Friday, July 31, 2015

Say Something


Last week was a disaster. Between me developing a corneal ulcer on my right eye. Which my eye doctor said could totally be brought on by stress. (HA HA!) I think that is why I pushed publish on the other post. I was carrying so my on my heart. However, I did not know that Chris was on the email list. (Hi Chris).  I hadn't posted in so long I just didn't even think about it. It is double edged sword how I felt about him reading it. Glad that he saw that this has weighed heavy on me for a long time. Sad that I put stress on him because now he has seen it in black and white where my heart and head is.  I know he is reading this too, and I am not going to censor myself. It truly helps me process to write.

I have been describing our house as a buzzing bee hive of stress. The girls, as much as we have tried to shield them, can feel it and have been acting out accordingly. Lily has been stemming HARD. Her anxiety has hit a high we haven't seen in sometime. Her fingers are raw, she is pulling her hair, and flossing, digging at her legs, pulling at her ears and very easy to tears. Normally we see one maybe two of these at a time, not several. Charlotte is hanging in there, but has been teary and clinging. I come home from work and girlfriend glues herself to me until bedtime. Last Friday we were able to get Lily into see her therapist for an emergency appointment. I will say that since then she has been maybe a smidge better. I asked her this morning before Charlotte got up how she thought the week went and she told me that she still had a lot of worries, and she is scared.

We have been honest with them that Daddy is having surgeries. We were going to show them youtube videos but, Chris watched them and yeah, nope. Too much. So we talk about it instead. Lily started asking about Chris dying. A lot. Like all day long. To which I always say, 'that's not the plan!'. Try to keep it light. But that is so hard when I want to say  'I don't know'.

We have a rough sequence of the surgeries for Chris:

The first will happen this coming Wednesday,  August 8. This is the airway dilatation and laser surgery. This is what he has had done well over 60 times. They are going to stretch out his airway. This time they are planning on keeping him overnight. Currently his is only about 10mm, ours is more like 25mm.  He struggles to breathe just doing normal things like sitting. (yes you do Chris ;-) He bought a pulse ox machine to keep an eye on his O2 levels in his blood, once after coming in from mowing the lawn it was 79. You loose brain cells in the 70's. To see it I think that was an eye opener for him.

The next will happen in late January. This is the 'one'. The one I loose sleep over. This is where he will have the bariatric sleeve surgery and they will place the trach. It is expected for him to stay in the hospital for about a week for this one.  It is just a lot to process. Our lives will change while he is trach'ed. NO way around that.

The next will be to repair his hernia. This won't happen till probably late summer 2016.

The final (if they don't do it at the hernia repair) will be to remove the trach. If they can.

Last night Chris' emotions over took him. For the first time he let himself be upset. Really upset. In 20 years I have maybe seen him cry a handful of times.  Last night he went there while we were talking after the girls were asleep.


We keep saying 6 months of hell for 60 more years.  It'll be so worth it for him to be healthy. We just feel like he has to risk SO much to get there.  The guilt that he is carrying because of that is east to see. Not that any of it is really in his control. He can't help the way he was born.

Here is some raw truth...

He doesn't sleep well.

 I haven't been sleeping well.

This past week I restarted my anti-anxiety meds.

Chris is a mess.

I asked Chris last night what he wanted me to bury him in.

The girls are a mess.

Chris told me through tears that I had to let people help me if he was gone.

I am sick with worry.

I love this man deeper then anyone could ever love another person. To loose him is something, well I can't even go there. I just can't.

We have had those talks in more detail this past week. He did give me a gift of getting the living will in order. That was a fun talk. But at least I know that I will be following his directions.

Per Lily's therapist I have been trying to the find good in every day. That is helping (so are the meds). I just need to feel as prepared as possible. Not that I will ever fully be. But all of this is so out of our control  I need to feel like I have some sort of handle on this. That is why we have had the talks we have had.

All of this has had some good.We are finding joy in the little things. Small everyday things. Like really watching the girls play. Making time for family dinners. We do laugh even with this enormous weight on us. But to say that I am not scared would be a lie.