I share my stories here from my heart to let other mother's know that they are not alone and that there is hope for people with CHD. Creating awareness about CHD helps countless people. Before having a child with CHD, most people have never heard of congenital heart defects, yet they are the most common birth defect in the United States. People believe that diseases like autism, Down's Syndrome, spina bifida, cystic fibrosis and childhood cancers are far more prevalent, when none are more common than CHD.
I started thinking about all the people who are affected by Kalvin's CHD in one way or another after Kalvin's most recent cath procedure. His grandparents who love and cherish him, but who often stay behind to support us at home. Kalvin's teachers - when he misses school and when he becomes more anxious than normal surrounding his procedures. His friends - who wonder where he is when he is absent from school and from events and miss him, but don't really understand where he is. His friend's parents -who are left to explain what a CHD is when they don't really know themselves! Our co-workers - who support us and cover for us when we are out of work. Our friends and extended families - who worry along with us and offer support and an ear when we need it most. People - who take the time to talk to Kal and send him gifts and cards. Thank you all so very much. Our words cannot express our appreciation for your love and kindness. Thank you. So many people affected by Congenital Heart Defects in one way or another, yet so many people still don't even know what a CHD is.
The result is a severe lack of research funding and a lack of education about CHD. We [CHD families] are trying to change that. Trying to change legislature to make screening mandatory in hospitals. Holding charity events to raise money for research and awareness. Starting and participating in support groups.
February 7th - February 14th is CHD Awareness Week. Help us spread awareness because chances are if you are reading this, you too have been touched by CHD.
Hope sees the invisible, feels the intangible and achieves the impossible.
-Charles Caleb Colton.
Kalvin 5 months |
Hi. I just found your blog and am also a heart mom. Thank you for sharing your story. I look forward to following your family.
ReplyDeleteThanks Sarah! Your photo journal is amazing. It is great to connect with other heart moms-especially of "older" boys. Thank you for stopping by and for letting us know you were here. Kristen
ReplyDeleteKristen I am not very good at texting my grandson has almost has almost exactly the same heart defects as your son. I am so happy to see your little boy he looks wonderf he is adorable and handsome. I love the marry me story pleas text me back or email me... text me back or email me at dazgoby@gmail.com my grandson is 9mo old and a ball of energy but more work to be done. praying
ReplyDeleteHi Rayne-Thanks so much for stopping by and letting us know you were here. I will email you now. I am so happy your grandson is doing well. Talk soon, Kristen
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