Saturday, 28 September 2013

Telling Others About Your CHD Child - by Will Paterson

Sometimes you'll stumble across a blog post and it strikes a chord with you, you feel as though this person has written down everything you've been thinking and feeling for months. You then get exited because you're so happy someone's been able to put in to words the things you haven't been able to. 
This is what happened to me on Tuesday night when I found a lovely blog by The Heart Dad (Will Patterson) His son Tommy, was born in February 2012 with several Heart Defects. This brave little boy has already been through two Heart Surgeries and will hopefully have one more in the future. His blog can be found here http://theheartdad.com/blog/
Telling Others About Your CHD Child.
By Will Patterson (The Heart Dad)

Your child has been diagnosed with one or more heart defects. On top of processing your own thoughts and emotions you have to tell your family, friends, coworkers, etc. what is happening
with your child.There are a wide variety of reactions you will see from people.  Some are surprising, some are disappointing.  It will change the way you think about some people and it will change the way some people think about you. Some people just don’t know how to react.  Others will overwhelm you with their support and generosity.
When you talk about your child’s diagnosis here are some of the possible reactions.  You’ll hear, “if there is anything I can do to help, let me know.”  Some will actually mean what they say and will be there for you.  Others won’t and will disappear when times get tough.  Some won’t want to hear about your child, they’d prefer to pretend it wasn’t happening because they can’t handle the reality of the situation.
Others will tell you maybe the doctors are wrong to try to make you or themselves feel better.  They might even think this false hope is helpful in some way.  This can be frustrating especially when you’re the one who has seen the tests and spoken with the doctors. It’s not helpful. You don’t have the luxury of denial since you have to make plans for getting your child the best medical treatment, making sure your finances are in order to pay for care, making work arrangements if you need extended time off or to work from the hospital or even another city.  For your baby you need to face the situation directly.  False hope the doctors are wrong will only prevent you from making necessary preparations, ultimately making everything more difficult.
On the other hand, you’ll have some people really step up to help you.  Some might help by watching your other kids so you can be in the hospital. They might bring you takeout when you get home from the hospital so you don’t have to cook. They might just be there to listen when you need to talk out some of your emotions.  They might help you raise money for CHD charities or even help you get by when money is tight. I’ve found there is no limit to some people’s kindness and generosity.  Throughout my entire experience I have held it together at every point, except when people have gone above and beyond helping when I didn’t expect them too. I’ll admit these are the times when I’ve been moved to tears.
You’ll see the best and worst in people.  The important thing to remember is no matter what reaction you see in people it is their reaction not yours.  You can’t change people or how they feel.  You can show them how you handle the situation and possibly inspire them by your strength, positivity and faith.
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You can follow him on Twitter @theheartdad or you can visit his Facebook page https://www.facebook.com/TheHeartDad
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