No we can't just up and go out like you

I really feel like I have to explain to some people out there some things about why we can't go out like you do anymore or why we can't just up and visit without kids. (well kid) For all of my understanding people out there it's not directed at you. I am just hoping that maybe someone will read this and understand a little better, or not. It's bugging me enough for me to say something though.
Yes, I have a 15 year old son, but he is not like any other kid. He is disabled, in a wheelchair, unable to get out of bed or to care for himself. I do not have a sitter I can leave him with here at the house, I can't afford to have the kind of sitter he would need. He is a very untrusting child who isn't going to just trust any person that comes into our house to care for him. Our CNA had been coming here for almost a year before he trusted her enough to help me shower him.

So to just hire someone out of the blue to come care for him, put him on his toilet chair if he has to poop or wipe his butt, it's just not that easy. I don't just trust anyone to care for him either and it's about his comfort and mine. If he doesn't trust that person believe me, I may as well stay home. The only time that Greg and I get out to do something together is pretty much when we are in Arizona visiting my mom. He does stay home if we're running to the store or something, but that is if he wants to stay home and as long as it's during the day.

If we go to visit people I have to make sure that we'll be able to get him and his wheelchair in, that there is somewhere that he can go to get off of his butt because he can't sit for hours at a time in his push chair, and that he and his chair are not crowding their house. I mean really, put yourself in his shoes. How would you feel if you're blocking people getting around the house and there's nothing you can do about it? Especially if you don't know any of these people? How about if your butt starts hurting and you have to get off of it? He usually gets in bed to take the pressure off or if we're lucky there is a chair or something so he can get off of his butt.

His legs are bent almost 90 degrees and do not straighten out so that causes for issues with him being able to just sit in a chair and be comfortable. If he has to poop when we are out or at someone else's house this can cause issues as well. It isn't like just putting him on the toilet either. I mean here it is because he has his poop chair that you set him on and wheel him over the toilet. When we are at someone else's house, you have to get him settled on the toilet and hold him there while he goes. It's not impossible because believe me, we've had to do it, but you can see where it causes for him to feel uncomfortable.
A lot of care goes into him and his comfort when we are at home and it doesn't end when we go somewhere else is pretty much my point here. It's difficult to find people that can do the kind of care he needs for us to go out and that's why we don't. But I do also want some to know that just because you have a strong teenager doesn't mean that I or Zak are going to be comfortable with them coming over to do any care for him without knowing them. They have to be able to use his lift, to put him on the toilet chair, to make sure he can go, to wipe his butt, and redress him. In other words, it is a bit different from regular babysitting.
It's different when it's a baby compared to an almost 6 foot tall 15 year old who can't walk. Really, it is. I know you mean well, but when you constantly ask us to come out, invite us to adult only functions, or wonder why we can't just come up to denver, it really depresses and pisses me off. If you truly are a friend, and you pay attention, you know why we can't. (I mean we can individually, just not together.)

For the special mothers out there

This is the time of year that we all take to reflect upon how this one went and how the next will go. We learn and grow from what we've done and want to do in the next year. This is also a hard time for parents who have lost children or those whose children are handicapped, it can be a depressing time. This poem though always makes me smile and helps on those days when the darkness just seems to great. And so I'll share it with you all too, maybe it can bring a smile or help you to know that you're not alone.

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth Selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew." "Forrest, Marjorie, daughter. Patron Saint, Celia." "Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it." "I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side." "And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."

I believe in Santa Claus

Christmas, ah yes Christmas, one of my favorite holidays. It is a favorite, it's been a favorite ever since I was a little girl. It was not a favorite for just the presents but for the belief in Santa Claus, that reindeer really know how to fly and the love of your family. I love this time of year because it just seems at the end of the year we get closer. Now maybe it's because they know that presents are coming, or maybe it's because they get 3 freakin' weeks of school off, or it could just be the magic of Christmas.
Yes, I know that Christmas seems to make people stupid and yes, it does seem that Christmas is highly commercialized, but you don't have to look at it that way. (Yes it is annoying when they start playing Christmas songs in October though.) You can look at it through the eyes of a child. Maybe it's your child, a grandchild, a niece, a nephew, or someone else's child, but just listen to the way that they talk about it.
Believe me, I know they can drive you nuts about it. My three bug me all freaking day long everyday about it. They talk incessantly about what they want, how many days is it until Christmas and how does Santa fill our stockings when they are hanging on the wall? But that's not what I am talking about, I am talking about the other way they talk about it.
The questions about what do you leave out for reindeer, what kind of cookies should we leave out for Santa, is he allergic to milk, (because Zak was when he was younger), and how many ornaments are too many on the tree? The love and togetherness you feel when decorating the tree, or making the cookies.
Or the best one I know, the belief in a man that they never see deliver the presents. The belief in Santa and his reindeer, the belief that Christmas is magic. Christmas can be magic if you look around to find it, if you believe in something bigger than you. I've seen Santa and I've seen reindeer, but I've never caught him in the house. I still go to bed Christmas Eve and cuddle under the blanket believing that Santa will deliver the other things that I haven't put out under the tree.
Yes I know, crazy as it sounds, I still believe in Santa Claus. Yes, I put the presents under the tree, I take a bite of the cookie and drink some of the milk, but I don't drink all of it! I don't eat the carrots left out for the reindeer and the stockings don't get filled completely by me either. There is always a present or two under the tree that I didn't buy and it's signed by Santa. The stockings get topped off with stuff I didn't get!
There's an extra skip in everyone's step as it gets closer, there are more smiles and always the extra butt kissing. (As if I can convince Santa to get them that little extra something) The air may not always seem filled with Christmas cheer and it may seem like everyone out there just gets stupid, but it's there. You just have to know where to look and to believe in something bigger than you.

The unwelcome visitor that never leaves

It has taken a devastating toll on many boys and men for years and years. Lord knows it's done a number within my family and my life for years now. You don't hear much about it, it's not a disease that is really well known. I mean let's face it, Aids, Cancer, ALS, Leukemia, these are all well known diseases but Duchenne, no it's not. I know there are a lot of diseases out there that are not as well known also but I am only talking about this one, this disease that ravages my son's body and mine.

This disease that has ravaged my family, my mother, my grandmother, my uncles and my brother. It's like an unwelcomed visitor that never leaves, the horrible smell that still lingers year after year, the one thing that makes it hard to believe in much. Believe me I know, I am aware. I spent years cursing God for what happened in my life, why he had cursed my family to deal with this disease, why my brother and why not me! Why not me, I who was older, stronger, willing to take all that came to ease my brother's pain.
Why why why? I spent years not believing, even though my mother still did and does. She tried, I know she suffered more than I have so it was very interesting to me that she did believe in God. Her older and younger brothers both had DMD, they both died in their very early 20s. I know she thought of this often with her son, she wasn't sure she would be able to be strong enough to make it through with a child suffering from the same disease that took her brothers.
She did, she managed when she thought she couldn't because she had her family, well let's be honest, she had her sister and me. Her mother died before Tom did as did my grandfather. One of my father's sisters tried to help and be there for her when she could, but it was difficult I'm sure. But I am not going to go into that other than to say that my father wasn't around and most of his family was not either. I'm sure it was difficult with my mother being their ex sister in law and all. (I still have bitterness here so this is where that part of this story stops.)
Then there is me, when I was 20 I found out I was pregnant. At first I was freaking out, how would I be able to raise a child if it were a boy and had DMD? Was I going to be strong enough to do it, could I do it? How would people look at me knowing that this ran in my family and how big of a chance I was taking by having a child? Then I woke the fuck up and realized that it didn't matter to me how anyone viewed me because their opinion didn't matter.
It was hard once I found out that I was indeed having a boy. I knew deep in my heart of hearts that he had it but denial is a lovely place to be for 7 months. I knew that I would probably defend my reasons for having my son once he got older but I had no idea that my own grandmother would tell me at my baby shower that I was stupid for having a baby knowing the risk I took. Once he was 9 months old and it was confirmed it was worse with the people that knew it ran in my family.
After my brother died I was told not to depend on my family, (my father's side), that I knew what I was getting into when I had Zak and I couldn't expect any support from them. Which I didn't need then and I really don't need now. I will not defend the reason that I had my son and I shouldn't have to. Have you? Did you ever have to defend the reason you had your child? Have you had to explain to people that yes, you knew there was a chance and yes you had them anyway?
I have been through hell with Zak, the hell he's been through in the past few years has been tough. I've always worried that he would grow to hate me, knowing that this disease is carried in my genes, but he doesn't. I asked him about it a few times and he keeps telling me no. He said he couldn't hate me because I gave him life, and because he knows that I would take his place in a heartbeat if I could. But I can't, the only thing I can do is make his life as good as it can be.
There have been several mothers that have lost their sons in this past year and it weighs on my mind. I know that I have been blessed for Zak to have been in my life as long as he has and that I have no control over how long he'll be with me.
As the mother of a boy that has this disease though I believe that it's my job to let you know how it is when you have a child like mine. I felt the need to share this part of our life with you tonight to show you of what it is like to be on this end of a disease like this. It is hard but possible and you can expect many more blogs of how it's going. After all, you'd never know if you didn't hear it from someone who lives it.

Blah, blah, blog

I set up this blog as a way for people to follow what I have to say and yet I can't bring myself to post on it everyday. It's not like I'm not spending time on the computer, it just seems like when I sit down to blog 5 million things start happening. The phone rings, Greg starts talking to me, Zak needs something, the CNA is here, the kids are here and need homework help or something.
Once I get distracted forget it, whatever it was that I was going to blog went right out the window. Just too many things to blog about too it seems. I just can't seem to focus. Of course I've been busy with wrapping Christmas presents that my mom sent home with us and those we bought for the kids.
We don't have alot of money this year due to Greg being out of work since June but we've managed to get some things for us all. So it has been a bit of a stressful time but I am still remaining in the spirit of positive.
See, there are blogs there waiting to happen, I've just got to set aside time to put them down. Ha, more like I need to write them down and then put it on the computer later. I have a hard time setting aside time for me.
Well, I guess this was a start.

What you missed

While you were off living your life and forgetting about me, I want you to know what you missed. You missed my first day of school, you missed my first report card, my first class party. You missed my 3rd birthday, my 4th birthday, my 10th birthday and now my 15th. You missed my first time singing in front of the whole school! You missed out on the good and bad I had in the three years I was in regular school.

Of course you also missed out on the ups and downs with my body. You missed out on me getting weaker, my legs weakening until I finally couldn't get up one morning. You missed out on the cool chair I got to zip around in when I couldn't walk anymore. You missed out on having the "man" talk with me and explaining all about what happens when you're a boy hitting puberty. You missed my voice changing and my first armpit hair.

You missed out on the rough times, the 4 surgeries I had, the infection I lived with for a year and the misery of that time. But it's for the best, you did say that it was going to be too hard on you to be there. You missed out on watching my mom go through all of this, most of it alone, but she stayed strong. We were strong and still are, without you.

I don't need you, never did. I've got all I need, I am a strong, smart kid and it's just too bad you never got to know me and never will.

I'm going to pretend I didn't hear that

My son says after he hears me holler "You sliced my butt with your razor!" Yeah to you all it's funny but I'm the one sitting here with a sore butt cheek that has a razor slice on it because my shower is not big enough for two people. Well now I have to explain because I can't imagine what some of you are thinking...well I can and that's why I'm explaining. =o)

Greg was at the back of the shower shaving and I was under the water washing my hair. When he was done shaving his face he needed to get under the water, so I turned sideways to let him pass and his razor raked across my rear. At first I thought it had just be the handle end of the razor that did it, until my cheek started bleeding.

So yeah, I yelled out that he sliced my butt with his razor, to which my son yelled that he was going to pretend he didn't hear that. That's what happens when your kid's room is right next to the bathroom that has a shower curtain for the door, he can hear everything. (the shower curtain is because Zak's bathchair can't fit through the narrow bathroom doorway with the door on)

Oh my aching butt...cheek.