Home front

Behind the scenes

Is Hannah, jono and Matt.

(And puppy Avi and kitty Mei Ling)

They keep the home running. I come home everyday to a cozy and clean home and orders to get fuzzy pants on. I am escorted to the lovely fort in the living room as Avi gives me too many kisses, Jono and Matt tell me about their day and Hannah is quiet. We sneak away momentarily while I get my pj’s on and I make sure she’s ok. 

She has a relaxed face. Who said it takes more muscles to be sad than to be happy?  I no longer believe it. Gravity has its way with relaxed sad faces. And there are no muscles working as far as I can see. 

She has taken on so much and when I try to take some of her load, she stands her ground and won’t let me. But I still do. 

We all have our place in this. And it is working for the moment. I am the one who reminds everyone before I leave,‘Don’t do too much. Have fun and don’t feel guilty.’  

Everyone is happy when I arrive,although at least one if not more tell of the hard day they had but I can’t tell by looking at them. The each helped, comforted, and carried more than their fair share. They take on one another’s jobs secretly to surprise each other and things like that. 

They make coming home really nice. 

Family is everything to us. We are there for one another. 

David was very tired today. He had another hour without the vent this morning, but they did not try it again today. I was there till 6:30 and most of the day he slept and rested. I told him ‘please, close your eyes when your tired. You need the rest. Remember later you will have to work hard and you need to save all your strength.’ He did not argue. Most of the day I just held his hand and stayed. 

I am getting better at lip reading. We are finding our rhythm. 

Today he asked,’How are you? Aww I made sure I heard right. A nod. 

It was a tearful day for me to begin with. Thinking about the future and how to best use the money given in a modest way to get us through many months. 

I had many things I could have told him. Or ask him. But I did not want to burden him. He need only to focus on getting better. 

I told him I missed him so much. And it’s hard without him but assured him I don’t cry every day, just sometimes. I told him I put the stick in the back door sliding glass everyday, I turn the faucets on drip when it’s below freezing, and lots of other things that he does to keep us safe and going forward. He nodded a lot and smiled. 

They never came in to do another weaning. I was glad. He was so tired and needed to rest. This week will be challenging. They will be aggressively going forward in the weaning process. There is no opportunity to close his eyes during breathing on his own because it’s hard work. 

His smile today was less crooked. And he remembered more than normal when I asked this and that, which was encouraging. 

He sings a prayer over us every night in Hebrew. 

The Lord bless you

And keep you

The Lord make his face shine upon you and be gracious to you, and give you peace. 

I have always gotten many parts wrong when he sings and when I attempt it on my own I can only remember one part very good; it has a good rhythm and sound. Everyone always laughs at me when daddy sings to us and I pipe in on the one phrase I love and know best. 

As I was leaving I told him I wanted to show him something very exciting!  I went by his bed and held his hand and sang the song almost perfect in Hebrew. I paused in a few places and then remembered but looked at him for reassurance. He nodded. 

‘See?  I can sing that song now. We are keeping your consistency and beautiful traditions alive.’  

He smiled and looked glad. But also sad that he isn’t able to do it right now. I really do want to be so careful on things I say and things best left unsaid for his healths sake. 

But I did want to pray. And the boys have been teaching me so I wanted to brag that I could finally do it in Hebrew and not just that one line I love. 

I kissed him bye. We always kiss three times. It means I love you. It’s a tradition. Since he has been awake, he puckers up his lips to say he wants a kiss.

 I comply. 

Yes. 

Three. 

His body movement does not go as fast as it used to. I had to learn his new kissing rhythm; delayed sound.

 Today, it wasn’t delayed. That was something. Right?  

It was a good day. A tearful day. A mindful ‘don’t take things for granted’ kind of day. 

I told him when he gets better I would go everywhere with him. Fishing. Coffee shop. Bookstore. Hardware store.  Computer store. Etc..  granted, these all all things he does with the boys and I am sure my desire will fade with time, but i want to make up for lost time. He smiled at my enthusiasm. 

I miss him so much...  he told me before leaving, ‘Baby Steps.’  It took a while to lip read. But when I did I said, ‘Yes!  Did the Doctor tell you that?’  He nodded. And it is true. Baby steps. And so we go, one baby step at a time.