Role reversal

Everyday, I venture off to the hospital to see David and help him to communicate and see to his needs. Ever since he woke up, things around him have been pretty fast paced. Everyone is pushing him really hard to see if he can handle the pressure. Some days he is better taken care of than others…but some other days he is not listened to or helped at all. When he talks he gets out of breath very easily. When he doesn’t have the speech valve on, we can still hear his voice but it is soft and breathless and requires full attention to catch everything he is trying to say. Some of the nurses don’t give him the time of day, nor do they try to understand what it is he is saying. They just brush him off, and he feels unsafe and not taken care of. This is why I am there almost everyday. I listen to what he is saying and make sure the nurses and doctors hear him, understand him and help him.

Yes, I am tired. The hospital is about 45 minutes from home and most days I don’t sleep very well. Sometimes I wake up in the night and wonder why he isn’t beside me…until I remember. Some days I don’t sleep at all.

Every time I come, David looks at me and says that I don’t have to come everyday. He knows I am tired. But he would do the same for me, and I remind him that we are together for better or worse. A famous Rabbi once said, “This too shall pass.”

A couple of times I have told him that I will stay home ‘tomorrow’ just to take care of home needs and to rest. But every time, tomorrow comes and I don’t want to stay home. My hunney needs me and I need him. And I go, to be with my man; to make sure all is well with him. To defend him; help him be understood; do things he is not willing to ask a nurse to do; etc...

Last Friday? One of those days. Thursday, I fought so hard to secure a POA and to make sure the new nurses know things that often get overlooked.

I may have already said, but last Tuesday or Wednesday, they did a swallow test to see if he is ready for real food.

They started with honey and he did well swallowing and being carried to the right passage. The next thing they tried was pudding. As he took a bite, they had him hooked up to make sure the food did not go into the airway. It did. And so, he is not yet ready. Another test this week sometime to try again.

However.... they gave him pudding; another milk product. He even fought for himself. A sentence that took 5 minutes for him. ‘I...am...allergic...to...dairy....and...wheat...’ but to no avail. 

So you can understand WHY I feel compelled to go daily; to make sure his needs are not overlooked. He even fought for himself. But it’s hard for him to communicate, although in his defense?  He communicates just fine, if you listen wholly and watch his lips.

And yet, once again, he was given dairy.

I now have a POA and have more of a say and can ask to see his records and such. And make sure things get noted in his chart clearly, although even that is a constant battle, fighting against the current.

‘That’s not our way. We give the next nurse on call all essential details verbally and there is no need to ‘make a note on his chart.’  Says the nurse. Hmmmm…let me think, since you have given him Dairy multiple times since he has been here…I think you do need to make a note in all caps on his chart dear…

I have gotten a little taste of what it’s like to ‘go to my job’ every day. Working hard. There is hardly any sitting on my little visits. He’ awake now and has needs.

David also went to work daily even when he did not want to go. He is the most faithful and dependable person ever. And so now I am trying to follow in his footsteps.

And Hannah stays at home and is taking care of everything on the home front.  Menus, grocery shopping, bills, nurturing and directing the little ‘ducks’ that are still in need of direction, and many, many more.

I am always so worried that I’m ruining her life. She dropped classes to be at home this semester. And sometimes I feel like things are too heavy for her.

But she assures me every week that she is right where she needs to be. She wants to be here. She is beyond her age...and that is a fact.

She has taken over my position as I have taken over Daddy’s, in a way. But daddy’s position needs more than one person to fulfill. No one person could do everything he does. He’s damn near close to perfect.

There is Matthew taking on the role of protection over us and picking up most of Daddy’s jobs around the house.

And then there’s jono, stepping up to the occasion. He is the encourager and spills over with comedy that can turn crying in to laughing faster than DC Comics ‘The Flash.’

I leave the hospital each day, worn out, but content in knowing he is ok.

And then I come ‘home.’ Where it’s warm and fuzzy. Everything clean and tidy. Everyone getting along and helping one another.

I walk in the door and am greeted by puppy, kitty, and three adoring kids glad their momma is home. And words... they each have so many words and want to tell me all about their day. I am so tired and just want to go somewhere and hide for just thirty minutes. But I don’t. I love their words and want to want to listen  and so I do. 

When Daddy used to come home from work, it looked pretty much the same way, although I would venture to say he didn’t want to hide for thirty minutes. He just totally absorbed all the words. The kids and I would actually fight to say our words and Daddy was in heaven. He is the rockstar of our family. I still remember and miss shouts of “Daddys Home!!!!” sometime around 5:30 in the evening. “Please mom, can we go help him get his stuff??!!” How can I say no?

I come home and peace envelopes me; love surrounds me. And it feels like heaven.

My children laugh at me when I come home and say, ‘I’m not going tomorrow. I need to rest.’

And then tomorrow comes and I go.

I AM tired. I know I need to care for myself in order to be of any help. I do feel like I am doing that. I am not anxious in the mornings and go slow as ever, thinking I will stay home, but as the day moves along, I go. Often times, the kids need me in the morning, because their little hearts are breaking, and they miss their daddy.

Today was one of those days...little hearts all around falling apart. I felt torn. And so... we all went. I warned them that maybe Daddy would not want them to see him. They didn’t mind. But we needed to be together today.

I dropped them at the waiting room and went on my own. I need to go first because some days are worse than others. Some days he struggles breathing and he is in so much pain. Its difficult to watch. On days when tears are already abundant, that would just make it worse.

‘The kids are in the waiting room but they know you may not be up to a visit.’ His eyes widened. ‘They can come!  I want to see them!  Just tell them I can’t talk.’  It wears him out so.

And so, I retrieve them from the waiting area and lead them to his room.

‘Give me a hug’ he says. ‘ I miss hugs.’  He has so many tubes sprouting out from him that he feels unapproachable, fearing we will accidentally pull on something that needs not to be pulled.

But he is lonely. He misses our hugs. We miss his hugs.

We just found a movie to watch, got comfortable on the bed/couch for family and watched; quietly. No words; knowing it takes everything out of him to talk. We just enjoyed one another in quietness, stealing glances at one another. A taste of home. A movie playing in the background, but I’m not sure anyone was totally invested in the movie. It was just good to be in the room with him; pure comfort and peace; quietness. It was good.  I take that back. It was so much better than good. It was a little piece of heaven. When it was time to finally leave. No one wanted to leave him there by himself. More tears as a result. But I reminded them, “This too shall pass.” And more hugs all around.

He was a little calmer today. Doc came by to check and give a pep talk. He has lately been turning away the physical terrorist...ooops, I’m sorry. I meant ‘therapists.  They work his butt off and he has a hard time breathing. Even talking works him out.

Doc said not to do that. ‘They have been ordered to progressively push you,’ he says. ‘But I can’t breathe.’ Says he.

He has hardly moved for two months. So now he is having to push himself near to the breaking point. Those muslces that haven’t been moved, the breathing that he has to relearn, even the talking muscles that were not used forever. Everything hurts like hell I know. As his lungs are so weak as well, even small movements cause him to get out of breath. But if he doesn’t push forward, he will only go backwards. The doc told all of us these words and we all knew he was right. I could tell by David’s wide eyes that he was taking every word to heart. It may sound harsh. Its hard to hear tough love sometimes, but in the end we know it is to Daddys benefit. As one of dads favorite quotes goes: “Pain is weakness leaving the body.” Dad wants to come home, and that is the mojo that keeps him working hard. Seeing all of us reminds him that he has so much to fight for. This Doctor is one of my favorites. He is very much on our side!

The other day, dad was talking to all of us and said that all he could think about is sitting on the couch with all of us…and how he was going to be able to have everybody smushing him in hugs all at the same time. So he is pushing on, for that happy memory and hopeful future.

If you desire, send cards and letters, give to the go fund me, etc.   

When he is reminded of all the love that surrounds him and how so many people care for him, he is encouraged to keep going.

My address is

1221 Dalhart Drive

Richardson, Texas

75080

I promise to let him read every one and I will put them up in his room. ;)

https://www.gofundme.com/whileyouweresleeping

Love,

Hannah and Shelli

Sharing hugs from him...

If we all work together in this community of love, he will come home faster!  And we need him back!!  We miss him so much!

Love love,

Shelli

https://www.gofundme.com/whileyouweresleeping