My last update.

 It has been a really long time since I've updated here. Unfortunately, I don't have a great update for you.

On November 7th, 2021 at 9:42 am Carsyn passed away in my arms after a three week long hospital stay. To say my heart is broken is an understatement. My entire life changed that day and I lost my best friend. 

I was 16 when I had Carsyn. We grew together. It was me and him for a long time. Even when Todd entered our lives it was still just us during the day. I spent my entire day with him, we cried together, we laughed together, we napped together... and now he's gone.

On October 16th 2021 we were sent to urgent care for what the doctors thought might be a UTI. Carsyn had been battling what we thought was bronchitis for a while and had suddenly spiked a fever and his heart rate was really high. 

thankfully when we got there they immediately sent him to the ER where we found out that he had pneumonia and a pleural effusion. It was so bad it was deflating his left lung and pressing on his heart. 

The first week in the PICU went well, he looked to be recovering. When he started getting better during the second week I told the attending they needed to get him out asap because hes notorious for catching things in the hospital the longer he's there. She did not listen. in fact she basically ignored me thinking she knew better and sent him upstairs to a new floor to make room for other patients sicker than he was. 

The hospital was full of Covid and RSV. I wanted him out of there.

Carsyn ended up back in that PICU after catching RSV. not long after that he had a pulminary hemmorage. They were forced to intubate him. and I was forced to watch. When the doctors came rushing in it blocked me in the back of the room with nothing to do but watch as they tried to save my son. Ive seen him be intubated once before but this time was so much worse. I will never get the image of the blood running out of his mouth out of my head. and as this was going on that same doctor decided it was a good time to apologize to me. Whether she was apologizing for not listening to me or because i had to watch I will never know, because i turned away from her. I had nothing to say.

Every other doctor in the PICU (aside from the woman who thought she knew my son better) never gave up on him. They moved to dialysis when his kidneys started failing. but unbeknownst to us Carsyn had also caught an antibiotic resistant sepsis in the hospital as well. We didn't get those results until 2 weeks after he passed.

We made a plan. If he wasn't going to make it I was getting in that bed. I'll be damned if my son was going to cross over without some comfort. 

Carsyn spent less than a week intubated before he left. When the main doctor told me he wouldn't make it I took the time to read him the end of the book we had been working on. I then told him what he meant to me, how he changed my life and how much I loved him. I told him I understood. He had been fighting for 14 years and he was understandably tired. 

The next morning Carsyn's oxygen levels wouldn't come above 70%. I then had to make the hardest decision I will ever have to make. Did I want them to do CPR if his heart stopped? I had been putting that decision off for days.. and we were coming down to a point where I couldn't tell them I don't know anymore. 

I told them not to. It would have been incredibly selfish of me. He had so much going on. Too much. and he had blown a hole in one of his lungs because his lungs were so damaged.

I called Todd and my mom. Todd got there first and I gave him alone time to talk to Carsyn. 

When Carsyn's oxygen started going below 60 the doctor told me it was time. I crawled into bed and cuddled him tight. Todd held his hand and stroked his forehead.  We played some Rascal Flatts and just before his heart stopped I sang You Are My Sunshine.  

He left this world with his parents at his side. He was not in any pain and he went quickly. 

I have been dreading making this update. 

Ive been ignoring responsibilities. The only reason I get out of bed anymore is for my daughter. They doubled my antidepressant and I'm maxed out on my anxiety meds...but it doesn't stop the flashbacks. I replay the worst day of my life most nights. I am swinging from irrationally angry, overwhelmingly sad, and feeling empty. It physically hurts. No one told me heartbreak can physically hurt this much. You don't understand the amount of effort it takes to go about my day. If it were up to me I'd lay on the floor and never get up. I'm trying. 

I don't know who I am without Carsyn. I'm still trying to figure that out. That boy was everything good about me. He was half of my world. He made me a better person. 

Holidays were hell. but whats worse is we finally stripped his bed a few days ago and took that and supplies to someone who would use them. THAT.. that was hard. I went to Walmart yesterday and cried because I saw the shaker bottles and personal fans. Right about this time Im getting him things like those to get through the summer. I had to Christmas shop for one child this year. 

and now all I can do is pray I never forget the sound of his little voice. Or the way he'd giggle when he'd get too tired. I miss his snuggles. Hell, I even miss his dirty looks.  I hope I did right by him. I hope he was happy with me. 

Most of all I pray Emma never forgets her brother. 

Thank you, for going on this journey with me. 

Thank you for loving my sweet boy. 

Angel Fund

HELP

I need help. A lot of things went wrong in the last year and I haven't been handling it very well. First of all the money for our van wasn't put down on the van like it should have been (we were not in charge of Carsyn's benefit money) Which made us have to take out a loan for the full amount of the van. by the time the money was put all on the van it was 2 years later and is costing us 5,000 more than it should have. So now, we have a van payment we never should have had, Carsyns medical marijuana and can hardly afford to put food in our house.

I am working a 3rd shift job. My daughter cries when I go to work and tells me not to leave her. MY kids miss me. I work until 6:30am and spend the day sleeping. I don't get to be with my kids. I don't get to spend time with my fiancee. This job is taking its toll on all of us ad I don't know how much longer I can do it.

As you know, I have no idea how long Carsyn may have left. Not only am I missing everything my 3 year old is doing but I'm missing out on Carsyn. and I don't know what to do. I need help. Because of what went down with Carsyns last benefit and gofundme the one I have up to help us (I am in complete control of this) is going nowhere. honestly I don't blame anyone. You have no idea what happened or why we still need help... Well, now you do. The people in charge didn't do what they were supposed to.

I've had my fight with them. I just want to move on now.. now I need to get this damn van paid off so I can be with my kids. We owe around 4,000 on it. that's 14 months left in payments. If anyone can help us, It's greatly appreciated. I just needed to briefly explain why we would need the help. because I think a lot of people didn't really understand what happened. nothing is too small and even share of his gofundme is appreciated.

www.gofundme.com/carsynsmeds

HELP!

We could use the help.

CARSYNS GOFUNDME

Long story short we got screwed over and now have a van payment we never should have had on top of Carsyns medical marijuana that I already have trouble keeping up with because of how expensive it is and Christmas is coming very soon and I'm drowning. I just need to get through the next few months with carsyns medical marijuana and then we should be fine. So any help is appreciated.


And if for some reason you are not comfortable with GoFundMe I do have a paypal..

PAYPAL


Thank you to anyone who helps us out or shares any of this. We are so grateful ❤

Ridiculous.

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.

TAKE CARE OF YOUR CHILD.

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

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

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