I had gotten to the point of enjoying entire days without thinking of CHD until a few days ago. It reared it's UGLY head back in my life. My heart breaks for these families that have recently lost their children. Please keep them in your prayers.
One is Allie, we met her parents in the hospital when we were there with Alexa back in Februray. Yes, in February! They have been there all this time. Allie fighiting one thing after another ~ such a brave and strong baby girl! Last week she was sitting on her mommy's lap smiling, looking like she might finally get to go home. She then turned very septic and today I read she passed away.
My heart also aches for Bryce and his family. A 13 year old boy waiting for his 2nd heart transplant. All he wanted to do was be in school and hang out with his friends. Instead he enured many long hospital days, strokes and organ failure and has now sadly passed away.
I has also recently began to follow Chrissie's journey. A precious little girl that has endured way too much for her short age. As I read her mother's blog I was brought to tears by her relating the story of her needing to get off ECMO and telling her daughter to fight while Chrissie although suppose to be sedated from drugs had tears rolling down her face. She has also sadly just passed away.
Please pray for these families as they must endure this unimaginable pain and loss.
I HATE that CHD can do this to children and families! I HATE that it cannot be cured now! I HATE that you never know what complication can arise!
It is just a reminder to enjoy each day to the fullest and love and enjoy your family today like it were your last.
Hang in there! I know how unfair the CHD world can be! I HATE it too! It breaks my heart to hear when another CHD Kiddo or Adult passes away! It NEVER gets easy! It's even harder from my perspective because I am the one living with a severe CHD, the one who has to hear the bad and the good and know that it's my life on the line, not my parents. It's super hard both ways parent or patient, but honestly all you can do it take things one day at a time and live life to the fullest! And sometimes stepping back from the CHD world helps too! We cannot control what happens, but we can try to find positive things and happiness out of hard times!
ReplyDeleteSending you LOTS of Hope, Love, and Faith,
Lauren (22yr. old w/Tricuspid Atresia, HRHS... or simply put: Half a Heart and Living to the Fullest!)
Blog: www.laurensheart.blogspot.com
Agree. That's it...I completely agree.
ReplyDeleteOh...and you have a SUPER beautiful family.
That's it. :0)