From A to Z

From A to Z

It's been a long time since I've done a blog meme but I saw this one on Deanna's blog, Tea With Dee and figured it would be something fun to post while Ben is napping. Enjoy!


A. Age: 25
B. Bed size: Queen. But I long for a King size bed since our youngest child periodically likes to sleep with us. He and my husband are bed hogs!
C. Chore that you hate: Dishes. I would almost pay money for someone to come in and do only this chore.
D. Dogs:  My husband has an 8 year old Yorkie named Curly. Notice I say my HUSBAND has a dog. I, however, do not. But I would love to have my very own little Shih-Tzu...or Chocolate Lab. : )

E. Essential start to your day: My Herbalife tea and shake
F. Favorite color: Green
G. Gold or Silver: Definitely silver. I think gold is kind of gaudy...
H. Height: 5'5"
I. Instruments you play: Clarinet and Alto Saxophone - but it has been quite awhile, so I probably wouldn't sound too good! ; )

J. Job title: We'll go with Domestic Engineer. ; )
K. Kids: Carter, my big 6 year old, and Benjamin, my precious baby 2 year old. They are the lights of my life and have taught me how to keep smiling even when I don't want to! 

L. Live: Happyland.
M. Mother's name: Melinda

My beautiful mother and me. : )

N. Nicknames: Well, the obvious....Joyous, Joyful, Joy to the World. Then my husband Josh, calls me Joyosephine. Lord knows why, but I think it's pretty cute, so I let him. : )

O. Overnight hospital stays: Both of my C-Sections but nothing else that I can remember.

P. Pet peeves: Judgmental people and close-mindedness

Q. Quote from a movie: The Joker: Never rub another man's rhubarb. - Batman (1989) 

R. Right or left handed: Right.

S. Siblings: Two younger brothers, Micah (23) and Cameron (15). 

T. Time you wake up: Sometime around 6:45am...but not by choice. I am most certainly not a morning person.
U. Underwear: Hmm, mostly boy shorts or bikini cut from Victoria's Secret.
V. Vegetable you hate: I keep trying to like Asparagus, but I really don't. Or turnip greens. *shudder*
W. What makes you run late: Procrastination. I always wait till the last minute to do my hair or pack the diaper bag.
X. X-rays you've had: Dental, ankle, and knee. But I haven't ever broken anything. I sprained my ankle but they wanted to rule out a break because it was so swollen.
Y. Yummy food that you make: I'm not big on cooking, but I've been known to make a mean grilled cheese. ; ) I'm trying to learn to love it. I prefer baking things from scratch like brownies and vanilla cupcakes. 

Z. Zoo animal: It's a tie. Between Snow Leopard and the Elephants.

Now it’s your turn! I’d love to read your responses, 

so if you choose to do this meme, 

please leave a link in the comments!

Some days...

There are times when I get so angry about what Benjamin is going through. I feel like this could have been prevented if I had been seeing an OB doctor that gave a crap. I was high risk, but treated like any other pregnancy. I have been asked many times "Why don't you hire a lawyer?" and to tell you the truth, it has crossed my mind. But it would be a long, hard fight and one that I would likely lose. Even if I did win, it wouldn't take the Cerebral Palsy away. It will always be here...keeping Ben from a normal life that he deserves. While that doctor goes on practicing medicine; her life completely unchanged. I shouldn't continue to be angry with her, but anger really is hard to let go of. Especially when it's about something that affects my child.

I was looking at pictures today of other children that have CP and are much older than Ben. It was extremely difficult for me to do. Not because the children are hard to look at, they're all beautiful. But because someday, that will be us. My child's life is ruined because of the negligence of a doctor that didn't care. Nothing in the world will make it better. Not even suing her out of revenge. Because that's exactly what it would be: revenge. It doesn't look good on anybody. Anger is an ugly emotion....

I just pray that other parents in our town do not fall prey to the same negligence that we were served. We only have one OB clinic and only 2 OB doctors. You are required to see both doctors, the PA, and the midwife at some point. Oddly enough...I only saw my "doctor" twice my entire pregnancy. If I ever need an OB doctor again, I will not be going to that clinic. I'm not sure that i'm a big enough person to face the person that I feel was a big part of the reason Ben will lead a very challenging life.


- Posted using BlogPress from Joy's iPad

And the winner is...

After Josh's car was officially totaled, we were obviously in need of a car to replace it. We went with a...




2011 Nissan Pathfinder S!

What drew me to this vehicle is that it had a 3rd row seat, but we can also fold the back row down and haul things in the back. There is also a tow hitch receiver, so if needed, we can tow small loads. Most SUV's with 3rd row seats were out of our price range, but we were able to get this one within the range we wanted/could afford.



















Now THAT is a happy man! : )


- Posted using BlogPress from Joy's iPad

Anti-Depressant

I struggle every single day with depression. It is a big black rain cloud that hovers over me everywhere I go. (I also deal with mania occasionally, too. But that's another story for another post.) I have plenty of things to be angry and sad about it. Plenty of things to complain about. Don't we all? I am not an optimist, so sometimes it's hard to see the good in bad situations. But, I'm a realist. So I don't always see the bad, I just see what is reality. Good or bad.

I continually watch the posts of some people on Facebook who are always whining or complaining about something in their lives. Nothing GOOD ever happens to these people. At least that's what they'd have you believe. I have caught myself thinking "Well if you were in my shoes...", then I stop and think "Wow, if they WERE in my shoes, they'd be able to find the good in their lives."...hopefully. I live everyday with a child that may not walk for months or years...or ever. We don't know if he'll ever roll over on his own or hold a spoon and eat on his own. We DO know that he is an absolute angel who is almost always smiling. He attracts people with his gigantic, sparkling blue eyes and big grin. He brightens the day of people he comes in contact with. He is happier than people I know that have never thought twice about putting one foot in front of the other and walking...or picking up a fork and eating. He is aware of what others are doing and that he can't do those things. Yet, he is HAPPY.

I strive to be as happy as that baby boy. He helps me be happy. He reminds me that life...even when it kind of sucks...really isn't so bad. He is one of my anti-depressants. : )





- Posted using BlogPress from Joy's iPad

A Total Loss

My husband was recently in a wreck in which he was very lucky. A teenage girl not paying attention, rear ended him going at a high speed. The skid marks are only about 6 ft long, so when she hit it was almost at her top speed because she hadn't been trying to stop for long. The impact was so hard his seat broke and the car was spun completely around. He made it out with no bones being broken and no other serious injuries. The angels were watching over him that day.

Below are a few pictures of the car:



















It has been officially totaled and we have purchased a new vehicle. I will post pictures of it once it gets to the car lot to pick up...

- Posted using BlogPress from my iPad

All for the love of a baby boy...

I would do absolutely anything for my kids.

This whole social security process is tiring, but hopefully in the end it will be worth it and Ben will get the things he really needs. We have reached a point where we NEED certain equipment for him...special stroller, braces for his feet, a stander, a special car seat, etc. We are also going to need specialists for some of these things, which is where the disability comes in to help.

He is making a lot of progress with his limited physical therapy, but we can only go so far with that. We will eventually need the equipment to help him be more mobile. That is really our main goal at this point: mobility. For you or me, it's easy. We want to stand up and walk..so we just do it. It's not so easy for Ben. We learned recently that his gross and fine motor skill levels are at that of a 5/6 month old. His social skills are at the level of a 10 month old. Ben is 18 months old...so we have a lot of work to do. We want him to be able to get to where he wants to go.

All of this is going on for Ben while we also received a diagnosis from our pediatrician for our 5 year old, Carter. We have been having trouble with him at school, and home, but mostly at school. He has been officially diagnosed with ADHD. I am currently reading a book titled "Parenting Children with ADHD: 10 Lessons That Medicine Cannot Teach You" by Vincent Monastra. I'm hoping if I educate myself more, I'll be able to help my son better. We are currently on our 3rd medicine for him, but are looking into a child counselor and possibly homeschooling him. He's an extremely intelligent boy, but it's hard to see sometimes because of his lack of impulse control at school. They are considering holding him back in Pre-K, but I don't agree with this decision. Academically he is where needs to be for Kindergarten and with more help his maturity level will be where it needs to be as well. I'm getting sent elsewhere to get him help, but not so much support from the school system. This is why I'm considering homeschooling him. He will get the attention he needs and I'll be able to help him with his impulse control and inattentiveness.

I have been blessed with 2 very special boys, that just happen to require a little more attention than other children. I love them both with all of my heart and hope that someday with my help they'll both be compassionate and productive citizens.

I pray...

Somedays I cuddle Ben and imagine what life would be like without Cerebral Palsy involved. Would he be into everything he could get his hands on? Or would he still be a "sit back and take it all in" kind of guy? When I found out I was pregnant with Ben, I was so thrilled! Of course, you start imagining what it will be like when they get here. No one ever thinks that their child will have something like C.P. I know I certainly didn't.

Of course, life doesn't always go the way you imagine it will...

That said, I wouldn't trade Ben for anything in the entire world.

We sit in my recliner, he smiles at me as I make some sort of silly noise or sing his favorite songs and steals my heart all over again. But amidst the happiness, I can't help but feel complete sorrow. Sorrow for what he's missing. I pray daily that he won't ever know what he's missing. I pray that he won't notice people looking and wondering.  I pray that with all of the physical therapy that we're doing that maybe, just maybe, he'll be able to lead an independent life as an adult.

Exhaustion.

Well, I'm up rocking Ben to sleep again.

I am no longer tired. No, that bus left the station a long time ago. I have reached the point of complete and utter exhaustion. Ben's sleeping schedule turned into that of a newborn (well, very similar) over a month ago.  I can't tell you the exact day it started, hell, I do good to tell you what day we're on right now most of the time.

One thing I can tell you, I have a wonderful husband. He takes turns with me so that I'm not the only one getting up. Now, don't start that "but it's his child, too" junk...believe me, I KNOW.  But how many husbands/fathers that you know, are going to get up every other night 2 or 3 times a night then get up for work a couple hours later? Yeah. Not very many. We gripe and fight just like any normal married couple over other normal things, but we're exhausted. When it comes down to it, we know how much the other person really does and both of us appreciate it. Neither one of us could imagine doing this alone. Ever.

Being Truthful..

If I have one more person tell me Ben is "getting there" or "getting better" or  anything of the like, I just might scream. I know they're just trying to be encouraging but it tends be more frustrating. Cerebral Palsy is not something that just "gets better", it's not progressive, but it does not just "get better" either. As a mother I already feel as if I should be able to do something for my son who has to sit back and watch as everyone moves around him. Who has to wait to have the food brought to his mouth because he cannot pick it up himself. Who has to do physical therapy everyday with his mama because he's so tense that he cannot rollover, sit up, crawl, stand, or walk. It absolutely kills me that he cannot go and do like a "normal" 13 month old.

How about everyone just appreciate Ben for what he is? A joyful, happy, smiley baby boy who loves to be tickled and tossed in the air. He adores his older brother, who can make him laugh like nobody on this planet. I already know what we're going through. I have a feeling what we're GOING to go through. I don't want to hear that it's going to "get better". You don't know that. You cannot promise me that. I know I should be grateful for people trying to help me feel better. But the only thing that would make me feel better is if he did not have this. That is just me being truthful...

So where do we go from here?...

That has been what I've been asking myself since we first found out that Ben would forever have Cerebral Palsy. What in the world do we do now? Well, I still haven't quite figured it all out yet, but I'm trying. Each day is another chance to learn something new.  My husband and I are at different phases of our coping. I think it may take him awhile longer to get over the denial stage. I don't think I have ever been in denial to tell you the truth, though. I have been more angry than anything. Angry because Ben may never get to experience normalcy. But, really, normal is a pretty relative term I think. While I still have my days, I have mostly been okay.

We are still doing physical therapy twice a month and have an early intervention nurse that comes twice a month as well. He has come a long way since we first started, but still has a long way to go! He is starting to move his arms towards things more. He is loosening up much faster when we do our floor stretches than in the beginning and has good head control. We may soon be making splints for his feet for when we do PT and he needs to put pressure on his feet. You would have to see him in person to really get a clear understanding, but his feet turn noticeably outwards.  So, we're going to try and correct that with just splints.

We recently had his one year check up with his pediatrician.. The doctor said he IS diagnosed with CP. Last check-up at 10 months, he was just leaning towards it. It didn't really come as any big surprise, but it still isn't something a parent wants to hear. He said that Ben is a smiling, happy baby with great head control. That he has very very stiff muscles, but his joints aren't locking up. If we hadn't been doing visits with a physical therapist and the EI nurse, he would be a lot worse. He was also a little concerned about his vocabulary, considering there is none. So we discussed possibly teaching him some sign language to communicate with us once his hands loosen up. Overall, a good visit, nothing overly exciting. Which could be considered a good thing.

I hope all is well in your part of the world, wherever that may be. : )