World Championships in Obstacle Course Racing is getting closer.
65 days of hard work, discipline and dedication awaits.
Thx to @toughestlab for best possible training and battleground to get ready for @ocrwc 👊🏻
#toughestlab #putinthework #gettingready #ocrwc #gym #training #workout #ocr #obstaclecourseracing #hinderbana #ocrathlete #runner #crossfit #fatheroftwo #chd #congenitalheartdefect #beatyourobstacle #competitor #toughestcertifiedtrainer #fitfam #fitness #healthylifestyle

She is my super hero born with a CHD.
She has been experiencing uncomfortable palpations and an occasional fast heart rate which is also known as tachycardia.
Her pediatrician referred her to a different cardiologist. That allowed her to be seen quickly. He explained so much.
She was sent home with a heart monitor to wear for a month. Getting closer to finding the cause of her symptoms.
Please keep my
lil Warrior Princess in prayer...
#chdawareness #1in110 #heartwarrior #atrialseptaldefect #chdaware #svt
#congenitalheartdefect #papvr #heartmom

Turn sound on loud for happiness! These little videos make my day! @femulcock sent me this today while I was at work. With the worry of the upcoming heart surgery her smile and little laugh make everything better! #upsyndrome #downsyndrome #avcanaldefect #laughing #babylaugh #happy #congenitalheartdefect #love #completeavcanaldefect #cavc

Needed to see this tonight.. so just in case someone somewhere needs it to 💞
Had my sister tell me all of the things that she thinks I am and that I do. Lazy, attention seeking, faking pain, faking being ill, faking it when I need medical attention. That #ehlersdanlossyndrome doesn't exist and I'm making it up. That I don't deserve to be happy. That I'll never be a doctor. That I'm a waste of space. Yes, my sister said all of that. Afterwards I started bawling, because my own family doesn't and never will understand me and they don't even care to. Then I realized, what am I crying for? Sure she's my sister, but I don't need her. In all honestly, I've never needed anyone. I was taught young how to be stone cold and self reliant. So that's exactly what I will be. Just because I'm ill doesn't make me any less of a human being. I deserve to be here and I deserve to be happy. But I've come to realize, not everyone deserves to share in that with me. And that's okay, I'll find my people one day.

#quote #words #jraymond #mentalhealth #Health #bipolar #PTSD #ana #edrecovery #selflove #congenitalheartdefect #gastroparesis #interstitialcystitis #hidradenitissuppurativa #chronicillness #invisibleillness #spoonie #spooniestrong #warrior #hope #faith #therapypet #ilovemydog #ilovemycat #artist #medstudent #goodvibes #positivevibes #positivevibesonly

Meet Jeff, co-founder of Josephine’s Village, a key team member on our 5K planning committee, & Josephine’s daddy... “I met Josephine in the hospital with a stomach full of butterflies. The first moment I got to hold her in my arms changed everything for me. My understanding of what love is had just changed entirely. She was my whole world in that moment. We soon developed our own secret hang out time - watching hawaii volleyball on youtube long after mommy was sleeping and when Jo just didn't want to nap. She had me totally wrapped around her finger as she insisted that I bob & dip and never stop moving as she rocked off to sleep while cheering on the wahine. I knew even then that those moments would be special to me for the rest of my life. To me, she could see me and accept me and love me without ever even saying a thing. It was just the way she would get comfortable in my arms that I knew she could feel how much I loved her and that I would do anything for her. ❤️As her dad I wanted to stay strong and positive at each doctor's visit, assuring her that soon we could go home and see Cooper. Part of me was always scared, but I wasn’t about to let her know that. I was so proud of her always, through all of it, but the night before she came off ecmo was incredible. It was like she could feel my desperation through that tiny little hand as I held it and told her over and over how “you got this - you can do it” & “just keep fighting for me and we will go home soon” each hour as the tests came back and she held strong like never before. Again, she gets me. ❤️Now, I understand that she was telling me to be strong and to not stop fighting and to keep going. So for her, I will keep doing what I can to help the next kid and family to fight through this epic CHD struggle and make it home. ❤️Being part of Josephine’s Village and this 5k is the biggest honor and something I am so proud of as Josephine’s dad. I believe in its mission and I am determined to help move this cause forward. So watch out, Josephine’s dad is motivated to make a difference. I just know she is cheering me on saying right back to me “you got this Dad” & “just keep fighting and I will see you soon"

have you ever dreaded something? like wish you could do anything at all to avoid it or run from it or simply not have to live through it? like “intubate me, put me in a pentobarb coma for a few days and then wake me up when it’s all over + don’t ever remind me what just happened” kind of avoidance? next monday is that {something} for me. weston’s due date. the thought of it takes my breath away, rattles my bones, gets my heart racing. all i think about is what might have been with my baby. how the world keeps turning and he’s not here but he should be. life is so hard these days. pray for us, will you? •
“If you’ve been marked by what might have been, you don’t forget. You know the day, the years. You know when the baby would have been born. You know exactly what anniversary you’d be celebrating, if the wedding had happened. You know exactly how old she’d be right now, if she were still alive. You’ll never forget the last time you saw your child, or the last time cancer was a word about someone else’s life, or the day that changed absolutely everything. It makes the calendar feel like a minefield, like you’re constantly tiptoeing over explosions of grief until one day you hit one, shattered by what might have been.” — Shauna Niequist

“Was bin ich unter diese
Unendlichkeit gelegt,
duftend wie eine Wiese,
hin und her bewegt,
rufend zugleich und bange,
daß einer den Ruf vernimmt,
und zum Untergange
in einem Andern bestimmt.”
One chilly evening hiking around Kindelsberg with a great friend, enjoying the clean crisp air, bellies full of schnitzel and beer. To go back to this day would be an absolute dream come true. To be healthy again, free of worry, and to posses a sense of adventure, that’s what I crave again. #kindelsberg #kindelsbergturm #germany #sauerland #krombacher #deutschland #adventure #hiking #village #springtime #spring #friends #freunde #germangirl #trees #nature #village #chd #chdaware #chdwarrior #chdsurvivor #chdawareness #congenitalheartdefect #congenitalheartdisease #openheartsurgery #openheartsurgerysurvivor #optoutside

We were incredibly brave today and took all the kids to the play area in the mall. My husband and I were sweating by the time the kids were done playing. Trying to keep up with four toddlers is so easy task.
#szafranskiquadruplets #quadruplets #playtime #lifeofdad #lifewithkids #lifewithatoddler #family #familygoals

Lucy is officially a big girl 😂! We pulled out the bouncer, unsure if she would have enough core strength to do it, and welp, she sure can (plus she loves it)! Lucy only lasts for a little bit at a time in it, and as you can see in this video, because she starts to get exhausted after about 5 minutes of playing. But we love how this makes her put a little bit of weight on those EXTREMELY floppy legs! They look so skinny in this thing 😱. Wahoo, go Lucy girl! 💪 ❤️ #extremelylowmuscletone
#downsyndrome #downsyndromeawareness #joubertsyndrome #13qdeletion #downsyndromelove #nothingdownaboutit #congenitalheartdefect #openheartsurgery #zipperclub #heartwarrior #sleepapnea #lowmuscletone #t21 #trisomy21 #theluckyfew #dsdn #upsyndrome #changingthefaceofbeauty #bilateralhearingloss #hearingaids #fisherprice

This morning Lainey had her last cardiology appt before surgery 😬 it’s surreal that it’s finally here and we have a countdown. I’m ready for her heart to be fixed and for her to feel better, but I’m not ready for the journey to get there. Every time i talk about it i just get a lump in my throat to be honest. Shes expected to be under the knife for 5.5 hours. I asked her doc if everything goes as perfect as possible, how long will she be in the hospital? She told me a minimum of 10 days. That’s so minimal to some, but it sounds so long to me! I’m grateful we’ve made it this far before surgery needed to be done! I thank God for doctors and medicine, and as scared as i am, i have full trust in her surgical team! Please pray for our sweet girl that she stays healthy leading up to surgery and that through surgery and recovery, she soars! Thank you!❤️

ES UNA FUNDACION SIN FINES DE LUCRO ASOCIADA CON INTERNATIONAL CHILDREN’S HEART FOUNDATION, GIFT OF LIFE, ROTARY INTERNATIONAL Y ROTARY CLUB SANTO DOMINGO ❤️ Nuestra pequeña heroína de corazón ya pronto estará en su casita con su corazón reparado! ❤️❤️❤️ #congenitalheartdefect #cirugía #unetuslatidosalosnuestros #fundacionlatiendoporti @ichf_babyheart @rotaryinternational @rotaryintrd @goli_intl

My story was shared by the international 22q foundation! I just had my 22nd surgery yesterday. They put in ear tubes to help drain my ears since I’ve been getting reoccurring ear infections. It was very minor but my ears hurt. I’m proud to give people hope and bring awareness to chronic illness! 😀#chronicillness #22q #22q11deletionsyndrome #22qawareness #vcfs #congenitalheartdefect #congenitalheartdisease #spoonie #spoonielife #heartwarrior #immunesystem #hearingloss #surgery #raredisease #illness #chronicillnesswarrior #youdontlooksick

Every day is one day closer to coming home! We are so proud of our little warrior ❤ #mightymax #heartwarrior #chdwarrior #congenitalheartdefect

One of the less serious but very special donations that Heartlink give to Glenfield is to provide lots of play and sensory equipment for all of the patients on the ward. When we were there some of the older kids had amazing mobile light sensory units that would come to their bedside to help stimulate them whilst they were in hospital. As Theo was mainly sedated or sleeping for most of his time in the ward, he didn’t benefit from what the play team offered but we did… at 2 days old we got his first piece of art, a gorgeous print of his tiny little foot 👣 .
Almost every day on PICU we’d find other little treats by his bed that the team had done to help make our time there easier and also to give us some memories of his time there, including a diary which I’ll share more of in future posts. .
Whilst only small things, they really helped to lighten our days and such a thoughtful use of the money Heartlink raise ❤️

We (rightfully) call this the "ready for cuddles" outfit! 😍 This and other fun heart outfits can be found in our Everyday Heart collection on our site! #perfectforfall #chdwarrior

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