"We don't heal in isolation, but in community." - S. Kelly Harriet
CCHD-/ FONTAN FAMILY MEETING
Once a year, I am able to meet other Fontan patients and families with Fontan kids.
One year ago, there were this family meeting from my heart association @fontanherzen_e._v._ at the north east coast of Germany. Everything and everyone was a little bit new for me. Bit this year I had the chance to join this meeting again. People who I met last year turned into friends, families I accompany on their path, became a huge part of my CHD-family or friends. Since Thursday I have been there to meet them and new families and Fontan adults to support, listen, care and be the one who is supported as well.
Again, we listened to a lot of speeches and presentations about different subjects which are important to know if you are effected by a single ventricle heart disease. Having a Fontan circulation is a rare type of heart disease so we have a lot of special themes and needs: people who have half a heart but also family members.
One time a year we meet each other to get support from all over Germany to learn about our disease how we can improve or at least stabilize our conditions and to refill our emotional and physical energy levels. I am more than just thankful for opportunities like this, because I embrace them with all of my half a heart and lock the new gained energy in deep inside of my soul.
Thank you to everyone who I have been able to talk to but especially for the organization team. Without them, this wouldn't ever be possible. You rock the zipper scar club the right way!
So we heal a little bit when we realize that we are not alone and that we are loved, the way we are, from all over our half and whole hearts. Love from my single ventricle crew to you. #familystrong#fontanherzen#charity
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This weekend in RealKids we made announcements to share the Good News with our friends! #familystrong
The head man in charge also known as my Grandfather has passed away. He's been fighting for a very long time & now he's moving on to Heaven. Y'all pray for my family 🏾🏾. #RestInPeaceGrandpa#FamilyStrong
I know I should be sleeping, but the after hour was open ?? we doing all the above.... Eating running up a check... Anytime any day, we smoking that gas: sipping great... Dodging the Jake's... That tea cup.... Never have us draped.... Got bad bitches... Like here daddy have a grape.... Traveling!!!! It's 2:15...In Paris, in Cleveland it's a half pass 8:00. Y'all niggas need to get out of the State.... Since it don't cost,ShHHit... I guess that's what allow y'all du hate.... Ohh somebody stop me!!! (They Can't)... Why??? Nigga I'm astounding.... I'M GREAT!!!!. Nobody bet not still my bars Just clowning.. Lul nigga Lul nigga.... Get Better goals is the message tho.... It's more than shooting up playgrounds... Nigga we all got children.... However with that said I got to choose my over yours #familystrong...#shalecity#therealGottiGang#defendtheland..... Look at the sign behind me... That's what we do it for...
Our earthly loss is always a heavenly gain
Although our hearts hurt and mourn in humanly pain
The fact still remains the same
That Heaven Has Gained more Love
To sprinkle down from above.
Rest in Paradise Dear Aunt Bell! 🏼 May the peace that passes all understanding comfort our hearts draw us closer to thee 🏼 #LoveAndLight#roughweek#FamilyStrong