A Mommy Blog About Raising Men, Not Boys.
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Monday, August 31, 2015

Like Tears From A Star

We had planned a day out on Sunday. We thought that perhaps some time in the park, fresh air and such, would be a welcome diversion from the oppressive stress that's been hovering over us.
However upon reviewing the weather it became apparent that the remnants of Hurricane Erica or whatever it was named was bearing down on us.

The kids got me up early and I realized shortly after breakfast - WE HAD TIME.
So at 9:30 am we piled outside for frisbee and soccer and running around and squealing (sorry neighbors) while the storm clouds loomed in the west and south. It was short lived, but welcome, and as the rain began to fall we had to retreat to the safety of the porch.
I brought out the requisite coffee and a copy of Garden & Gun and watched the rain roll in. Having seen proper hurricanes a'plenty this wasn't much of a "to do" to me. Remnants of a has been storm, at best.
I sat and texted with my brother about the state of our mother. Fading, not great was the report. I got to talk to her, but it wasn't much of a conversation. I told her I loved her. She told me she was having trouble talking.

I realized I might never actually talk to my mom again. That is really one of the most unnatural things I have ever considered in my life.

More distraction was required.

When the rain let up and the sun came up we did head to the park to take to the trails through the woods.


We followed the family tradition of hunting for mushrooms, a photo safari - our tradition from when we first moved here.
The red one is the winner, obviously. Even kids who don't want to go walking through the woods find occupation in this game, I'm not sure why. Finding the most interesting mushrooms is always a challenge.
Given the stress level here, I can't imagine what it is at my brother's house, where it's ground zero for our impending family loss. Maybe they're handling it better as they are there. Or maybe I just can't tell because I am so damned self absorbed and selfish right now it's difficult for me to know which way is up, and they too are falling apart as much as I am.

I don't know.

I just know that we played outside in the fresh air, and time passed and it was good. I don't know if I need time to speed up or slow down right now. I just know that it's not my friend, and I feel suffocated by it.

Saturday, August 29, 2015

Rooms of Forgiveness

Last night for the first night in days I slept hard. I felt drugged but was not. My husband tried to wake me up about a weird smell, but if I HAD to converse about this smell or had there been a fire I could not have done so.
I was wiped out. Mentally, emotionally, and physically empty from the past few days. I haven't been a good wife, good friend, good employee or good mother in days. I've phoned it in, I've paid attention to the things that were must do and the rest were simply done on autopilot.
At around 6 am yesterday I looked at my phone, glowing beside me with a message. It was my brother. Mom had fallen, 911 had been called and he was five hours away.

That meant my sister in law had three kids to get to school and one mother in law to see to at the hospital. That meant my mother was possibly hurt, or in worse shape than she had been before.

It turned out to be the latter.

I have known for a year that my mother was terminally ill but I had been holding out hope for the miracle of transplant. Even when she didn't want it, I held it as a candle in the darkness of the prospect of a world without my mother. When that hope died, part of me went with it. I didn't know how strongly I was leaning on it until it was gone and then I was lost.

Yesterday she went to the hospital for the visit that wasn't going to end. Hospice was discussed at length until my brother (having hauled ass to get there) was brain weary and mentally beaten. End of Life rules in terms of insurance are tricky and scary things. There are rules for the ending of life, and apparently you don't have to like them.

Mom said no to dialysis when they said she should have some of that. She's done. She doesn't want anything, she wants to go now. Maybe she doesn't want to go so much as she just doesn't want THIS anymore and there isn't anything on Earth left for her EXCEPT this.

After much stress it was arranged that she would actually go to the same facility where Dad is, which is a blessing and a curse. Dad's dementia being what it is, we just weren't sure he could handle it. But it was our only option and part of me was glad they could be together. As crazy as he drove her for 46 years, I hoped that despite that they would find some comfort being together.

Matt did the much dreaded duty of talking to Dad, and telling him what was going on. And then Mom was moved in to be with him - different room but Dad can be there with her.

Somehow in the course of my day yesterday I stopped being mad. Maybe that's not it. Because I AM STILL MAD AS HELL. And I'm soul crushingly sad. But I am not so mad at all the medication that probably caused this. I'm not so mad that none of us realized "fatty liver disease" was going to cause her hell on Earth and that we could've done so much more early if only we had known. We didn't know. I'm not so mad at my Dad for feeding her only fast food when she got too weak to cook for him, the worst possible thing for her to eat with her condition. I'm not so mad at myself for not being there enough. I don't know if I forgive, or if my mad just faded because it's pointless.

Bad things happen to good people. Good things happen to bad people. The universe doesn't play favorites.

I got to talk to both of my parents today. Mom was a little incoherent because of all the stuff building up - end of life with liver failure isn't a coherent place. Yesterday she was seeing cowboys with white hats. I figure that was Gene Autry or Roy Rogers - her favorites. She was also seeing cats. Dad was very nonverbal, a few words. I know that stoic version of my dad, he can't handle what's happening so he has nothing to say.

Today my family got to celebrate my niece's birthday, a bright happy spot in a week that has been anything but. I was glad to see so many smiles on Facebook, so much joy taking place in a house that hasn't been that joyful lately.

I slept in, and woke feeling calm. I didn't wake up and grab my phone in a panic. I guess maybe this is acceptance. I don't accept it, I want to throat punch someone. But maybe, just maybe, moving past the point where you feel like you can't breathe and every single part of your life is burning to the ground, is where acceptance is.

Maybe that's what they mean, it's just the place where you can deal with it in your way.

I don't know what my is yet. I guess I'll find out.

This is about 5 or 6 years ago my Aunt Suzie with my Mom.
Yes, it was Christmas.

Thursday, August 27, 2015

On Any Other Day

Saturday started out with a trip to the Farmer's Market with my Sister in Law.  It was a little weird, this tiny little hamlet that I grew up in, that I couldn't wait to get away from my entire childhood has grown into this interesting little place with lots to make it not only palatable - but actually enjoyable.

She bought me a raspberry tea that was fresh and amazing. I bought some cake balls that were equally amazing. I got mom a carrot cake one that she never felt well enough to eat while I was there. 

It's weird how when someone you love is deathly ill, you can still go out and do things like the world isn't ending. Mom was really looking forward to some Cinnamon twist things, she grinned and licked her lips like a little kids when she was promised them. We acquired those, and eggs, and treats for the kids before we left. 

Back home Mom was still Mom. Not well at all. But my Aunts came and visited and we all sat and told stories and laughed for a long while. Mom talked about her funeral with them, just casually, like she was talking about a gathering she was planning. Well, I guess that is exactly what it is. She made sure they also knew that she wants Spirit in the Sky played loudly, and everyone has to sing. Matt and I laughed about how that song has been ruined for us forever. Mom got worn out very easily by so much talking, and we decided to go out for a couple of hours to let her sleep.

The Beer and Bluegrass festival was going on in downtown Franklin so Matt & I took the girls and met up with the Aunties. 
The town I grew up in was uptight. We didn't walk around downtown and drink beer. In fact, you didn't drink in bars downtown. You joined private clubs and drank there so you didn't have to drink with the Riff Raff.  Listening to music while trying new to me beers from various beer trucks on the courthouse square was both surreal and a sort of amazingly therapeutic. I was home, in a home that never was, and I was with lots of people I love. There was music and beer and for a while nobody was sick, it was just a small town full of people who's last names I know and quietly judge them for.

Sorry I can't help that - that habit was bred into my bones.

My mom wasn't great when we got back. Too tired, drifting when we talked, hands bouncing - a sign of ammonia building up due to her stupid liver not doing it's job. 

You had one job, liver. You asshole.

I laid down in bed and surfed the net and thought about the fact that despite the reality that I wanted to go home, I also never wanted to leave. I wanted to go into Mom's room and talk nonstop. I was sorry I moved away. I missed so many years. I should've been there, with my parents as they aged. 

Except that isn't who they raised me to be. 

When I was 7 my mom nearly died giving birth to my sister, who did die during delivery. My mom says that while she was bleeding out, and they were hanging more and more blood trying to save her, she looked over in the corner of the delivery room - knowing her baby was dead, thinking she was about to die, and she saw my grandfather standing there in the corner.

She said she wasn't scared, she wasn't even worried. She said she knew I was strong and smart, and that I would be just fine. She said she wasn't sad that the baby was dead because she believed Grandpa would take the baby and that if she died she'd go with them and it would all be ok.

She didn't die, but she truly looked like she was nearly dead when next I saw her two weeks later. 

It seems wrong to consider that it's only been 39 years since that happened. Almost exactly 36 years, as it was August 16th - they day she almost died. I can't get my mind around the idea that my mom is going to die soon, and she only lived another 39 years from the day she almost bled to death. Is 39 years a long time in those terms or not? I don't know. It seems too small to me. 

I didn't take any pictures of my mom or my dad when I was home, which seems weird if you know me. But I don't want to remember them declining and dying. I want to remember them full of life - my parents who weren't being betrayed by biology.

But I have probably one of the last great pictures my mom took before her illness took such a grave toll on her, and even then she wasn't well at all.

It was last year in September that we rushed home, because my mom's condition had become so serious. 

I feel like I wasn't prepared for what serious is. 

Now we're in it. I'm still not prepared.





Tuesday, August 25, 2015

Beneath An Angry Star

Visiting my dad this past weekend was surreal. I knew what to expect. He's in the part of the nursing home where the people are most invalid. It stinks. It reeks of poop and pee, and other non-descript yuck no matter how much air freshener they try to spray. There is moaning and indistinct sounds of pain and suffering.

What can be hard to quite fathom is that those things are coming from your dad.

Matt said it would be the worst part of my trip home. I'm not sure if visiting dad was the worst, it was the hardest in ways I didn't expect. I wasn't prepared for the bewildered but somehow also expressionless look on his face that either stroke or dementia had created. Being there in person was in many ways exactly like being on the phone. We talked about the kids. I said lots of cheery, positive things.

Then his mind took a turn. He told us he couldn't wait to show us Aunt Ruth's farm. We both said yes we'd like that.

Aunt Ruth's farm, the mecca of my childhood tales, was the best place in the world. They had an orchard and cows and chickens. There was a fruit cellar. Bread was baked. Everyone worked hard. They rose with the sun and went to bed with the sun. On Sunday Night they listened to old timey gospel on the radio. There were small metal heaters that were put into the bedrooms when it was cold. It was a place of Rockwellian perfection, with a wrought iron fence out in front of it. Peace and plenty were in great supply there, and Dad wants to take us there.

He doesn't recall that I've been there. The white clapboard house that needed painted, the three trees that don't quite constitute an orchard I don't think, the scraggly front yard, all of these things were a great surprise to me as a child. The fence was leaning and in disrepair.

There is a great secret about Aunt Ruth's farm, however. A reason it is so magical to him that I didn't divine until I was an adult, having listened to tales from Aunt Ruth's farm for my entire life.

My father was a child born to a teenager and a young man shipping out to war. Unwanted doesn't cover it. My grandmother actually left the hospital WITHOUT HIM when he was born. My great aunt had to go back and get the baby. The way the stories go, my great aunt actually took care of him as a small baby.

My grandparents would dump him off starting when he was a toddler at Aunt Ruth's farm, for months at a time. When he entered school he'd spend whole summers there. It was a place where no one drank nor smoked. He was cared for, fed well and most importantly - he was loved. He was safe and they loved having him there. My spinster great-great aunt Ruth, who was never allowed to marry, and her brothers lived together. One worked in town and the rest of them kept their little farm going. It was the best place he ever was growing up. In many ways it's a tragedy they didn't just leave him there. He probably would have had a much better life all around.

It's no surprise then, as his mind makes it slow and painful exit, that it wanders back to his happiest place. A place where there is no pain, and he's free and loved.

When I left him for the last time, after reminding him repeatedly that no, I had already seen Aunt Suzie I wasn't going to miss her that evening all was well, I took his hand and promised I would be back soon. I took his hand, that was motionless due to stroke and squeezed it, and told him I loved him. He answered, "I love you more."

Now that I'm a parent, I know what he means. He looked me right in the eye when he said it, he was himself at that moment. He meant what Cersei said to Tommen, "I would burn cities to the ground for you." We never really know what I means to love someone so fiercely until we have our own children. My dad hasn't been big with the I Love You's ever.

If that's the last one I ever get, it will also stand as the best one I ever get.

Monday, August 24, 2015

Walking Back From Your House

"One foot in front of the other produces the next step. Just take one at a time and see what comes next."
That text arrived on Thursday as I sat at my desk about to depart. I was texting with a friend who was in a place so many thousand miles away that I don't know the number. I only know he is in the future, living a day I am not in yet. I told him I was frozen at my desk, that I didn't think I could handle it.

I was going home tomorrow, home to see my parents both of whom are failing in their own way. I spoke to Mom yesterday and she said the word hospice to me and then when I took a deep breath and said "Why hospice?" she played it off. We all know why hospice. But I let her convince me it wasn't like all that, because I needed that to be true.

I packed my travel backpack and shortly after my kids went to school my husband drove me to Atlanta Hartsfield airport.
When I'm upset, things around me sometimes strike me strangely. Such as we stopped to get this. A bacon shake at a good restaurant might be tasty. A maple bacon shake at the Quick Trip seems like a tragedy about to happen.

I am sure people thought I was weird taking a picture of it. I don't even care.

One foot in front of the other, occasionally snap a picture.
I didn't have enough miles yet (surprisingly) to fly home so my friend Jeff at work gave me some to go. I didn't now how important it was going to be that I go, until I was on the interstate and my brother brought me up to speed before I boarded the plane.

Mom's team of doctors have said no to the transplant. She has a heart defect that would have to be fixed first which would be open heart surgery. They don't believe she can survive that surgery much less the transplant surgery. Her liver is failing, she has a kidney failing (or both I can't even remember). My mom is dying. Whither hospice? Thus, hospice.

I cried my eyes out in a bathroom stall inside Atlanta Hartsfield, then I pulled myself together, fixed my makeup and headed toward security. I'm a pro. Shoes off, laptop out, passport open, right through the busiest airport in the world like an ace.

One foot in front of the other. Just keep walking. B gate. B16. Ride the train, two stops, then go up, turn left. Just keep walking, I told myself even though the world got heavy and sometimes seemed like I wasn't in it.
I stopped here. I have never had any desire to own a pair of BEATS by Dr Dre. I don't know what I would do with them. But had I had the money on me that moment, I would've had a pair, probably the green ones although the pink ones are pretty epic as well. Regardless, I know covet these and I don't know why. I stood there looking at them for several minutes, considering how ridiculous it was to even want them. I'm not sure these are actually the ones that are Swarovski crystal but if they are, they're about 800 bucks. Perfect.

It was a welcome few moments of distraction.

My flight to Indy did not include Biscoff cookies and frankly that's a failure on all counts. Stupid Delta, where were my cookies? WHO WANTS PRETZELS NO ONE! I had a coke and my stupid tiny pretzels. Perhaps I was meant to feel like a giant? Unsure. My friend Tim who is simply a good egg all around picked me up and drove me to the hospital to meet Matt and my mom.

Mom looked about the same, and we immediately started speaking of things at hand, in the matter of fact way that is my mom's way. She and my brother had learned that if they started hospice NOW she couldn't get any PT and she needed a little PT to help her be able to get up to go potty. Even as sick as she is, there's no reason she can't do that at this point so why would they NOT want that. She's in her right mind, she doesn't want an army to have to help her go potty. So we have all the hospice paperwork but they had decided, and I agree that while the time to bring them on deck might be coming, it hasn't arrived.

The thing is, Mom isn't going to get "sicker". This is it. this is as sick as she gets until the final turn of the wheel and this thing kills her. She has medicine to flush her ammonia and a new port for us to drain the fluid that gathers inside her due to her failing liver. Matt and I learned how to do it, it's not hard, and it changes EVERYTHING about how she feels. A little PT to grant her a tiny bit of independence and she would have a dignified close out to the journey of her life.

I don't blame her. That's such a small thing that's denied so many older people (like my Dad) due to their illness. Going to the toilet on your own is a dignity, and so I'm hoping that a few days of PT will grant her that back -it will also grant my sister in law and brother a tiny relief.

She always told me that some day when she got old she would live with me. She said she wanted a little room with a bed and a comfy chair and a TV. Matt and April have given her exactly that. I laughed a little when I saw it, they closed off their dining room and made it a special room just for her. I would have  had her live with me in a heartbeat, but her doctors are there, her world is there and only mine is here. I just feel bad that my brother and sister in law shoulder the day to day stress of this.

"I'm afraid you're going to be devastated if I don't tell you," my brother started out his text to me, to tell me that there was no hope to save our mother. He was right, he knows me well. I kept it together and managed to keep moving, keep talking, I might not have done so well had I been surprised with the reality of it all face to face.

My niece gave up her room so I could sleep there. I didn't feel tired. I felt heavy. I felt pressed on, like gravity had altered and I was fighting new rules of existence I didn't know. I laid in her bed and thought "I'll never sleep."
I was so very tired, though, I should've known that my body would take control and pull me down in to what it needed. I slept hard, the sleep of someone who's whole person needs rest.

I felt pretty good for about two minutes when I woke up, until I remembered everything.

Thursday, August 20, 2015

Fortress Around Your Heart

I went for my annual check up at the cardiologist yesterday. Above is an image of the EKG that earned me a cardiologist. March 22 of 2014 (which I just realized is my parents anniversary) I had chest pains and ended up spending a quality day in the ER with friend Dave. Since then, a lot of things have changed.

My appointment was one I actually went prepared for with lots of questions. I didn't end up having to ask a lot of them, though. I would like to come off of my blood pressure medicine, and it turns out that with a blood pressure of 104/62 he agreed it was TOO low. I've been having some dizziness after working out, and it's probably related to a too low bp. My pulse was 64 which is apparently a good thing.

He was probably more excited than I was about my weight loss. My heartbeat was actually normal yesterday - I didn't get a pic of the normal. I'm not getting my hopes up about it staying normal, as the nature of my condition is "intermittent" you know - so sometimes I will be normal. Sometimes not.

In going over my history he asked again "no heart conditions in your family" and I answered "Funny you should mention that..." and shared about Dad's saga. When I got done talking about Dad, he said "I'm so sorry to hear that. Is he going to be ok?"

No. He's not. He's not going to be ok at all. So I told him that.

He put his pen down and said, "You realize you're changing your odds right? That won't be you if you continue to change your life now, it's not too late."

That's what I'm counting on.

Wednesday, August 19, 2015

Desert Rose

I guess it was the total disrepair at the Fernbank Gardens that made me decide I should abdicate my title as hillbilly neighbor of the garden world. I have to confess, I HATE GARDENING. I don't find it fulfilling. I don't find it rewarding. I don't get a great sense of peace by creating a lovely garden. I have no great need to work with my hands in the earth.

I just want it to magically look nice all on it's own.

Funny how that doesn't actually work out at all.

When I moved in, the woman who owned the house before me cut the roses by the front steps down into near oblivion. I am guessing she took them with her. I have no green thumb and all I know about roses is what my grandmother taught me - drop coffee grounds and banana peels at their feet and leave them alone. I've done this. I learned from Kirk at work that when I get black spot to pour a beer at their feet and the earth around them - this works, I do this. But there is probably a weeding and pruning part of this that I've been uninvolved in.

Proof.
So yeah, there's a rose plant in this mess. My children came outside for popsicles and I set to work taking out anything that wasn't roses. This was tricky and I've realized that there is something very big with a very thick base growing up that I'm going to have to use some Roundup or something to kill properly as it's growing from under the porch.
I pretty much had everything not roses cleared by this time as you can see. And WOW that looks like crap. I didn't document my next step but I pulled out all the rose branches that were dead, much to my surprise that was most of them, they were brittle and just came away instantly. Who knew? I cut everything down, but now I'm thinking maybe I should cut it down more, I don't even know.

You can see that big ass thick whatever TREE thing growing out from under my porch too. I WILL find the chemical to kill you with. I can't cut it, it'll just keep growing.

So now I'm wondering, should I plant a second rose plant next to this? This looks like hell. This is a small space of yuck. Two rose plants? A trellis? They aren't really climbing roses. Or are they and I don't understand roses? UGH I don't know.  All I know if that I gave them some banana peels and some coffee grounds and it rained like hell so I hope they show me some life.

In my work, I had to get down on the ground and got an unfortunate look under my porch.
I found a dead millipede (centipede?) and a gift left behind by our snake neighbor. I haven't seen her in weeks but the fact that she left her skin is an unfortunate reminder that she's now bigger as she was big as hell when I last saw her. I guess now I know where all the bunnies went. Well, I guess the coyotes might have eaten them. Hard to say.

Circle of life.

Now, I have to sort out this gardening shit. Ugh. I wish I was domestic sometimes.

Sunday, August 16, 2015

God's Favorite Creature

We spent a much needed Saturday out of the house at the Fernbank museum. You can never have enough dinosaurs in your life, from what I can tell, and despite the fact that we've been going forever, the giants in the atrium NEVER fail to inspire awe.
Giganotosaurus is about to go for the undercarriage of Agentinosaurus in the tableau behind and above Charlie. He's not concerned. this late Cretaceous ultimate battle is frozen in time, so we don't know who won and thus we don't have to expend any grief. Also, he's been seeing these dinosaurs since he was four, so he's ok with them.
Charlie is terribly shocked by Megatherium though. Ok probably not, I think I caught him mid yawn, so he's probably a bit bored.

One of the things we do is that we don't just tell Julia and Louis about the things we see, we tell Miles and Charlie. Their receptive language is very good. Sure they don't understand how many million or thousand years something lived, but we explain it like they do. We explain everything. Sometimes in simpler terms for them (and Julia) but hey sometimes NOT.
"What's this?" he asks Miles. "Dinosaur" Miles whispers out of the corner of his mouth (that's his thing lately. "VERY GOOD" he daddy hugs him.

It IS very good. He doesn't understand that it's a cast, or how many million years ago this thing lived but he knows this footprint belongs to a dinosaur. I find that amazing.
Charlie puts his hands in, and says "HANDS". Charlie isn't as advanced as Miles and I find this to be great. He's seen this thing many times, but this time he went right over and put his hands in.

It's little things with these guys, little things that I mark as victories in their development. All progress is good.

This would be the dinosaur that made the said track. Julia and Louis are acting how they would respond to a sudden appearance of a T-Rex. Personally I question their choice and would suggest RUNNING.
Our day started out terrible. Early AM Charlie was demanding to get up very early, screaming and carrying on, he attacked Louis' foot trying to get his attention to GET UP. Miles and Charlie had a nonstop early morning fight going on. Miles kept demanding Charlie give him his cereal spoon at breakfast, then Charlie would scream and shriek because he had no spoon. I had to keep going back in and getting Charlie's spoon. Every time I returned to the kitchen to try to make my own food, once again - spoon theft occurred.

Really it was spoon bullying as Charlie was being intimidated into giving up his spoon. Why? Autism. Only Autism knows.

Getting out of the house and into distraction and activity was the key. The fighting ceased and everyone was fine all day.
Don't let the girl navigate for your ship though.
The twins like trying to do various activities even though they don't necessarily do them right. Sometimes they DO actually get them right. We did fail at brain assembly - but hey that wasn't as easy as it looked.
The girl was a different child in the play area. Five days of school transformed her into someone I didn't recognize. She immediately RAN off, into whatever she wanted to do with no regard for whether or not we were with her. Running running running, jumping, over and over, do this do that do it all run run run. I never saw this in my life.
As the museum closed we decided to go take a walk through the rose garden. There is a really beautiful rose garden on the premises and I love roses. I suck at Gardening and weeding and shit. I don't do it. So I like to admire others work. As we walked in, I saw a sign that the roses had been moved to the Governors Mansion. Oh that's nice, so now they aren't for EVERYONE anymore. Perfect.

I still wasn't prepared for the gardens.
They have let their beautiful gardens grow over.
I can't even express how much this annoyed me. Why wouldn't you plant something else?
They could do a community or school initiative and do SOMETHING here in this space rather than let it look like this. It was so upsetting to me, I just loved this small simple garden.

Oh well, they are apparently trying to grow hipsters. That's an interesting experiment.

Friday, August 14, 2015

Caught Between The Scylla and Charybdis

Lately it feels like it's a nonstop conversation about which of our parents is in the hospital, between my brother and I. Now it's Mom, again to have fluid drained out of her, again to have batteries of tests. She was weak and unwell again, so back in to the IU Med center she went. Liver failure is one hell of a thing.

My mom is trying to get on the transplant list, and I'm cautiously hopeful it can happen. When they've had her in the hospital and gotten her drained, she sounds like herself, like my mom. When she sounds like my mom, relief washes over me. Things are better. I continue to hope.

My dad though, my dad is a different story. If liver failure is one hell of a thing, dementia is it's drunk, bastard uncle. He can be belligerent. He can be childlike. He's sad a lot. He almost seems to be in a fog, I wish I knew what was in that fog with him. I'm hoping it's not despair and loneliness. I talk to him nearly daily, probably every three days is the longest stretch I ever go unless he's in the hospital. Add to it a host of medical problems of varied, nebulous nature. It's not a good combination.

Our conversations are often very short, but usually I can engage him in at least one or two real things. He likes to hear about my kids, and I tell him the simplest version of whatever we are talking about as he struggles with his attention span. He asks me about my pool. He is enamored of the fact that my brother and I both have a pool, this was always a dream of his. He asks me if I am traveling, he likes to hear about where I am. I tell him if we are doing anything special. I tell him happy things.

Today I talked to him about Mom being in the hospital, and I assured him I had JUST talked to her and she sounds great. I tell him they drained a liter off her lung and she feels much better. He agrees that this is good, but his voice is weak, distant. I ask him how he is today, and he says "I'm pretty far down." I ask if anything is going on that's wrong and he says no. I tell him I have a flight to come home next Friday and I will be coming to see him, and he says "Ok we'll see if I have time."

Ominous portent or dementia? Or both?

I'm glad I made up with my dad. Over five years ago we had a terrible confrontation. I realize now that even then, dementia was taking hold of him, as he was irrational. He had told me I was dead to him, my children weren't his grandchildren and other sundry, horrible things that no parent should ever say to their child. It was so crazy that I was terrified for my mother at that time. That was his response to being asked not to say racist stuff. That was actually the second time we'd had that SAME confrontation with him, and each time after being asked not to say racist stuff he would explode in this absolutely insane rage, exploding with hatefulness at me and kicking me out of my own family.

I forgive him because as I look back, and see how irrational it all was, I see it as steps on the path to where we are now. I forgive him because when I was little he took me to ride my Big Wheel at the college where they had huge long sidewalks. I forgive him because when I was 5 and inside the Jaycee's Haunted house, I became afraid and went and hid - and they had to shut it down and send my dad inside to fetch me - and he did & wasn't mad. I forgive him because he would go on Brownie day trips with us, and sing "Hang Down Your Head Tom Dooley" loudly in the back of the bus. I forgive him because he was the President of the PTA, and made sure we got new playground equipment. I forgive him because he punched a guy in the face who called my grandpa a crook the week after he died. I forgive him because he's the one who told me our baby died, and he's the one who told me my grandpa died, and he's the one who told me Grandma Daisy died. I forgive him because my entire life he felt bad that he didn't let me go see Shawn Cassidy when I was six like I really really really wanted to.

I forgive him because he's my dad. I forgive him because children of alcoholics accept the unacceptable,but also mostly just because he's my dad.

So I'm gonna fly home next Friday. I hope he's got time on his calendar to see me.


Thursday, August 13, 2015

Someone To Talk To

I think Charlie doesn't like that he has to share me with everyone else in the morning. The past few years Charlie has gotten up first, and he and I have had our early AM together alone, no one else had to wake up until after his bus left.

Now all three kids wake up at the same time, so Charlie has taken to getting up JUST a bit before the rest of them. I'm not sure if he's just an early riser, light sleeper, or he wants his alone minutes.

He still comes in to the bedroom where I am seated on the edge of the bed and climbs onto my lap like he's a very little boy, wrapping his arms and legs around me. He rests his head on my shoulder and almost goes limp like a baby, snuggling close.

"Good morning, Charlie," I whisper in his ear and kiss his cheek.
"HI" he answers and squeezes me. "Mwah" he makes the kiss sound near me. That's my kiss this time. "I luh you." That means he loves me.

"Do you want to go have fun at school today?" I ask him.

"Yeah," he answers.

"Then let's get dressed!" I gently nudge him off my lap.

"OKAY!" he says excitedly.

That's an extensive, and in depth conversation with my Charlie.  Charlie will answer some questions correctly very consistently. Charlie will also answer some question with "TICKLE!" so you never know what you're going to get.

But this morning, we had a talk. He always is a little bit happier when he's communicated with me. And I admit that as a mom, I'm happy when my 11 year old tells me he loves me.

Love is a hard concept to teach - not the kind of love you show, but that the love you show = that word LOVE. I do love them of course, but I wasn't ever sure they'd understand "I love you" as a concept. There are a  lot of days when you just feel like the autism zoo keeper - that you exist just to meet their demands and life requirements. It was an unspoken dream of mine, to hear them say they loved me, not as a mimic, but as something they said intentionally and with meaning.

One of the things I did for years and years was when I was cuddling them, I'd whisper "I love you, I love you SO MUCH" and squeeze them tight. I wanted them to associate that feeling, the physical cuddling with love. It felt like the best way to express it, to give them a physical association, one that was positive and snuggly and was a happy thing.

I wondered for a long time whether they would ever get it, whether "I love you" would ever be anything but some words they could say. Last week after our long, hot day at Noah's Ark we were putting on pajamas and I was recapping the day with Miles.

"Did you see animals today?" I asked.

"Animals," he answered.

"Did you see tigers?" I asked, hoping he wouldn't just repeat.

"Tigers," he answered.

I pulled his pajama shirt on over his head and held his gaze for a moment. "Miles, did you have fun today?"

At that point he smiled, kissed me and said "I love you" and squeezed me hard.

I think he gets it. I think they both get it.

And I think Miles really liked Noah's Ark.