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jen sarkar | Mom | advocate | educator | real life

@carterschallenge

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jen | mom x2
rare disease & medical mom
advocate •caregiver• chaos coordinator
motherhood, unfiltered✨probably barefoot & elite shower singer 🎶

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Five years ago, I didn’t know whether I’d be able to bring my best friend home.

You see, Carter has portal vein thrombosis on top of Sanfilippo and chronic pancreatitis. Basically, blood doesn’t flow properly through his portal vein, which causes pressure to build everywhere else.

We had known about it for a couple of years; however, we didn’t want to move forward with surgery at the time because, as our surgeons and other doctors said, it would be like “taking a bat to a hornet’s nest.”

He had just had dental surgery earlier that week. We originally thought the blood he was vomiting was from swallowing blood after having his teeth worked on. However, when he had a grand mal seizure, I immediately brought him down to the hospital, begging for help.

Carter’s portal vein thrombosis had finally hit its tipping point. The pressure had become too much and caused an active bleed.

The problem was, we couldn’t figure out where the bleeding was coming from.

While in the ICU, he had more than 10 blood transfusions.

You would never know it looking at this first picture, but the night before, I thought I had lost him forever.

I still don’t like talking about it because it hits too close to home. And that’s a feeling I know, eventually, I’ll more than likely have to experience again.

I never want to experience it again.

We ended up staying just over two weeks, if I remember correctly. My mind tends to blank out or forget some of those details, almost like it’s trying to protect me.

But here he is.

My best friend.

Carter. King Carter. C. THE C-Money.

He is here and THRIVING!!

I’m just so thankful for every single day we have with him and that he is as happy and as healthy as possible.

Live today, hope for tomorrow and love like C-Money. Make every day better than the last 💜 that’s how this boy has always been.

We Love you, dude!! To infinity and beyond. Best friends forever!!

#carterschallenge #medicallycomplex #portalveinthrombosis #chronicpancreatitis #sanfilipposyndrome by @carterschallenge

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5 days ago

One less thing on my never ending caregiver to do list🙌🏼

Every month, @aeroflow_urology delivers Carter’s incontinence supplies directly to our door.
✅diapers
✅chuck pads
✅gloves
✅other supplies we already use every single day.

And the best part? These supplies are covered by our insurance, so I’m not constantly running to the store or paying out of pocket for things we genuinely need.

If you or your child use incontinence supplies, it is absolutely worth checking to see what your insurance may cover.

Click the link in my bio to see if you or your child may qualify today💜

#ad #aeroflowurology #caregiverlife #specialneedsparent #incontinencesupplies by @carterschallenge

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14 days ago

Ain’t no party like a Sanfilippo party because a Sanfilippo party means singing and no sleep 🥳

for anyone wondering why Carter didn’t sleep last night I’m pretty sure it has to do with it being a cloudy day and giving him some head pressure. Luckily, he’ll get a couple hours before we have to head to his appointment but our dude went just about 22 hours no sleep so nite nite!

#carterschallenge #sanfilippo #medicallycomplex #asmr #ditl by @carterschallenge

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22 days ago

Fresh supplies delivered every month and covered by our insurance through @aeroflow_urology um, YES PLEASE!!

To see if your insurance may cover supplies like diapers, bed liners, diaper ointments, gloves, and wipes, check out the link in my bio and see how Aeroflow Urology may be able to help you today!

#aeroflowurology #supplies #medicallycomplex #disabilityparenting #momlife by @carterschallenge

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23 days ago

POV: you finally take a chance on insurancecovered supplies through Aeroflow Urology and are pleasantly surprised!!

I’ll be the first to admit, I was skeptical.

I assumed there had to be some kind of catch, or that the quality wouldn’t compare to what we were already buying.

But the absorbency, fit, quality, and convenience have genuinely impressed me.

And having everything delivered straight to our door? Huge win 🙌

If you or someone you care for uses incontinence supplies, it’s definitely worth checking to see what your insurance may cover through @aeroflow_urology.

Sometimes “too good to be true” turns into “why didn’t I do this sooner?” See the link in my bio to see if you qualify today!

#ad #AeroflowUrology #CaregiverLife #IncontinenceSupplies by @carterschallenge

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a month ago

I get this question ALL the time, “Okay, but are the diapers you get through insurance actually any good?”

And listen, I get it. If you’re used to buying the brands you know from the store, it definitely sounds almost too good to be true!

So instead of just telling you, I tested them🧑‍🔬

And after years of buying incontinence supplies, I can tell you the things I actually care about: fit, comfort, leak protection and whether they can handle real life.

Depending on your insurance and eligibility, supplies like these may be covered through @aeroflow_urology

You can check to see if you qualify in less than 2 minutes through the link in my bio❤️

#ad #AeroflowUrology #incontinenceawareness #medicalneeds #disabilityparenting by @carterschallenge

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2 months ago

Our favorite dude went back to school this week!

He’s already got some great feedback from his teachers, therapist, and of course his aids 💜

We know he is in GREAT hands and we cannot wait to see what this year brings for him 😊

#backtoschool #carterschallenge #smilesallaround by @carterschallenge

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2 months ago

Hope your apology is as loud as your disrespect was.

Funny how some people mistake kindness for weakness. Protecting my son will NEVER be something I apologize for. And I have ZERO problem making a scene in public if you’re going to be disrespectful.

Will I look like the village crazy lady? Maybe. But 9/10 times, my favorite thing to do is act like I genuinely don’t understand what they said or what they meant by it and make them explain it to me.

“Wait, what do you mean by that?”

“No, I heard you. I just don’t understand. Can you explain it?”

Pure cinema 🍿

Because they NEVER expect us to actually say something. And funny enough, once they have to explain themselves out loud, the apology is usually a whole lot louder than the disrespect was in the first place.

K love you have a wonderful, spectacular day 😘

xoxox
jen

#sorrynotsorry #nonverbal #sanfilipposyndrome #disabilityparenting #carterschallenge by @carterschallenge

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2 months ago

I mean damn, wouldn’t that be nice if an essential oil was the cure?!

#sarcastic #humor #carterschallenge #sanfilipposyndrome by @carterschallenge

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2 months ago

Let’s learn something new today 😊

OK, let’s be honest… most of our besties probably already know all of this. But if you’re new here, hi! Welcome to our little corner of the internet 👋

Meet C-Money💜

Carter is 14 years old and has two rare diseases:

1. Sanfilippo syndrome (often called “childhood Alzheimer’s”)
2. Chronic pancreatitis caused by a rare CTRC gene mutation

Because of these conditions, he’s medically complex, has a compromised immune system, and has a very long list of doctors, appointments, and medical challenges.

We share our story to inspire others while advocating, educating, and raising awareness for rare disease, disability, and inclusivity💜

We also love to laugh and have fun around here… but fair warning: C-Money occasionally has a potty mouth—He definitely gets that from his mama 🤣

Some of Carter’s favorite things:
🧜🏼‍♂️ Swimming (I’m convinced he’s actually a merman.)
🚶‍♂️ Going on walks
☀️ Playing sports and games outside
📺 Watching his favorite shows
🤣 Making people laugh
🏖️ Beach days
🐒 Visiting the animals at the zoo
🦕 Dinosaurs
🍽️ Eating (always!)
❤️ Spending time with family and friends

If you haven’t officially become one of our besties yet, we’d love to have you!! Feel free to ask us anything! Comments are usually the best place so others can learn too, but our DMs are always open.

Our hope is that when you leave our page, you take a little bit of C-Money’s joy with you… and maybe even learn something new along the way💜

xoxo,
jen

#sanfilipposyndrome #caregiverlife #medicalmom #carterschallenge #chonicillness by @carterschallenge

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2 months ago

Being a caregiver means you’re always planning ahead, especially when it comes to the essentials. My sh*t happens bag comes everywhere with us, and one thing that’s made life so much easier is having Carter’s monthly incontinence supplies arrive right at our door.

I know firsthand how overwhelming caregiving can feel, and so many families don’t realize their insurance may actually help cover these supplies.

That’s why I love working with Aeroflow Urology. They help determine whether your insurance may cover incontinence supplies and, if you’re eligible, they’ll ship them directly to your home with helpful monthly reminders so it’s one less thing to think about.

Caregiving is hard enough. Anything that helps lighten the mental load is a win in my book💜

If you care for someone who uses incontinence supplies, check the link in my bio to see if you may qualify.

#aeroflowurology #specialneedsmom #caregiversupport #reallife #tipsandtricks A mother and son sitting and playing in the sand at the beach as a wave comes towards them. by @carterschallenge

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2 months ago

Ten years ago, just days before his 4th birthday, C-Money was diagnosed with Sanfilippo syndrome.

Back then, there wasn’t much information, even through it was discovered in the 1960’s. We were told most children with Sanfilippo only live into their mid-to-late teens.

Carter is now 14 years old.

He still walks independently. He still eats by mouth. He has dystonia and has become nonverbal, but he is still here!

He’s happy.
He brings joy, laughter, and pure chaos everywhere he goes.

If I could tell another parent just three things, it would be this:

💜 Anticipatory grief is a bitch. Don’t let it steal the beautiful moments happening right now.

💜 Celebrate everything. Every smile, every word, every milestone, no matter how small. Those moments become the memories that carry you through the hardest days.

💜 Capture everything. The ordinary moments become priceless. Hearing an old video of Carter saying “Mommy” or “I love you” hurts in ways I can’t explain, but I’m so grateful I have them.

Sanfilippo has taken so much from C-Money and our family, but it hasn’t taken away the love, the laughter, or the life we’re still living.

If you’re walking this road or one similar, know I’m sending you the biggest hug 💜

xoxox
jen

#navigatingaterminaldisease #sanfilipposyndrome #captureeverything #inmyfeels #carterschallenge by @carterschallenge

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2 months ago