Friday, May 11, 2018

Carsyns youcaring

Anything helps.  We could use it. Thank you to everyone who even considers it. We appreciate it so much.

Youcaring donations

Thursday, December 14, 2017


I have to rant about something for a minute.

I've been asked many times for advise. Especially when it comes to kids like Carsyn.

Now, if I give you the advice, and you tell me you don't know what to do so I go out of my way to get you everything you need to take care of your child, I get you doctors address and phone numbers and tell you exactly what to tell them to get that baby in faster and you don't listen?

In situations with Kids like Carsyn not seeing a doctor and not taking care of the issue is life or death. 

If something happens to that child that's on you. 

Hydrocephalus puts pressure on the brain. Pressure on the brain can then cause them to have issues with breathing and motor skills and so much more. Pressure on the brain CAN KILL THAT BABY. 

and you aren't doing anything about it.

Don't play the woe is me card and then when you get help, ignore it. You can't just wait this out. This Doesn't always just sort itself out. 

If your child is already showing signs it's having issues and YOU'RE STILL IGNORING IT?! Then in all honesty, you shouldn't have that child.

Get mad at me for making this post, go ahead. because if this strikes a nerve, then you know you're doing something wrong.

No one should defend not taking care of your child. NO ONE.


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:


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:


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


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