A date with the Senator.

So, some people are not going to like this post, while others may love it. I will be having a meeting with Senator Young in August to talk to her about the medical marijuana bill. but let me start from the beginning...


Let me give you my views on medical marijuana: There are MANY medical uses for it. Don't believe me? look it up, do your research before you judge. I don't necessarily think EVERYONE should smoke it. Have you seen some of the people who think they need it? While for a lot of people it can help with anger issues, people who have cancer are known for using it. It helps with appetite and relaxes muscles for people with high muscle tone, like Carsyn.


One use is by taking the THC out and leaving the CBD's. The CBD's have been known to control seizures for people. Now it may not work for everyone, it's not a miracle drug, but it's something. We have been through a LOT of seizure medications, the latest being Clobazam. This new drug is supposed to be better than what Carsyn has been on in the past.. Guess what? His seizures are just as bad if not worse. So this is our last option. We are, at this point, hopeless about getting this under control. Although the bill was passed through Assembly it is not legal to use it medically yet in the state of New York. I have called the health department, his doctors, Governor Cuomo, Kind Clinics, Matt Simon from the Marijuana Policy Project and he helped me get in touch with Senator Young's office to get more information about this and schedule an appointment.

I will be meeting Senator Young not only to tell her that I am in support of the bill but to tell her WHY. She has never been for this bill, so I'm hoping Carsyn's story will change her mind a bit on this subject. This could help a lot of people. not just kids and people with seizures.


Passing this bill would give us some hope in controlling Carsyn's seizures. With the help of Matt Simon, and hopefully some of you guys out there in NY state we can make this happen. We just have to fight for it. and I'm willing to do so until the day I die.

I don't care what I have to do for this, if I have to take it to the media, I will. I will not stop. and I hope you'll help me in this fight.


for information on how to get a hold of Matt Simon, or Senator Young's Offices( to pass on that you're in support of the bill) email me at paulakelwaski@gmail.com


So until next time <3 <3 

We Made It To SIX!

Today, we will be having a birthday party for Carsyn.

I can't believe we have been blessed enough to make it to 6. Someone out there is looking out for us. I woke up this morning and wanted to cry from sheer joy. Six. Six years with this wonderful little boy, and I want more.

I told Carsyn, ever year you have a birthday, I'll make the party bigger. I don't care about the cost, these birthdays we thought we would never see.

I'm nervous, yet excited to find out who is going to show up. Nervous about them not showing up, but excited because we invited a LOT of people.

All these thoughts are running through my head. We are about to show Carsyn how many people really are there for him. and the amount of people that told me they would show is crazy. I lost count at 40. and I invited more people who didn't see me to tell me if they were definitely coming or not.

We made it to six. As much as I don't like that he is growing up, he made it to a birthday the doctors didn't even bother mentioning because WE NEVER THOUGHT WE'D SEE IT.

We didn't even think we'd see one.

We made it to six...

and of course he's sleeping in.


<3

I can't wait for Seven.

<3 <3

So Blessed

I am incredibly blessed with amazing friends and family. Some Older and some younger than myself. It seems that not all of the human population can be evil, mean people towards kids like Carsyn.

I took my son to a fire that one of my friends was having at her house. I love having Carsyn around her because she's one of the few people who actually pay attention to him. She talks to him, and treats him like any other child. I love her for that.

At this fire someone I know that had never met my son ran up to him and introduced himself. THAT. that right there gave me hope. Hope that more people are like that. That not all people are rude to kids with special needs.

So no matter what you're going through. No matter how bad you feel, or how lost you think you are. There are people out there. People like my friends Biancca and Nick. I have so many people who are so good to Carsyn that I could mention. But you all know who you are. I am so grateful that I was given this life, no matter how hard it may be for me at times. no matter how much I feel like giving up at that moment. No matter how sad I get over what Carsyn has to go through. I can always count on Someone pulling me out of that funk. Always. and it makes me love my life. Carsyn is usually my savior. He pulls me out of any and everything that life throws at me. But its nice to have others there also.

For a while, I felt alone. but all I had to do is weed through my friends and find the ones that really helped me and Carsyn. and now I just feel blessed.

So thank you, to each and every one of you. No matter how new you are to me. You have helped me. Some without even realizing it.

and then there are my readers. For those of you that keep coming back, thank you. You guys make me want to keep going with Carsyn's story. And as long as I have you, I will continue.


So don't be sorry for what we have to go through. You wouldn't have been given this life if someone didn't think you could do it. We are given what we have for a reason. I still don't know my reasoning. and at this point I don't care to find out. I learn something everyday. I get stronger. Every. day.



So until next time <3 <3 <3

I love you all.


"Wherever there is a human in need, there is an opportunity for kindness and to make a difference."

-Kevin Heath

Oh yay.

My life lately has been a big giant mess....
Well, actually. That's my life every day.

I recently got my top to wisdom teeth out. So I have been on pain medication for that. totally not fun. Weird part is, people are actually being decent now. It's weird. I'm waiting for the familiar feel of the knife stuck between my shoulder blades.

On another note we FINALLY had Carsyn's EEG at Strong hospital. It was wonderful. I can't telll you enough how much I loved that place. The doctors and nurses are wonderful. <3 They did however, find that Caryn's seizures are sleep related. He gets tired, he has a seizure.

The seizures are more under control... but very intense. his heart rate gets really fast and his breathing becomes shallow and rapid. The Doctor says we need to get this to stop... because apparently his heart rate could go irregular and he could go into cardiac arrest.. It happens with SIDS.

Sudden Infant Death Syndrome. SIDS. I nearly passed out when he said the words. You never think this stuff could happen to you. But it can. and if you're as unlucky as I am.. it will. :/

I also haven't been able to keep up with my schooling. AWESOME. :/
I think I'm going to be changing my major and going to a different school. If you know me well enough, you know I have more than the appropriate amount of makeup that a woman should have. WAY more. I'm constantly spending money on makeup when I have the extra cash.. I usually save up for a few months and then head to the nearest Sephora. I'm horrible.

So, there's a possibility that I may end up relocating... I'm hoping if this is my decision, that Todd will go with me. But I may be thinking selfishly. I don't want to be selfish. But I also know that love should inspire you to do things that you have always wanted to. It should make you a better person, not hold you back and control your life. Which Todd DOES NOT do. let's just hope he thinks the same.

Surprisingly, my boss is being very understand. I had to call off a couple times this week... and if you've read my blog before you know it ended in me quitting.

I told her how afraid of losing Carsyn I am, and that this is not just a "scare" this is a life or death situation with Carsyn. When we have to go to a hospital it's not something that can be brushed off. It's not just a cold, it's not just the flu. It's something serious. and she understood. She was comforting and made me feel really good about my decision to come back.

Carsyn on the other hand is LOVING this weather! It's been so nice! until today. We spent yesterday after I got out of work in the sun and hanging out with family and friends.

Those are the days I love the most. I wish we did it more often, but unfortunately we don't always have the time.

So here's to my friends and family who make the time for us when we can come out. Thank you. It makes for one happy little boy and gets us out of the house and with people we love. <3

I promise not to leave for so long again!

So until next time <3 <3

3elove.com

Before I start off I would like everyone to know that I am NOT sponsored by 3elove, they did not ask me to do this. I just Love their products, and its close to my heart.

 I have been ordering from 3elove.com for a while. if no one knows what that is go to these few links:

about 3elove.com here you will find what 3elove is all about

and here: the symbol. here you will find my favorite part of the about us section. The symbol and what it means to the people at 3elove.com

Go on to the shop button to see what they have for sale!

I absolutely LOVE their hoodies. They are so comfortable and not cheaply made. They have Gildan and American Apparel for options. I myself like to order the American Apparel, although I do have one Gildan, just because. 3elove also has a range of colors to choose from for each hoodie or t-shirt you order. I loved them so much the first time I ordered that I ordered more for Carsyn and Todd. Next I'll possibly be ordering for my family. They may be a little pricey but is absolutely worth it.

I hope to see you guys order <3 Take a picture in your new tshirt or hoodies and tag 3elove on facebook and tell them why you love it!

They have a Proud series! I am SO excited about this line. They have proud mom/dad/sister/brother.. etc I have the proud mom hoodie <3 soon I will have a proud dad hoodie for todd and I am hoping to get everyone else one of the proud hoodies for Carsyn.

Carsyn myself and Todd all have believe t-shirts and I have a hope hoodie <3

We all love the items we got form 3elove to the point where we even got a wheelchair heart decal for the truck and love life bracelets!

I hope that you guys love this company just as much as I do in the end. This is a great way to spread the word about 3elove and what they are trying to do.

We are all doing the same thing here: Looking for acceptance in the world, and I want to help teach people about accepting these kids/adults with special needs.

" It is a symbol of society accepting people with disabilities as equals and a symbol that people with disabilities accept their challenges and even embrace them. By replacing the wheel with a heart, the stigma of the wheelchair is also removed, and it can be a symbol for people with any disability or impairment. It represents the person, not society's perception of him or her." 
                                                                                            - 3elove.com

So until next time <3 <3 <3

For a little Angel.

As many of you know, yesterday we lost another Hydran child. Brayden was four years old. FOUR. His mother, Alicia, was the first person to contact me who had a child with Hydranencephaly. She brought so many families with children like this together, she made a safe haven for them. A place for us to go and get advice, rant, or just be. So for her to lose her son is heartbreaking to me.

I never did get to meet the little guy, but he touched my heart. his story and everything he went through was something I went through with Carsyn. So in a way, his story was teaching me. I learned a lot about Hydranencephaly and what to look for with Carsyn from them. So it was a shock when I logged on this morning to find that he had passed. even scarier was the fact that he was smiley just before.

The loss of these children is a constant, and horrible reminder that we cannot keep our children with Hydranencephaly forever. It's the saddest part of this for me. Every child that passes, it's almost like my own, because we rerad each others stories, the kids weasel their ways into your heart, and when they are gone all you can do is look at your own and think. I held Carsyn close this morning and cried for Alicia. I cannot imagine the pain she is going through right now, and my heart goes out to her and her family. So this is for all of the Hydran kids we have lost. For Brayden, for Andrew. All of them. So whether you have a child with special needs, or your child is healthy, hold them close tonight, because you never know when their day will come. You never know what will happen.

My mom just said something to me that I agree with 100%.

"They're not ours to keep. They are loaned to us. To teach us. Not sure what? unconditional love? patience? Whatever it is...we were lucky enough to get one of them. Love him, squeeze him a little tighter tonight ."

No matter who you are I hope you know how blessed you are to still have your babies. I know I'm feeling this way right now.

It's always like this. We lose one, and we feel the grief like its our own, but then we look at our babies and feel lucky. I'm not saying this to rub it in to anyone, it is the truth.

I know its hard to lose a loved one, but it just hits me harder when they are children. These kids keep getting taken way too soon.

For more of Brayden's story or to donate to the Harper family visit Alicia's Journey of the Bee's Blog:

http://www.caringbridge.org/visit/braydenharper

So until next time.. Hold those babies tight. 

Make a wish

So, as you know, things in my life are almost ALWAYS crazy.
Well, things just got a little crazier.
We have started building our house.... BUILDING OUR HOUSE.
Well.. some of it. It was the barn. We cleaned it, and will be building on to it. but still. BUILDING. Me? shit..
I am unbelievably excited about this. AND I talked to the people from make a wish. Carsyn is number ONE on the Rascal Flatts wish list. That means on October 27th we will be flying out to Florida to meet them. We are unsure if they are going to sing to them, and if they don't I am allowed to change his wish. So if they decide they are too busy we will be going to Disney World. My inner child is jumping up and down squealing with joy right about now.
But, work is calling me, so I'll add more tomorrow :)

G'day Ladies and Gents <3

Rascal Flatts: Still Feels Good (Google Affiliate Ad)

UNSTOPPABLE BY RASCAL FLATTS (CD) (Google Affiliate Ad)NOTHING LIKE THIS BY

RASCAL FLATTS (CD) (Google Affiliate Ad)