley but they live here in Utah. How to do all this we don't know but the Lord does and we will learn to live more closely to the revelation we receive in the moment it is needed. We have put our life in God's hands and believe me that is hard but it is the only place we can feel peace.