Journeys Heart page

30/07/2026

💙 CHD & Development | Attention & Focus

Children with congenital heart disease (CHD) may face extra challenges with attention and focus but that doesn’t mean they aren’t capable. Fatigue, hospital stays, medications, and lower oxygen levels can all make it harder to concentrate.

Every child learns differently, and with patience, encouragement, and the right support, they can continue to grow, learn, and succeed at their own pace. Progress is worth celebrating, no matter how small. ❤️

✨ Does your child with CHD struggle with attention or focus at school or home? Share what has helped your family in the comments we learn so much from each other.

14/07/2026

11/07/2026

💊 Sildenafil

Not every heart medication is meant to “fix” a heart. Some help it work more efficiently.

Sildenafil helps relax the blood vessels in the lungs, making it easier for the heart to pump blood. For many heart warriors, it’s an important part of managing pulmonary hypertension.

Every medication has a purpose, and every little victory matters. ❤️

💬 Is your heart warrior taking Sildenafil?

07/07/2026

This is what a healthy heart looks like.
Four chambers. Two strong pumping sides. Each one doing its own job.
The left ventricle pumps oxygen-rich blood out to the body through the aorta.
The right ventricle pumps oxygen-poor blood to the lungs.
Two sides. Two jobs. Working together.
Now look at the other side.
This is an HLHS heart.
The entire left side — underdeveloped. Too small. Too weak. Unable to do the job it was built for.
The left ventricle cannot pump blood effectively.
The aorta is tiny — barely there.
So the right ventricle — the side that was only ever supposed to handle the lungs — has to do everything.
Both jobs.
One ventricle.
Every single beat.
That is what these children are born carrying.
That is what their hearts do every second of every day — working twice as hard with half the structure.
And most people will never know it's happening because these children look just like every other child on the outside.
This is why we keep talking.
This is why awareness matters.
This is why we will never stop showing up for HLHS families.

💙 Save this. Share it. Help someone understand what HLHS actually looks like inside a child's chest.
Comment WARRIOR and we'll send you the link directly. 💙
Follow Invisible Warriors — we share the moments nobody else talks about. So no heart family ever feels invisible or alone. 💙
Click the link in our bio to donate and help families fighting congenital heart defects right now.

23/06/2026

Hello, everyone

Sorry for not posting in a long while. I re-opened this page with the intent to keep everyone updated on Journey. Then I saw something that made me pause and realize that Journey is her own person and i think in the beginning it was about walking through our life with her but now it’s about her and her life now. I want to respect her privacy and want to have a talk with her and be sure she’s ok with me sharing things about her with people before I continue to do so. I would like her to start sharing her story if she’s comfortable and updating people through her eyes.
Thank you all for following her “Journey” so far.

01/04/2026

In honor or my beautiful Journey Joy and my
Little sister her Aunt Zoe. 🩷❤️🧡💛💚💙🩵

03/02/2026

Gosh ok…. So much has happened over the last two years, So here’s a photo dump of the last two years and I’ll try to give the best brief summary my 3 brain cells can muster.

August 2024: Journey became a big sister again to another little sister. Who she absolutely adores. She definitely wanted a brother but I think she quickly forgot and just loves her baby sister so much.

September 2024: Journey started 3rd grade. She also started dance and did a ballet class. We chose to try her in a regular dance studio opposed to one more specialized for kids with special needs line was had previously done before. She did really well and absolutely loved it.

2025
Was a little bit more of a crazier year for us. Journey broke her ankle at school right at the end of the school year in June of 2025. So she spent half the summer in a cast which stunk but as always she made the best of it.
Also that June she had her feeding tube hole closed (which the tube itself had been out for a year just about but unfortunately )the hole never closed so she had to get it surgically closed which she did really well with and it was an in and out the same day procedure which is nice.

Journey had been dealing with some difficult behaviors at home not as much at school but there were some concerns. So after almost a year long wait we got results back from journeys testing that she was diagnosed with level 1 autism. This didn’t really come as a shock as I had been suspecting it for a while. It didn’t change much except I feel we can better help her get the specialized care she needed.

This past year our girl turned 9!!!!!!!!!!!’holy cow time is truly flying by.

After a long meeting and lots of deliberation the school and I decided to hold her back a grade. She was always at a grade level behind but it made sense considering she skipped kindergarten. This was a huge change for her because she also was going to move from a smaller self contained class she had been in for 3 years to a larger gen Ed class at a new school. This brought up a lot of stress and anxiety for her. She had a rough start but is doing much better.

Health wise
Her heart has been stable which is good. She is still doing every 6 month cardiology visits.
Mentally things have been a struggle. Dealing with the medical stuff itself was hard but we got through it. But this chapter has been hard. Journey had become more aware of her condition in the past year or so. It’s come with a lot of stress and anxiety for her. Unfortunately her anxiety often presents physically. She’s been suffering from panic attacks as well. She’s become aware of the fact that she gets short of breath and that it’s not normal and it freaks her out causing her to further panic which worsens it causing a domino effect. We have been working on getting her into therapy.

She also has been really struggling with her self image. She hates her scars and says they are ugly. Despite me telling her how beautiful and amazing she is, that only helps so much. It just breaks my heart I never want her to feel that way.

Other than that she’s is just amazing and beautiful and undoubtedly inspiring every single day.

I will try to update more consistently from now on. We truly appreciate all the love and support through the years ❤️

02/02/2026

In honor of heart month I am reactivating journeys page. Unfortunately Circumstances at my previous job led me to have to deactivate this account for Journeys safety. Hoping to come back and spread awareness and updates for those who have followed our Journey.