I was so grateful for this weekend to get here. We were forced to slow down because all the doctors offices and other places of business like that were shut down. I had been on the phone with doctors, respiratory therapists, insurances companies and medical equipment suppliers nonstop for three days. I was ready for a break. I was ready for us all to be together to heal and recharge, because I knew the madness would start all over again on Monday.
We wanted to talk to the boys and see what questions they might have about what is going on with their sister. I know Grey is sad that she isn't at school right now because he loves having lunch with her each week. I can tell he really misses that. They are handling all the changes really well as far as I can tell. It's not the easiest thing in the world getting boys to talk about how they are feeling.
Dealing with insurance companies has been difficult to say the least. They don't seem to care whether or not we ever go out to eat again as a family, go to a playground, go to church or even ever go on another vacation. I have been told that they will only pay for portable oxygen (which means the oxygen we use away from the home) when we are going to doctor appointments...otherwise I guess they feel we should just stay home. Currently I have 12 hours of portable oxygen a month. Can you imagine only being able to be away from home for 12 hours every month, it's ridiculous!!
I just couldn't take dealing with all the appointments, phone calls, and messages anymore. I wanted to be with my family without interruption. My soul was so desperate to hang with these people and to try and shut out the world that we even skipped church Sunday morning...I know...gasp! Seriously, we needed to slow down and just be and that's what we did. We had a late breakfast and we sat down together and laughed, we cracked each other up.
I know they have overheard all my conversations with different folks over the past few weeks, both medical personnel and non-medical personnel and I was tired of talking and I know they are tired of hearing it. We needed to be still and take inventory. We needed to talk and share and laugh. Yes, things are different and we can all feel it, but we needed to come together...the 6 of us...so that we can go out again on Monday.
I had grand plans of some kind of Walton's family moment, where the young'uns are gathered 'round the table and the grownups share a nugget of wisdom and then everyone helps cleanup. Well, it didn't happen exactly like that because we like to laugh long and hard about bathroom humor so there's that. Then nobody wanted to help cleanup so all the dishes sat there until late afternoon, yeah not really the Walton's but completely us.
I don't want to face the world on Monday, because it hurts and it's difficult, it's not soft and understanding like home is. I haven't figured out how to get out with our girl and her oxygen yet. It's going to be harder now. She hasn't gone back to school yet either because we have to have a meeting about how her care has changed. We are having that meeting this week. They want her back in the classroom, they miss her and for that I am grateful. I was told late last week by someone that she wasn't just mine, that she belonged to everyone and so many love and care for her and our family. Those words refreshed me and fell on me with such warm emotion, it makes us not feel so alone in this.