Wednesday, November 22, 2017

I can't keep a secret... at all

So I already spilled the beans and plans are already set in place so I can't actually keep it in. I have a couple secrets to tell....


I posted a while ago about getting Carsyn a puppy, we can't get funding for a therapy dog, I looked all over to find him his own lifelong fur friend, with no luck. This last week I posted in a couple of groups about it... and a woman by the name of Tammy took notice. She started helping us find more people and posting more about it trying to help us.

Then I got a message from a man named David and his wife, Megan...They are donating a GSD puppy to Carsyn. Dad is a wonderful therapy dog and they even offered to give me pointers on training her. So we know she comes from a good line of caring GSD's.

Then I received another message from a woman named Danielle Huntley... She and her family are donating a converted van to Carsyn..

I cannot even begin to explain how much this means to us. We have been fighting for so long. They could have scrolled by and not done anything.. But they chose to read Carsyn's story and learn more..and help... and I cannot thank them enough. I am forever going to be grateful to these people.

but what they didn't realize was that They also gave me another gift though.. So far, there was enough money saved from Carsyn's gofundme for a months worth of medical marijuana..

Now that I don't have to worry about a converted van that money and the little I had for a puppy can go for next months medical marijuana.. They gave me a month of not worrying about having enough. I don't have to stress about Carsyn's medication next month.

I would like to thank those people, from the bottom of my heart. I will never be able to repay you, or tell you how grateful I am. But you are changing our lives and I don't even think you realized how much.

What a Christmas gift to give.

<3 this pretty pup will be coming home with us Friday


Monday, November 20, 2017

Stupid phone. Stupid month.

So...if you didn't know, my phone decided to reset itself to factory settings in the middle of the night. I lost everything. my contacts, my photos. everything I had on my phone was gone.

Samsung was able to get some of my photos back, but not all and absolutely 0 contacts were able to be retrieved.

 I am so sad.

I lost all photos from December 2016 and back. No more photos from the day Emma was born, no more photos from my hospital stay when I was pregnant. Nothing from 2015 at all.

I feel like things were ok for a while, and now things are just piling on top of me.

For instance, I get paid every two weeks, and more than half of my week last paycheck was put into the system too late, so I got it in my paycheck on friday. Which, awesome BT helped me save 200 USD for Christmas shopping!

So, I went christmas shopping for my kids and got them things they have either really wanted, or definitely needed.... Then I receive a child support payment, which ALWAYS goes for Carsyn's medical marijuana. His SSI, Child support and a some of my pay goes into getting it each month because I definitely can't afford to only rely on my pay to cover the rest of it..

The child support payment was 30 USD.. normally in a month Carsyn gets almost 300 USD and I make up the rest, but this month I won't be getting more than that 30. So now, because I thought I would be ok, I'm 270 USD short on Carsyn's medical marijuana and will have to skip going to Syracuse this month to get it for him because I cannot afford to get it.

So now, Christmas is coming up and I'm not even done yet, I have a few more things I need to get for the kids, I can't get his medical marijuana, my phone is a piece of crap and the tires on the van keep going flat and need to be replaced, the heat in our bedrooms still isn't working because we need to fix it and its getting cold here, we're using space heaters in the back bedrooms and now I get to freak out because THANKSGIVING IS NEXT THURSDAY. These freaking holidays are sneaking up on me and I can't keep up with everything that's deciding to go wrong on me.

I'm just frustrated.

Just breathing is giving me anxiety. Like this month has sucked.

So if you could help, that'd be great (for Carsyn's medical marijuana, not the other stuff, that's my own problem) sharing this link to the gofundme helps too. I appreciate all who have helped so far, and all who consider helping in the future, and also all who have shared. It means a lot that you all care so much.

Carsyn's GoFundMe

Thursday, November 16, 2017

Non-verbal Doesn't mean Stupid

About 3-4 years ago, as we were talking about having another child (since ya'll know we can't get married, see my last post if you didn't know) A therapist made a comment about it being Todd's first biological...

Todd and I had made the decision that Carsyn did not need to know about Todd being his step-dad as his biological has not EVER wanted to have anything to do with him (unless he was trying to impress a girlfriend or his now wife. He liked to pretend he wanted to see him but never followed through).

Carsyn had no idea he was not biologically Todd's child. He was too young to remember Todd entering his life.

Maybe some of you won't agree with that.. but remember, Carsyn is not your typical functioning child. My whole thing was explaining this to him knowing that he can't ask me questions, he can wonder why his biological doesn't want anything to do with him, why he doesn't see him, why he doesn't love him like Todd does and I would have no idea.

Now my relationship with my father is a ton better than it used to be. We talk at the very least text each other to see if everything's ok once a week. but as a child I often wondered those same things if he wasn't around.. This post is NOT about my childhood and my relationship with my father, I was just showing that I know those thoughts well, and I NEVER want either of my kids to ever feel that way.

So Carsyn can be having those thoughts and I wouldn't know... because and let me spell this out for you:

NON-VERBAL DOES NOT MEAN HE'S STUPID.

He understands when hes doing something naughty, in fact he thinks it's hilarious.

Last Christmas when he was up until midnight waiting for Santa I had to tell him if he wasn't sleeping in the next half hour Santa would have to skip our house... He was asleep 10 minutes after I said that.

He shows me every day that he knows whats going on, he understands whats going on.

I tell him that the biological part doesn't matter, it's not important. but how do you keep telling someone that when that's all anyone ever brings up? It is brought up at least once a month with therapists even though it's not their business... I've had family from Todd's side do the same thing.

If you ask Todd if Carsyn is his, he'll say yes with no hesitation.

Why is it that this is something people have to bring up?

Just stop. It wasn't your news to share and it's not your news to talk about.


Carsyn's GoFundMe





Saturday, November 11, 2017

The government is great, huh?

So, I get a lot of questions (mainly from family) about my relationship with Todd.... Mainly:

"when are you gonna get married?"

"Are you going to get married?" 

"Why aren't you married yet?"

And the answers are:

we're not. no. and, we can't.

Let me explain.

A few years ago we found out that if we are to marry, Carsyn will lose everything. He'll lose his SSI benefits and will no longer be eligible for his insurance. We CANNOT afford for Carsyn to lose anything. We already struggle to get his medical marijuana and put food on the table. Todd has a full time job and I'm working 2 part times just to be able to do so AND still give my kids a Christmas.

I know there are going to be people pissed off that that's the reason why we aren't getting married. That were "abusing the system" but let me be clear. The system is set up for you to fail anyway. We are damned if we do and damned if we don't. We aren't thinking of ourselves here, we're thinking about CARSYN and CARSYN ONLY. 

So if you're going to be pissed about it, be pissed but don't put me down for making sure my son is cared for in the only way I can make sure he is. because let me be very clear here. I'll even put it in bold and all caps if it helps you to understand:

CARSYN WILL DIE WITHOUT HIS INSURANCE OR SSI

Got it?
Without his insurance there is no way I can pay for his hospital stays, his surgeries, his MEDS. Even with co-pays. and without SSI we can't afford the meds insurance doesn't cover and the trips to Rochester, Buffalo, Erie and Syracuse. and again, without those trips to see his doctors HE CAN DIE.

I don't know how to put it any clearer for you.

This was one thing I couldn't give Todd's dad before he passed. HE wanted to see Todd and I married. and it hurt like hell not to deliver on this.. but I can't do that to my son. and he understood.. at least I hope he did.

I'd love to marry Todd, but I can't. Because with the both of us married we'd make just under 300 USD too much. 300 USD that go to Carsyn's medication and doctors trips.

So thanks for understanding, and if you don't:
there's an unfriend button on my facebook profile page, feel free to use it.


Carsyn's GoFundMe

<3

Wednesday, November 8, 2017

My Emma

I know that this blog is about Carsyn, but I'd like to talk about a very big part of Carsyn's life: His little sister.

Emma Leigh Jenkins was born on September 15, 2015 and she was a little devil before she was even born. This girl caused me so many problems in my pregnancy. My body already has a hard time handling pregnancy, but this girl took it to another level.

I was hospitalized in June/July 2015 because I was already dilating at 19 weeks. But then Emma flipped over.. She regularly did that, she was very active in there. Every week we went in to get a sonagram She had flipped. but this time she was sitting on her umbilical cord. So had I had her, she wouldn't have been able to breathe.

I was in the hospital for two weeks before I took myself out AMA. In there I found out I have anxiety (which I was not surprised about) but also PTSD associated with all the crap Buffalo Children s put us through with Carsyn. So they had to put me on Ativan, Ambien and benedryl just to keep me calm and for me to sleep. Otherwise I was crying and having anxiety attacks.. At one point Todd told the doctor "This is not the woman I dropped off here 2 weeks ago" My dad called me and thought he had the wrong room. I didn't sound like myself. I didn't FEEL like myself.

So I came home on strict bed rest. I made it to 36 1/2 weeks with this girl before she decided she was coming.

From the start she's loved her brother. He was the only person she would kick for while I was pregnant. Just him.

Once she was born she loved cuddling him.. and at 2 years old she helps me get him out of bed, get him in bed and lets me know if he puts his head down in the car. She kisses him and tells him she loves him about a million times a day and loves to just be near him.

She tells on his therapists when they do something she thinks hurts him or they shouldn't be doing.

She is so protective of her big brother..

I didn't realize how much we needed her until she came along. She's the missing piece we've needed for a long time. It wasn't just Todd and myself that needed her, Carsyn did too. and he loves her to pieces.

He still gets annoyed with her like all sibling do, but these two have a bond no one can ever break. <3



















Sunday, November 5, 2017

Terry.

I would like to note that this post sat in my drafts for a while before I decided to upload it. I was debating on and off whether to put it up or not as I don't want to get anyone from the family upset.

Todd's dad passed in June. He shut off his LVAD (click here if you need to know what that is) at home and got to pass with his family surrounding him.. I did not get to see him that day. and I never got to tell him how I felt.

My kids did not need to watch their grandfather pass. So while Todd was here with his dad, I was with the kids.

Which makes sense, because that's his father, and he needed to be here. I just wish I had had the chance to sit down with him alone and tell him how much he meant to us.

He completely accepted Carsyn. He loved the hell out of him and oh my god did Carsyn adore him. He got Carsyn to smile every time he saw him. Every single time. He always talked to him and played with him however he could.

You know what he told me when we told him we wanted to have a baby?

"As long and Carsyn isn't treated any different"

and that meant so much to me.

you couldn't help but love that man.

Pain in my ass...walked in on me in my underwear, picked on me for being polish, told me jokes so much that I never really knew when he was telling me the truth until the end of the story and scared the piss out of me at times..


but I loved the hell out of him. and I hope like hell he knew that.

Unfortunately I could't get any picture of him with Carsyn before he passed. and that's another thing I regret.. Not taking enough pictures of him with my kids and Todd.

So I'm going to leave you with something that was 100% Terry all the time. I asked Todd's sister to send the video to me just so we could play it back when we needed to hear his voice.











Friday, November 3, 2017

Medical Marijuana

Since the day Carsyn started Medical Marijuana his life has changed for the better.

He went from 8-10 seizures A DAY to 1 the month he started... then none for 6 months. We have breakthroughs here and there but he has no where even close to the amount of seizures he was having before.

Now here's what sucks.. We started off paying 1000.00 USD A MONTH for this. Then it went down to 850, now its just under 700 USD not including travel expenses, since we're driving three hours to the nearest trusted pharmacy for pediatrics. 

The expense is what kills us. We could be completely under control if we upped his dose, but I'm already working 2 jobs and have  hard time putting groceries in our house. We need some help. The gofundme was not only for converting our van but also helping with medical marijuana for Caryn to keep him seizure free.

Guys... He's so happy on this. He's started kicking and screaming and laughing and cooing again. He hadn't done that in so long that I forgot what his voice sounded like. We've been doing this around a year and a half now. and I can't stop getting this for him. He's off 2/3 doses of one of his benzodiazepines. that's really good considering they thought he'd never get rid of one. We're currently working on getting him off his Trileptol as the side effects are horrible.

So as we decrease these medications, I'll have to increase his MM.. I can use all the help I can get until they drop the price some more and make it easier for us to afford it.. I know that this isn't very long, and its my second post today but this was important for me to share with you. This isn't just me saying oh donate so we can afford a vacation, this is me asking for donations to keep my son on a medication that has helped him more than any other medication ever has.

THIRTEEEN medications... that's how many we've tried and failed to control his seizures with.. he's been on 12 of them all at the same time in the hospital with no luck.


This is literally just me asking for help making my child's life better for him and keeping it that way. He deserves it. God, he deserves to be happy and seizure free.



I want to thank anyone who has read and shared my blog, Carsyn's gofundme and donated to it. You don't know how much it means that you support us. also, yes it is being organzied by Todd and not myself. It's the only way I could get Carsyn the help without him losing his insurance, it most definitely still goes straight to Carsyn's needs

 We are so grateful for each and every one of you. <3