Tuesday, August 18, 2009

Grandma's have heart - Starting over

I started my blog a few years ago to offer support to grandparents and relatives of the parents of heart babies. I thought I'd send out an updated version of my first blog, in case there are some families that are new to CHD and or DiGeorge Syndrome. If so, please let me know if there is anything I can do to help, or if just want to vent to someone who will understand.....

Hi, I am hoping there might be a grandma, grandpa, aunt or uncle out there who is living with the reality of a grandchild (niece or nephew) with CHD and wants to talk about it. My little guy was born with interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He is the bravest person I know.

Last June Drew had his 3rd open heart surgery at Stanford University followed by a 6 week hospital stay. He is now 5 years old and just finished his first season of tball and about to start soccer!

When life wasn't as good as it is now and Drew was hospitalized so many times with pneumonia and other issues related to his immune system, I felt so alone in the world. His parents, my daughter and son in law, could not be doing a better job raising him and his 3 year old sister. However, knowing the agony and fear they lived with every day, I tried my best to keep my own anxieties and heartbreak to myself. It can be very hard to be the strong one and to offer encouragement when your own baby is experiencing what no mother should ever have to. I guess you could call it double agony. It is very hard to keep all these feelings inside, while trying to be strong for your own child. there aren't many people who can really identify with what I went through and will always go through to some degree, but I know you can if you're in this situation and I'd love to talk about it to you, if it would help. It is hard to be the mother of a mother with a heart baby. Its hard to see her cry her eyes out over other heart babies that she knows. Its beautiful to see her help them and reach out to them and watch her give them her support, though, and I'm wondering if I can do the same with other moms, dads, and relatives of special children like mine who have special children of their own.
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