Sunday, November 25, 2007

The Man of the House!!

Christmas you gotta love it, I love it! I especially love the lights and decorating for Christmas. I think that it's going to change after this year though... after all I am the man of the house!! ( Sorry honey I do love you though!)

Yeah my Marc is great for so many things, but not when it comes to man duties!! I take that back he's really great for sitting on the couch and watching football all day and he even does an ok job at cleaning the basement aka "his man cave", but if I need him to pick up a hammer or a tool set he's worhtless.

That brings us to yesterday when I decided I didn't need him and I would put up the lights on the house myself. I got up on the ladder and mauvered those clips ( you know the ones that don't work!) and slowly, and I mean slowly put up the lights at the very top of our garage, only to get the end and with the slightest pull see my lights that I worked on for over two hours take the domino effect and fall to the ground.

Ok so there were some choice words, but I decided that I would try it again now that I knew what I was doing, so I got back up my ladder and started my way across the garage. I was about half way through for the second time when I again slightly pulled the icicle light and again the domino affect took place.

Again more choice words, and I think a why in the heck am I marrying this man came out out of my mouth! You know again it became his fault that the lights weren't working and it was his fault that I was out there in the first place doing the lights since I saw all the men in the neiborhood being good little husbands and putting up there lights with no problems.

Now I like the phrase I am woman hear me roar, and I Perservered, but this time I said screw the clips and forget the original place where I originally wanted the lights and went and got a good old hammer and nails and pounded those suckers directly above the gargage door. (I'm still hoping it was wood I was pounding into, although I'm not entirly sure!)

Three hours later I was done!! I am Woman hear me Roar! I'm just hoping the holes above the gargage won't really matter!!! SHHHH!!!

Tuesday, October 23, 2007

If anyone knows me you know I’m notorious for calling people “EEYORE”. I’m a pretty positive person and I really believe this is because of Zach. He has made me positive and he has made me enjoy life and not have things eat at you. Yesterday I was tearfully watching Oprah. The show was about if you knew you were dying what would you do and how would you handle things? It shared two stories one about a woman around my age that has terminal cancer, and a man that is a professor (with three small kids at home all under age 5) who was given just months to live from pancreatic cancer. Both had this ora and this magnificent attitude on life. The woman with cancer said that “life is terminal” that no one is going to live forever and that no matter what; you should live each day without looking back.” The professor did a lecture to the Oprah audience and on one of his power points he had a picture of Tigger and Eeyore. He then said that you can either live like Tigger or you can live like EEYORE, but he chooses to live like Tigger. At first I was watching and thinking why in the world am I torturing myself by watching this. I get very emotional talking about people losing there lives or battling serious diseases. I often have had the “Why Zach thought”, and every once in awhile I still have a pity party. (Which I think is part of the grieving process) but as I continued to watch I was amazed at their stories and what message they were getting across. That through their horrific news they were able to share and have so many people learn from them. Although at this point in my life I am not dying, (I think!) I get it. I get it because of the greatest gift I have in my life Zach. We live like Tigger, and we will always life like Tigger. If anything good can come out of Zach getting this horrific disease, it’s the fact that HE is showing people how to live life and my job is to share his story and to make sure people see how good of life we have and that we are TIGGER’S .It’s not that I’m not going to continue to ask why Zach, or have pity parties, but I know because I’m not living the Eeyore life it’s going to be few and far between and that we can enjoy life with a bounce and a smile. As my friend Geri-Anne says you have to “Live for Today”! No matter what situation you are facing. I hope Zach’s story and others inspires you, because that makes the worst things in life somehow a little better.

Thursday, July 19, 2007

Get off the Elevator!!!!!!

I really try not to complain that much about how people are very into their own world, but there comes a time when you have to SHOUT OUT to the non disabled world about common courtesy, one of them being if you can walk then Don't RIDE THE ELEVATOR.

I can't tell you how many times we have to wait for an elevator because it's packed full of able bodies that aren't pushing strollers or in or pushing a wheelchair. This has got to be one of my biggest pet peeves, because we don't have a choice, we have to take an elevator. Believe me, I have tried to tip Zach back and figure out how to get his wheelchair on an escalator step and ride down. It wasn't pretty and very unsafe and I'm sure Zach was very unappreciative of his heart going into panic mode!!! It is very frustrating to see when the elevator opens up and its packed full of able bodies and you can't get on. The worst part is that they just stare at you and wait for the door to close, I have met very few people that get it and will try and get off so that a wheelchair can get on.

I am not a hypocrite. You will not see me using the elevator if I'm not with my son, and I even go further then that, if someone else happens to be with me, I or that someone always take the escalator and only have my son and 1 escort take the elevator.

I could probably name a ton of other things that bother me about life in the disabled world, but this is the one that hits us more times then not. I'm starting to lose my cool over it so I decided it was time to educate!

Thursday, May 24, 2007

Doctors out to help or make money?

I work for my son's Pediatrician's office, they all know Zach's story and they all know how much we live at any given Dr's office. As far as Zach peds Dr, I really do like her and I do know that she has a big heart when it comes to Zach. She actually was the first Dr that agreed with me that something was wrong with Zach. All the specialist told me to come back in 6mos that he was fine, 6 mos later my son was barley able to walk and had lost a bunch of words. (yeah he was fine)

A few weeks ago she (his ped) came up to my desk and told me that a certain Dr (who happens to be the owner of the clinic) went through Zach's chart and wanted Zach's ped to go talk to us about Zach not getting his yearly physical and that he has a lot of vaccinations to get. I literally just looked at her and said "do you know how much we are at a Dr office, his physical is the farthest thing from my mind, I know that Zach is delayed and him not knowing his ABC's does not need to be retold to me. We get a physical ever time we are at a Dr's office, and as far as his vaccinations we are on IVIG and it's not necessary because that's all in the IVIG. " She agreed with me and I thought that really was going to be the end of story. A little while later she reappeared at my desk and said this Dr that went through the chart really wanted me to make sure all these vaccinations are in the IVIG protection and that I need to double check with the Dr? I told her I would, but was irritated.

Fast forward a week and I am in a meeting about new protocols that if a kid is on this particular insurance that we need to fill out this certain sheet, because this insurance is paying bonuses to the clinic for getting yearly physicals and all the vaccinations done. Well you guessed it, Zach happens to have this insurance. I was fuming. It really was a money issue.

It is so funny because after Zach's Dr came up to me, I was telling a friend/coworker about it and she being the pessimist said he is so after more money. I being the optimist said noway they were just concerned. Now I know it was about the money. The only satisfaction I'm getting is knowing that he won't be getting any bonuses on our account. There is noway in heck I will be bringing Zach in for a physical. He doesn't need them, and he certainly doesn't need to help line a pocket book.

My friend and I had a discussion about this and we think that Dr's should practice and stay out of the money end of it, because it really is a conflict of interest. Maybe because I work in the medical field and have insider information, but it is a greedy business. Luckily for Zach we have found some really good and genuine specialists. So I know it's not all corrupt.

Friday, May 18, 2007

As Seen on the Internet

"Some Mothers Get Babies With Something More"
By: Lori Borgman Columnist and Speaker
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that cansee, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points thatare the envy of the entire ballet class.Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more.Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.Most of those mothers can remember the time, the place, the shoes they werewearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible!That doesn't run in our family. Can this really be happening in our lifetime?I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram,there's no such thing as a perfect body.Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will beunseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundredspecialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're aneighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

Wednesday, May 16, 2007

Things I wonder about.

Today I had coffee with a good friend and who also happens to be Zach's old preschool teacher. He and his wife came into our life just when Zach was getting sick. They also had a child named Jack who was ill, and also happened to have sorta the same disease that Zach was later diagnosed with. Actually Zach was diagnosed two weeks after their son Jack passed away, so I knew all too well what a horrible disease Zach was facing.

Jason and I get together every few months. At first it was hard for me, and I believe it was also hard for them because Zach was so much like their Jack, and for me I just felt horrible for them and didn't know what to say, and I also felt guilty that I still had Zach. I look back on it now and think that was stupid, but I had never been around anyone that has lost their child before, and it was raw emotion.

Unfortunatly Jason and Naomi are living my future, a world without their son. I know they continue to have a hard time with it as any parent would, but they also continue to open up there hearts to me and others. Jason talks very openly about his experience and is always reaching out. I would also like to think that us getting together also is his chance to talk about Jack and we can remember him too. As bittersweet as it's been, I can't help but think that God put them in my life. I mean really what are the chances that they have a son with almost the same disease as Zach was about to get diagnosed with and Jason turns out to be Zach's teacher. It was Jason first year teaching at this school and we had just moved to this city a few months prior. It's a rare disease. That has to be divine intervention, or I could be reading into it!!

A couple of weeks ago I asked a friend if she thought that a group of us would still hang out together after our kids were gone. We have been such a part of each other's world for a couple of years now, but I can honestly say they reason why we are all together is because of our kids. Our kids are in activities together, and that leads to us parents getting together. She answered by saying it depends if you want to stay in the disabled world or not. I have thought about that a ton and I hope that I won't turn my back on it, but I bet it would be hard. Jason, Zach's teacher didn't give up it persay, but he has a hard time teaching kids now, so he went into advocacy and parent teaching. But his wife continues to teach special ed. I think that would be so hard, but what a gift she has. There are not a lot of people that have had first hand experience with it, she is able to help others through her tragedy, but could you imagine the pain? I can only hopw that our story will turn into good somehow, that somehow I can make something right and make Zach's life a legacy.

There are so many bittersweet things that come out of a child with a disabilty. You really do have people come into your life that you would never of gotten to know that have become very good friends and you can't imagine your life without. You also can't imagine how incomplete your life was without your special child, and how at least for me how shallow my life was, and how selfish I was. Zach has taught me so much, I know that I wouldn't be the person that I am today without this unfortunate circumstances, but then again are they really unfortunate? We grieve the fact that our perfect child has issues, but they really are still perfect to us. I love my little boy. Given the choice I really would do it all over again...

Tuesday, May 15, 2007

The Nasty EX

I consider myself a single mom, and I consider Zach's dad a scheduled dad. You know those dad's that refuse to take their kids when they are not scheduled to take them. So in our case Zach's dad is only a dad every other weekend. (Yes I'm Bitter).

I really try to make Zach's life as fun as I can. I really try and sign him up for things that he will enjoy. One of those being an adapted T-Ball league. This is called Challenger league. It's only for special needs kids and most kids are paired up with a typical peer that helps them play the game of baseball. In Zach's case he needs a lot of help, but always has a smile on his face when he is being pushed around the bases or being helped to hit the ball. He loves it.

Last year they were short on buddies, so Zach's scheduled dad and I had to step up to the plate and be Zach's buddy. When the scheduled dad was out there he would do his own thing with Zach and spin in circles, anything but pay attention to the game. Irritated most us parents on the bench watching. This year though they had enough buddies sign up and all the kids were able to be with a typical peer. Our peer that Zach got was awesome and so good with Zach. He would just talk to Zach and he would light up.

Well guess what the scheduled dad did not like the fact that he was sharing his kid and teaching this boy what it's like to have a disability. Scheduled dad thought Zach was bored because he wasn't being spun around and made dizzy. So he took it upon himself and told the buddy that he was taking over the buddy position. I tried to stop this, but scheduled dad's mind was made and instead of making everyone uncomfortable I walked away as mad as can be. Mind you that scheduled dad is one of the only parents out there, and all kids basically have a typical peer as a buddy.
When I signed Zach up for T-ball it was suppose to be about Zach. This year they have kids Zach's age wanting to be a part of it and it's teaching everyone, and everyone is having fun including Zach. I have seen him with the biggest smile on his face. If Zach was a typical kid scheduled dad would not be out there playing with him, scheduled dad would be watching. That is how Challenger League is suppose to work.

This is about suppse to be about Zach, , let him be with his peers and doing something that a normal kid gets to do without there parents. Let him be a typical kid for once in his life.

Well I do believe in Karma. About 10 minutes into the game scheduled dad was once again doing his own thing out in the field, and scheduled dad and the wheelchair with Zach went flying. Zach was hanging upside down and scheduled dad was lying on the ground. I thank goodness I did not see what happened, I was to busy talking to the buddies mom explaining all about scheduled dad. Everyone starting calling my name and I looked up to see my son hanging upside down. I was irate, and yet because Zach was fine I was so glad that it happened. The buddies mom told me that, that would never of happened with her son.

Later on scheduled dad told me he thinks his shoulder was dislocated. All I could think about and say was good! Karma gotta love it.