CODAS, kinda

My kids are not technically “CODAS” (children of deaf adults) because I am not deaf, but they did grow up with CODAS and they picked up a lot of habits from them.  My son will, when ever I am on the phone, start signing to me thinking it is an acceptable interruption and that I can understand the person on the phone and him at the same time.  The problem with this is that I still translate ASL into English in my head and can’t concentrate on two voices at the same time, even if one is silent.  But it’s funny they think I can and that I won’t get annoyed by the interruption as long as it’s in ASL.

Letters to my Hobbit – 17

I joined a LDS widow group by invitation from a sister in the ward who lost her husband rather suddenly.  They were married 7 years.  We were married 6 on this Earth.  It is a good place to talk and get empathy, but it also stirs up a lot of old (I guess not really that old, only 3 months old) memories.

I have felt really, really bad about your hospital experience.  I have felt bad about the way you were cared for.  Someone asked me if it was because of your disabilities, and I have to say yes.  When someone thinks, because of your disability, that they should make decisions on your behalf because you are ‘impaired,’ and those decisions end up causing you severe pain and even death, then yes.  I have to believe that their inability to deal with you as if you were another fully functioning adult male cost you your life.

I know you hated the hospital.  You even cried.  They wouldn’t feed you because of your stomach pains, and in the end, they stuck a tube down your nose and you were constantly gagging – incredibly thirsty (because they wouldn’t give you water either) and so hungry that you said you just wanted jello so bad, and cried because you knew you wouldn’t get it.

I wish I could go back.  I wanted to give you water the Tuesday before you died, but I thought that the hospital knew what they were doing.  I wish I had given you water.  I wish things hadn’t been so bad.  If I had knew how truly bad they were, I would have fought harder, of course.  But I thought you’d come back home.  I really did.

Before your lungs collapsed, you said something about “if I die,” so you must have felt things were really going wrong by that point.  And you did die a little more than 12 hours after that.  I thought you were just being paraoid and a little pessimistic because you had been in the hospital 3 times at that point, and never got better.  Even the pain meds weren’t strong enough.

I wish I knew what really happened.  I know you went in for what the hospital called “pancreatitus,” but they treated that, toook your gall bladder out and you still had the same symptoms as you did before you went into the hospital.  I don’t think you died of an abscess due to gall bladder surgery, like the death certificate says.  I think whatever you went in for they missed, and it killed you.  I don’t know what it was, and obviously the doctors didn’t either.  Your surgeon even told me on the day you died that he had “no idea” what was wrong and that the attempt to drain the abscess revealed it wasn’t a normal abscess at all.  It might not have been an abscess from your surgery. 

I just wish things had gone better.  That your passing would have been easier.  That I wouldn’t have doubted you so much.  I wish I hadn’t got mad at you that Saturday for waking me up with vomiting.  I wish I hadn’t left on your birthday when they moved you to ICU — but they wouldn’t let me sit in the room with you.  They kept me in the dark. They didn’t say you were dying.  They said you were ‘seriously ill.’ 

I thought you’d come home, even then. If I knew you weren’t coming home, I would have stayed.  I would have demanded they let me hold your hand, or foot or SOMETHING.  I wouldn’t have left your side.

I just didn’t know…

I still say “I’m so sorry,” whenever I think about what happened at the hospital.  And I am.  Maybe you are fine with everything now, but I’m still so sorry…

Miss you.

Noelle

A look backwards

Here is a post from Sam’s (My Hobbit) blog in 2003 I thought you all would find interesting regarding his CI and how he dealt with Division of Blind Services (and this was how he dealt with many, many people especially before he became fluent again in ASL). I thought you’d find it as interesting as I found it comforting to look back and see what a great thing the CI was for him/us.

Saw my parents yesterday. My mom told me that she had called Shand’s hospital and that they are going to get back to her about the cochlear implant surgery. I’ve already set the ball in motion by going to have the MRI, and I feel like it’s almost out of my hands already. It’s not, I know. I could say, at any time, “NO, I don’t want the implant.” But I haven’t done this yet. What have I got to lose by going through the operation, my mom and other people ask… well money for one. Plus I don’t know if the operation will work or not. It’s a gamble. But my hearing has gotten so bad that I think I’m willing to try this.

At first when you get a cochlear implant, everything sounds funny. The way the audiologist in Gainesville described it, people tend to sound like they have cartoon voices at first. Then once you get adjusted to the new way of hearing, people begin to sound normal again. This takes a few months of trial and error, with adjustments to the speech synthesizer. I don’t in any way see this as some kind of miracle or answer to prayer. I’m sorry, but this is purely a technological hack, and I don’t see anything divine in it at all. But my parents act like this is supposed to be some kind of miraculous gift from heaven. Bullshit. It’s a completely manmade solution to severe deafness. I think I am going to go through with it, but I don’t have any illusions or expectations that there will be some kind of miraculous turnaround in my hearing.

My digital hearing aids drive me almost up the wall sometimes. Unlike the old analog hearing aids, whenever the battery gets low on these they start to beep in high pitched frequencies. I tell people that it sounds like R2-D2 on crack. Heh heh! But I should be (and am) grateful for these hearing aids, since they were provided for by Division of Blind Services. Sometimes I feel a little guilty for accepting assistance from the state, but I shouldn’t. I worked for plenty of years, and paid plenty of tax dollars, so I accept whatever assistance I can get with gratitude.

I went to see Sue at DBS yesterday. We talked about the possibility of supported employment. Sue and I have a unique way of talking… I talk to her, and she types in Microsoft Word at 72 point font so I can read what she’s saying. Neat arrangement. I told her I think I want to wait until after I get the cochlear implant before deciding to jump back into the workforce again. I live on Social Security right now, and I’m able to take care of myself pretty well. I’m lucky to be living where I am. The rent is only $300 per month, plus $150 for food. So that’s only $450 + the telephone and Internet bill which comes out to another $50. So I can pretty much live on about $500 per month. It’s not a luxurious lifestyle, but I’m content for now. I often wonder what I’ll do once I move from this place. I don’t want to think about it, but I suppose I should. I don’t think I’ll be living here forever.

Sly

Letters to My Hobbit 16

Sam,

Today might have been the worst day I’ve ever experienced since your death a few months ago.  So what happened is the bank wants to reclaim your last SSDI checks that were deposited erroneously.  They want this money redeposited because the Government says he died. But guess what? The bank won’t deal with me at all until I can prove that you died. So the government will get that money from the bank because the bank believes your dead, but they won’t believe your dead for me unless I bring the death cert which I STILL DON”T HAVE BECAUSE CARNES FUNERAL HOME IS A ROYAL *&$#UP house. But that’s what happens when you have to deal with a county program. You get $#*!!y service and you have to be glad for it. It isn’t that I don’t want to pay them back. I was prepared to, but I can’t do it when they want it, in FIVE DAYS. And it’s brought up all these memories about you dying, dealing with the funeral home that never ever went well, ordering a DEATH CERTIFICATE that never came, and just everything that has to do with you DYING. I cried about an hour at work. Got paid 20.00 to do it though… so I guess there’s that. I cried off and on having to take calls, thinking about how this entire thing SUCKS and how nothing about this has gone right, though I still feel blessed to have spent the last 7 months of your life with you almost 24/7. I say “I love you” much more now than I ever did when you was alive, and I told you “I love you” a lot when you were alive. I guess I do love you even more now, I hope you love me more too, but this sucks. I really just want to feel like I can emotionally handle these things, and I just can’t. I want to get to that place where these things don’t make me cry all day and for an hour straight at work. I don’t want to forget you, I just want to get to a place where it’s okay to be frustrated without feeling like I’m being pushed under water again. You grok?

And… I dropped my phone in the toilet and it stopped working so I had to get an AT&T paygo phone because it’s a holiday weekend and I wouldn’t have got a new phone by MOnday.  I’m not sure the deductible is worth it anyway.  125 for that Nokia Lumina 925, which I don’t even really like anyway…  I might just get something else for the same money.

Anyway… After all of that I went to counseling and cried some more.  I think I’ve spent most of the day crying.  I will probably have a massive headache tomorrow.

I bought chocolate.

I love you.

Noelle

Letters to My Hobbit 15

Sam,

Remember when I told you there were only 3 men who could make me cry, and you were one of them?  You know what’s ironic about that old fact?  It’s not really true anymore.  Anyone can make me cry.  All they have to do is say something and trigger some memory or something.  And you know how we were doing so well?  We hadn’t argued in months (once you accepted I wasn’t home to “babysit” you).  You make me cry almost every day now.  And we aren’t arguing at all…

 

Noelle

Letters to my Hobbit 14

Sam,

I almost had an entire week where I didn’t cry, but that was ruined today. Everytime I see your icon, and how fitting you left that icon, the first picture I ever associated with you–in fact, the blue infinity symbol on a black background most of your online friends associate you with– your icon when you left earth, I think “I love you so much” like some sort of automatic response to your presence. 

I feel torn between worrying I am making some sort of idol of you, trying to hold onto these feelings I have for you and certain that if you were alive, these feelings would be righteous. Who can guide me? Where is the line of making you a false idol and simply wanting to remember you are my husband, even now you’ve passed.

I crave someone to just talk to who doesn’t know you at all so they can get to know you through my eyes. I’m not sure why, maybe you would have said the same. I see you much more generously than you saw yourself or I see myself. Maybe that’s why I want to write your story, even if its in fantasy firm. I want people to know you like I do. I want them to love you, because then you’ll be more alive somehow. I am not sure. I just know I want that really bad…

 

missing you lots this afternoon

love

Noelle

via WordPress for Phone http://goo.gl/j6Fzhf

My Beloved Hobbit

I went to counseling on Friday.  It was good to have a place to cry and work out who I am without my Hobbit.  I haven’t been able to finish the autobiography that I have been working on, and I have felt a sense of loss at not even knowing about Sam’s childhood.  There is no one living who knows about Sam’s infancy or toddlerhood. He wasn’t adopted until he was six. But all the pictures that his biological grandmother gave him are in a book and I am using them to make him a scrapbook, because I am trying to fill those memory holes that not only I have no idea about, but Sam himself didn’t know about.  I will try to make a book, like I’ve made for most of my kids, so they can remember Sam and experience his life–the life we didn’t get to find out about with him, the past that we didn’t get to talk about with him because we didn’t have enough time.  I felt like this would help me somehow, help me fill up that hole that exists because there just wasn’t enough time to know all of Sam’s stories.

This is the first page:

heavensent

Grumbles

I don’t think you can appreciate how obvious Sam’s feelings were because he not only would grumble, not knowing who was around or in ear shot, but he would type out his grumbles when he was at the computer and just not hit enter. It didn’t matter, however, because his screen was so huge everyone in the room could read it. I had to force myself to not read or to try to pretend as if I hadn’t seen. Sam and his thoughts were literally public almost always. He was always really interested in truth and honesty, but he knew that it was important to not take everything people said at face value.  Sam was a scary guy sometimes.  He had that wandering eye that wasn’t quite able to focus on you when he looked at you, besides him being blind.  Being deaf just made it harder because he would grumble so much louder than he realized.  Everyone knew what he thought.  It was hard then at first to accept him at his word when he said things that did not agree with his grumbles. It became easier because his actions were so clear that they started to speak louder than his grumbles.  In the end, it was clear that what goes on inside our heads, those negative thoughts, all came out with Sam.  That was only clear because Sam’s actions: the little gifts of donuts for the kids, candies, flowers for me, going to church with us, going to scouts and young women-sitting in the foyer just to be with us, just for us to be family (as normal as we could be), being cheerful even when he was so tired of his disabilities… All those actions and many more made Sam’s Grumbles something we just ignored as an external version of what normally happens inside.  We still love him for all the little things he used to do for us.  Now we try to do things we think he would have volunteered for: Feeding families in need, working at the church, helping friends that helped us.