Today my husband left to go out of town for work. I strangely feel more alone than ever. I guess when the only person who knows what you are going through leaves, it is quite lonely. Deliver me, oh God from this loneliness. For I know you are with me (I have also come to the realization that I have GOT to start memorizing scripture for this stuff. I cannot go through this without my compass, you know?).
I did make it to church today, which was good. At the last minute, one of the elders who is aware of our situation came and asked me if I wanted to be prayed over. I want to hold onto this new information so tightly, to the point that it is against my chest and no one can see. I did want the prayers though, so I said I didn't care. It was such a surreal moment. Sitting in my chair, alone, while someone from the stage spoke about my baby, my sweet Luke, and how my sweet baby is sick. All I could do was weep. Why was he talking like that about my baby? How could it be me that he was talking about? But nonetheless, I am the guilty party. I walked onto the stage without looking at anyone or anything. I just wept. And wept. The elders laid hands on me while the pastor prayed over me and my baby. I don't even know what he said. I just wept. The only thing else I noticed was that I was not the only one weeping. In fact, there were several people that I heard weeping also. At least I was not alone.
I am also exhausted. To the point that I could barely stay awake during church and I fell asleep sitting at the lunch table at my parents' house. I need to go to bed, but it is so hard to voluntarily do so. Maybe tonight I will actually rest. The whole house is a wreck because we have been so overwhelmed that we have not done the best at picking up after ourselves. But I don't care right now. I just want to sleep. Maybe anyways...
I still feel solid in the Lord. I know it is Him who ordained this and Him who is in control of it all. I know He does not give us more than we can handle (I need to memorize that one too). So I am putting every egg I own in His basket. It is amazing how when something like this happens, we so easily will give up our eggs. We remember, oh yeah, sorry God, these are not our eggs anyways... oops my bad. I think it is a great reminder for sure. It is just a very shocking reminder indeed.
Tomorrow I am going to call the Tuberous Sclerosis Complex Clinic at the Children's Hospital here. I really hope we get to meet with them soon. I would love to chat with them this week. I am also needing to schedule more appointments, because we are wanting to re-evaluate our care team. The medical system is so hard to navigate through. How does one choose a doctor? Most of the time I feel like proximity to home is the biggest factor in how one chooses a medical provider. In this case, that is definitely not even a factor. We need people who are experienced in how to handle this situation. Someone who will coordinate all the care we are going to need. Someone who will take care of my Luke as I would take care of him. A diamond in the rough. I am praying for that provider.
Bed is calling once again. Just some thoughts from day 3.