Oh what a day

Today has not been good. Went to the pharmacy to pick up the "special" drink for Leon to drink before his colonoscopy. After waiting for 1 1/2 hours, my number came up. To make a long story short, the nurse at the hospital never called in the prescription. Now, folks, this is the University Hospital of New Mexico and they treat ANYONE, so you can imagine the amount of people waiting there. It's a zoo.

After talking with the pharmacist herself, I called the hospital, got ahold of the proper department and asked them why they never called it in. Of course there was every excuse in the book. I told them they had 30 minutes to get that order called, otherwise I would be calling back. Thirty minutes later, I went to one of the windows and sure enough, it had not been called in.

Took my cell phone outside, (there were children in the big waiting room) and called again, this time asking for a supervisor. I was told that they had called it in "10 minutes ago", then after insisting I still wanted to speak to a supervisor, I was told by another nurse that it was called in "at least 45 minutes ago". Yea, ok.

Went back in the pharmacy and was told it had just been called in and there would be a 2 hour wait. Lovely.

By this time, Leon was getting disorientated and hungry. So, off to lunch we went. I do not like to eat out and with Leon being on a limited diet until this procedure is over, well, hard to choose from a menu. Lunch was decent and as I was pulling out to go back to the zoo that is the pharmacy, I backed into a telephone pole, damaging my car. My day would make even the most coldest heart cry, which I did all the way back to the pharmacy. My lovely car now has a busted back light and a dent on the rear passenger side. And as I drove, I was telling Leon that I was going to make those nurses at the hospital pay for the damage. Then I looked over at him and he was off somewhere in la la land. And it hit me how stupid that sounded. And he didn't even understand what I was saying anyway. Jeez, couldn't even rant with Leon anymore.

Oy vey, mi vida loca. When I got home, my beloved dog Bessie was so happy to see me so I told her all about my bad day. When I looked into her eyes, it was like she understood everything I said and just leaned against me like a hug. God, I love that dog.

Stories my Father told me

All children love to hear of the day they were born, including me. But, because of my traumatic birth, it was wonderful to hear about what a miracle God performed and let me live. Until however, at around age 8, my father told me something; something different about my traumatic birth that changed the entire course of my life.

We were having a big BBQ, there were lots of people there and the subject came up. As we were eating, my father told everyone, including me, that when I was born, the baby died so they kept the afterbirth. I can remember people laughing and my father, the ever present comic in the house, laughing with them. They all looked at me as they were laughing and I felt as if my world was crushed. There were many times after that that I was told I was the afterbirth and not a baby.

And that, my friends set the course for my life. I never felt a part of anything, I always felt different and self esteem? I had none, nothing. I felt useless, unworthy, dirty, stupid and lonely. I can remember being around my family at gatherings and feeling lonely.

I can remember being hired at Bank of America after being a Temp for 11 months. They said they were impressed with me for my hard word and willingness to learn and how they were honored to have me aboard. Me? Me? The stupid one? The failure of the family? I remember walking out of there feeling such a feeling.

Of course, that was 20 years ago, but it was a start to coming into my own.

And yes, as I have heard it over the years, my father was kidding, but.............you just don't tell a child something like that, you just don't. I cannot imagine telling my grandaughter, Olivia, who's 7, that when she was born the baby died so they kept the afterbirth.

Now that I have come into my own, I accept what he said, but it still hurts and as I sit here typing this post there are tears in my eyes and I feel like a little girl again, and my world being turned upside down and feeling so sad, so lost. That poor little lost girl, she suffered alot in her life, she was sad alot.

And today that little lost girl is crying again.

Procedure

Leon's Colonoscopy is scheduled for next Wednesday, March 2nd at 6:30 in the morning. He is scared about what they're going to find. I am just anxious to find out what it is. He was supposed to tell me when he bleeds but, never did. So I asked him the other day if he has had any more bleeds and he says, "oh yes". I reminded him he was supposed to let me know when these occur, but he looked at me like I was crazy. Well, I'm feeelin' a little crazy now.

Our Primary Dr said if it is Colon Cancer they will do nothing. It would be too invasive and complicated for what he has already. Gee, the guy can't catch a break.

It has been an ok week so far though. His memory is getting real bad, worse say, from a week ago. Man, he has gotten bad. But, I get up each day and just go with it. If he's in a good mood or not struggling so much with his memory, we laugh and joke. If he struggles and I see frustration, I put my seat belt on and prepare for the day. You just never know.

There is some preparation for this Colonoscopy. He can have nothing to eat the day before, only liquids and this stuff he has to drink. I told him he is going to have severe loose stool, be hungry and just plain feel lousy. I also warned him that he IS NOT to blame me for this. He just looked at me funny and I said, "DO YOU UNDERSTAND? THIS IS NOT MY FAULT". I now am reminding him every day. He blames me for everything and I said this will not be allowed. So, we'll see.

Jack had a job interview at Dion's Pizza. He is hoping to get the job. I told him he will have to pay me for the difference I am now paying in car insurance as I just added him to my policy. Because he gets good grades, I was able to get a discount, but with him being 16 and a new driver, yikes!!!!! He agreed to pay the difference. Said he also wants to open up a Savings Acct to save for a car. I told him what a great idea. Then he said he wants a Debit Card for the savings acct. Ah, no!!! He's young, but, no debit card. I can just see it now................................

As for me, just getting through each day. I love it at night when Leon's asleep and I can watch my TV without interruptions and just breathe. Kind of like getting the baby FINALLY to sleep so I can collapse on the couch. I cherish those times, each and every night.

Just another day in my life. And what a life it is!!!!!!!!!!!!!!!!!!!!!!!!!!

Decisions

It's early morning, Jack has left for school, the dog is right at my feet, Leon is still asleep. He does that alot lately. This is the same man who, for 20 years was up by 4 AM, getting ready for work. This same man who worked hard up to 12 hours per day. He was a devoted employee, the first one to arrive, in fact, they would tease him about always being the first one on the job every single day. He was always favored by his employers and had a good reputation here in Aluquerque as the best concrete driller and cutter. When jobs came up, they always requested Leon. He was big and strong, going the extra mile when on job sites, putting his name and strength out there. They all knew him and loved him.

That's all gone now. He is now thin, his legs are failing him, he trips over his own feet, cannot walk unassisted, has a vacant look in the eyes that were once so full of life and now, can't even use a pen to write. Last week, I switched Insurance Companies for our car. I filled out the paperwork but forgot to write in Leon's Social Security #. The man there who did not know Leon, asked him to write his SS#. He tried, really tried then looked at me and said, "I can't do this, I don't remember what my number is anymore and I can't hold this pen". The poor guy at the counter. He looked at me as I finished putting in his SS# number and looked a little embarrassed. I just nodded my head and said, "It's ok".

Gone. All gone.

Jack was putting together a night stand for me and as I was thanking him he said, "That's ok, mom, dad's gonna die soon so I have to take over, right?". Even he knows. And he is such a good boy, so grown up. He has an interview at Dion's Pizza tomorrow and has full confidence that he'll get the job.

Our Neurologist called the other day to make an appointment for Leon's 6 month check. As I was scheduling it, the girl said, "Mrs Lucero, this will be his last appointment". And I knew what she meant. There is nothing more they can do. This disease is destroying his brain and is moving fast now. It's just a matter of time.

Oh, his appointment? She scheduled it for March 28th. Our wedding anniversary.

Marching on.......

This disease is absolutely crazy. After a very "normal" day, Leon went into one of the worst spells I have ever witnessed.

I had mentioned that one day I would like to get a gel foam mattress topper for our bed. It was like a trigger of some sort for him and he went into mumbling, semi-hallucinations and complete confusion as to where he was. When he came out of it, he was tired and seemed so quiet. It's like that. These "spells" are becoming more frequent and soon, too soon, this will be all I know of him.

Funny, though, this one did not scare me. God is keeping me strong. I am more aware of myself and let everything happen as it will. I don't shake my fist at God and ask why, why me, why him, why us. It is what it is.

We saw his dad yesterday. After seeing Leon walk and try to talk, his dad had tears in his eyes and gave me the biggest hug. It felt so good, coming from him and reaching out the way he did. He loves Leon, but, because he has gone through this with Leon's mother, it's like he was letting me know that I'm not alone in this. Just felt, well, comforting.

So, today is another day, just another day, but I thankful for the day.

Halucinations & Leon

Because of this disease my sleep is constantly being interrupted by Leon jerking, choking and now those halucinations.

Last night I was very tired and fell into a deep sleep. The kind that you actually may feel rested in the morning. All that stopped when he began to halucinate. He does not remember anything about them, but I do.

He started laughing. A laugh that was so pure and seemed to come from his heart. I can't explain it, but it was scary and comforting all at the same time. He was mumbling and then this beautiful laugh just came out of nowhere. It rattled me and scared me and then I looked down at the dog. She looked at me and you could tell she knew, she knew.

The angels are all around him. Protecting him, loving him.

Random thoughts

At a loss for words this morning. Mind seems to have gone blank. Not much news like some of the other blogs I read. In those blogs, they are going shopping, taking vacations, visiting husband's at the office, taking babies for Dr appointments, taking themselves to Dr appointments to check on baby inside, making a special dinner for grandparents coming to visit and just general chit chat.

Well, I don't shop, do not take vacations, (well, I go see my mother in Calif once per year), husband does not work, have no babies to take to the Dr's, do not take myself to the Dr to check up on baby inside (thank God) nor do I make a special dinner for the Grandparents because the only one left is my mother and well, we all know she can't come for dinner. There is however, a grandfather, Leon's dad. And we don't want to go there with me.

My day starts early. I get up before the sun and relish in the quiet that is my house. The dog follows me but she does her own thing. I cherish this time because my day is dictated on what Leon's condition is. We can go anywhere with this disease. He can wake up and be fine or wake up and be mad or wake up and be completely lost. Then, I know how my day will be. And, it is all my fault. He can get so mad at what this disease has robbed him of and I am to blame for everything. I now just agree with him to make my day easier. It's just easier.

The dog knows something is wrong with him. She loves him, but I am her everything. She does not stay close to him and I know she knows he is not right. Dogs are like that. I call her my seeing eye dog because she walks by my side, day in, day out. Not outside, in the house, walking down the hallway, living room, kitchen and garage. When I go to the bathroom and open the door when done, there she is, my ever faithful Bessie. She looks at me with such love. She makes me feel good inside she is that devoted. She has OCD too. She stands and eats in the same spot every day, eats her Num Nums in the same spot, when we get up in the morning, she walks by my side then goes around the coffee table, then, to the doggie door and outside. Circles the backyard wall the same way, everyday. God knew what He was doing when He found her for us. She is my entertainment and makes me laugh everyday.

Valentine's Day

I have never been a person who expects flowers, candy, jewelery or a romantic dinner on Valentine's Day. It's a nice gesture this Valentine's Day thing and a nice thought whoever thought this one up. However, I just was not one of those people who got so into it.

What would I want for Valentine's Day this year?

A future where Leon and I would see Jack grow up, go to college, become a successfull film maker, maybe marry and be proud of the man I know he will be one day. Get a small house up in the Jemez Mountains, go fishing in the streams, chop firewood for those cold snowy days, sit on our porch enjoying the summer evenings up in the mountains, look forward to the kids coming up for the weekends and teasing each other about how old we are gettin'.

And that is where it all ends. There will be no future for us, this is our future.

Time out!

My husband has always been a little selfish. He was an only child so attention was always on him. This disease has made him even more selfish.

Imagine your husband wanting something and he can't have it so he throws fits. In stores, riding in the car and at home. When he has a fit in the store, I do what I did when the kids were little, I just walk away and pretend I don't know him. Eventually, he gets over it and we go on our way. When we're at home and he has a temper tamtrum, I tell him to go to his room and don't come out until he can behave.

God knew what He was doing when he gave me 7 children. Taking care of Leon is just like another kid. At least I know how to do it when his behavior gets out of control. But, it's also heartbreaking to treat your husband like a child. Man that sucks.

I have accepted my lot in life. Not saying this is easy and I do have bad days, I have come to embrace what it is and am listening more to myself and letting it all fall into place, because it all will fall into place no matter what I do.

What's in a name

Many, many years ago when I was a young mother, my oldest brother had become heavily involved in a Baptist Church. My mother also became involved and one Sunday, I decided to go. So, I packed up my 2 yr old and my 10 month old twins and off we went.

Now, I hate going to new places. Hate it. I always feel inferior, like people are staring at me, judging me and I used to think that I was sure to be the topic at their Sunday lunch or dinner. Don't ask me why I was that way, it's just the way I was. I still have a little bit of that inferior complex, but with all that's going on in my life now, I don't think much about it.

As I was saying, I met my mother in the vestibule of the church. She was rushing around helping other people. I asked her, "where do I sit?" She replied, "4th pew on the left. That's where we sit all the time". As I was walking down the isle, I thought that that would be a good title for a book and decided right then and there that one day I would write a book. This is the next best thing. I may turn it into a book one day.

Yesterday I went to the DMV to renew my husbands Handicap Placard. Last year, before diagnosis, the Dr did it for just 1 year. This year the Dr filled out the form and marked the box that said-Permanent. Final, permanent. When I got to the appropriate window and she was pounding away at her computer she said, "Ok, this is good for 4 years and you will no longer have to come in here. We will automatically mail you the new one". Then, it hit me. 4 years from now? He won't be here. As I walked away, I felt the same feeling come back, like everyone was staring at me and they all knew that my husband was dying, that when they send me the new one in 4 years, I will have to send it back.

Jack said last week that when he turns 18, he and a friend want to get their own apartment. After recovering my tongue from my throat and was able to think, the idea of actually living alone was a very strange feeling. In a way, it's exciting and in another way, I'll be alone, all alone. I have never lived alone, never. I have always had my babies. Not that my husband dying is exciting, but it will be a whole new way of living and I don't know how I will do that. But, I love to challenge myself so we'll see how this next chapter in my life will go.

Entry

If our life is predicted by our birth, then my life and birth are one and the same. Fight. While still in the womb, my mother hemorrhaged for 3 weeks before I was born. My oldest sister cared for my mother during that time, changing the blood soaked bed my mother lay on and cleaning my mother up. I believe she was 14 at the time. The Placenta was covering her cervix making it impossible for me to travel through the birth canal without killing me. The Doctor gave my father a choice; “either we save your wife or baby”, my dad chose his wife. The baby would have to die. My mother tells this story and says that she overheard my father’s decision to save her and not me, so as she tells it, she prayed and asked God to save her baby too. As the story goes, the placenta moved and I came through the birth canal first to everyone’s amazement. My mother says it was God that answered her prayers and she got another baby girl, the 5th girl in a row, healthy and howling.
Out of all my mother’s children, she says I was the only one planned. At the time of my birth, I had 3 older sisters and 1 brother. My mother’s 3rd child died 10 days after birth; Carol was her name. From the time I could remember, my mother used to remind me that I was the only one planned. I would feel so loved and special. What a warm feeling it used to give me.
My mother says that I slept through the night from the moment of my birth. She says I was a very content baby. My next oldest sister was a fitful sleeper, causing my mother sleepless nights and she says she was so glad that I was such a content baby. Guess I already knew I had to be. I had to keep quiet and sleep because my sister would not.
When I was 6 weeks old my sister and I got Whooping Cough. As if my traumatic birth wasn’t enough, add Whooping Cough on top of that. My mother did not leave the house for a few months, taking care of us. When I was on the mend, my father insisted he take my mother out to a friends’ house for a game of cards. My 14 year old sister stayed home to watch us. After they had gone, my sister says that I stopped breathing and she being the Girl Scout, gave me CPR and I began to breathe again. As I got older and heard this story over and over, I used to fantasize that my sister was my mother also. She gave me life too. She was so beautiful, my sister. I always wanted to be like her.
My first memory was when my mother had my little brother. I was 3 ½ years old. The long awaited 2nd boy, finally! I don’t remember much except that when she bent down to show me the baby, I got confused. In my little 3 ½ year old mind, my mother had died and my sister, now 17 years old was my mother.

Snowy Day

I woke up to snow this morning. Cell phone rang, it was a recording from Jack's school informing me that all Albuquerque Public Schools were on a 2 hour delay. Great. Now I just heard that they have cancelled school all together. Another great.

Had an OK day yesterday. Leon had his "episodes", but those are becoming more frequent anyways so I am more or less "used" to that. It just always takes me by surprise when he has them. Don't know why but it does.

So, I have a husband who acts like a 4 yr old and a 16 yr old who thinks and acts like a 30 yr old. Funny. Hey, gotta laugh when you can.

What's with the name of my Blog, you ask? That I will share with you tomorrow. Until then, I need to attend to the needs of Leon, (he's hungry) and try to ignore the 16 yr old.