Monday's Muse

When you are constantly suctioning mucus out of the back of your daughter's throat it makes it very difficult to take time to cuddle with her. It is practically difficult because you need two hands to suction and two arms to hold; since hands are connected to arms you could see the difficulty.
The other issue is that she requires so much in these moments that every other moment I need to be doing something to keep the rest of the family afloat. Unfortunately, cuddling because low on my "to do list." I am a task person so this list is important to me...many times too important. There is also the issue of cuddling with someone who has oxygen tube on her face, feeding tube in her belly, drain tube in her belly, on top of the suction. It is cumbersome and annoying.

A side effect of all of this is it also interferes with my time with Ryder and Rylee. Really it is the same issues. Practically it is difficult because you are constantly jumping up to suction. You need two arms to cuddle a big kid too and it still takes two hands to suction. My to do list and task driven personality interfere with my deep desire to hold my kids (which they both still want everyday even though Ryder is 11! Yea!)

So last night I put it on my "to do list." Ryder and Brian went to St Louis for the afternoon and evening. It was Sunday...I try to do the least amount I can on Sunday because it honors God and reminds me He rested too! Rylee had her friend Danielle over to play for a few hours so I could spend time with Regan. So we sat. I unhooked her feeding tube...no oxygen...no need to suction...no time limit because she didn't need any breathing treatments. My arms and hands were free and my to do list was being checked off because I got to spend a great two hours holding my baby girl. We talked to Nana (my mom) on the phone. Regan likes to talk to her on the phone because she has a great voice...she is excited to hear her and almost always responds. When I hold Regan I remember how much I liked to cuddle. I still do.

At 9pm Rylee's friend left and then Rylee and I reset the house, got Regan in bed, got our jammies on and then snuggled in my bed. Rylee loves to snuggle in my bed. I understand because I am almost 35 but laying in bed with my mom is one of my favorite places. It sounds weird I know but it Shalom to me. She and I love to talk so we just go on and on. Rylee and I are the same. Last night we mostly read. She read "Honestly Malory!" and I read "Cold Tangerine's." We laughed when we turned pages at the exact same time. We had our legs all knotted up together. Regan was in her bed listening to Josh Groben. We read for an hour. Then she said, as she laid her book down, I want to rest. She snuggled in close and read my book with me. She said, "Is this book about her life." Yes I replied...."like a blog in print." She wished there were pictures. I read for another thirty minutes. Then I just looked at her. She is a beautiful girl. She is growing up. I love it and hate it all at the same time. I wondered if when she is 35 if she will still want moments like this. I know I will.

ps thanks for the prayers about the seizures...none all day yesterday!