When I hear the phrase "living in the moment", my mind jumps to thoughts of living freely - in the moment - being carefree, living for the now. Now, however, when I think of "living in the moment", it's literally living in this moment because this moment is all I can handle right now. Right now. Not a couple hours from now. Not tomorrow. Certainly not next week or next month. Now.
Since Peyton passed away on May 4th, life has been a blur. There was a flurry of activities surrounding taking care of what had to be taken care of and planning for her memorial service. Most visitors left the following day. We had a few more days before we were on our own as a family of three. Three. That number still doesn't sit right with me.
Ron was off work through this past weekend. It made a huge difference to have him here. Moira had gone back to school the week after the memorial service, so it was just the two of us for a little bit each day while she was at school. We were able to take care of some things and just "be".
As the calm descended on our home, so did the stark realization that we are not four, but three in this house. There is no home nurse here twelve hours each day. It is so strange to be upstairs with no one at all downstairs in the bedroom which was Peyton's. When we leave our house, we have to lock up because there's no one staying behind - no nurse; no Peyton. When we get into our vehicle, there's no huge but comfy looking special needs car seat in the back, but plenty of space to seat a couple extra people if needed. When we return home from being out, there's no nurse to say hello to and tell us how Peyton did while we were out - because there is no Peyton there. Just a great empty feeling in our home and in my heart.
While we still had visitors here, I became hyper-sensitive about things. I new I had developed a sense of what my limit would be each day. There is a limit on things I can tolerate each day. What can I tolerate? Church is good. Being with my family is good. Spending some time with friends is good. But there are things which I don't want to hear about or talk about. There are situations I don't want to be in. There is a limit. And it changes. I'm sure that might be a bit frustrating for others since I can't necessarily say from one day to the next what it's going to be!
Peyton would have been seven on the 15th. Ron's birthday was the 17th, so friends of ours invited us to come over to their place for dinner, cake and just to celebrate both birthdays which I thought was very thoughtful and it meant so much to me that they would think to honor Peyton's birthday for us.
The past few days or so have gotten more difficult for me. As the day to day "calm" sets in, so does the reality that this new life we are in is it. Three of us. The ache in my heart grows each day. I miss Peyton so much. I know she is fully healed and is rejoicing in Heaven with Jesus and with her family that has gone on before her and I would never want her back on this side of Heaven just knowing that she can walk, talk, run, see, hear, dance, and so on. I would never want her back here if it meant giving that up to return to a life of illness, disability, pain, and so on. I trust in God that He is taking wonderful care of my little girl, but I just miss her terribly.
As I go about my day and think of what all we had to do for her {nurses and/or myself}, it is amazing at the time that has suddenly been freed up. I don't say that as if to suggest any time spent caring for her was a burden - I would do it all over again if I had to. But there's these vast spaces of time in our day where there's just nothing. No breathing treatments. No play time. No diaper changes. No tube feeds. Nothing.
And my calendar? Well, it's about as bare as it's ever been. There's still the odd previously scheduled appointment that makes an appearance and I look at it and think, well, I guess we won't be going there today. But it's funny. As big of a deal as it was to get Peyton ready to go to an appointment - even if it was by medical transport {ambulance} once - I miss it. My life revolved around Peyton and her medical issues. The vast majority of people I knew, outside of church friends and a couple non-church friends, were doctors and nurses. I said to Ron today it's like someone threw up a restraining order and I'm just cut off now. Even if I didn't see these people outside the walls of MUSC {although one of her doctors does attend our church}, they were still people I interacted with. Maybe it's odd to say I miss all those doctors and nurses - but I do. And the home nurses. How could I not miss people who were with me twelve hours a day?!?! {Note: if anyone reading this does fall into one of these categories...feel free to contact me - there's a few options over there on the right sidebar --->>>}
So, for now, as I go through each day, I find myself more sad more often. I rejoice in her healing, but the loss is palpable. I cry a lot. I got 15 minutes of sleep last night. Yes, you read that right. Minutes. I find that I must occupy my mind in some way or else my mind drifts quickly to thoughts of Peyton and how she was before the hospitalization; how she was during that hospitalization; and how she passed from this life. If I try to sleep, my mind goes right there and I break down. That's how I've been doing the last couple days.
I so appreciate the love and support we have received from everyone during this time. It has helped tremendously. It is incredible to see how Peyton impacted so many people in such a short life. Please keep us in your prayers as we deal with the grief of our loss, each of us dealing with it in our own unique way.
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