Saturday, February 12, 2011

This Heart Momma's Top Seven - #2 Support

Support - My lifeline as a mother to a CHD child. To know you are not alone in your journey, and being able to share stories, encourage one another and know that they "get it" is a huge blessing.  These forums also provide a behind the scenes, "been there, done that", look into the various aspects of life with a CHD child.  I have shared many a milestone, encouragement, advice and worries through these outlets.  We are a tight knit group of women (mostly...but please speak up if you're a dad on here, we want to hear from you too!), but have open arms to welcome.  No one wants to be a part of this "club", but I am truly thankful for all the friends and support I have received through various sources as they have blessed me beyond measure!

So, without delay, here are my top sources for support, encouragement, love, hugs....etc.!


Where was I before blogland??  Wandering around in my google nowheresville searching for other like me.  I started blogging a few days after Liam was born, simply to keep friends and family updated on Liam's status and help to document our journey.  During Liam's second surgery, a dear blog friend , Stef, reached out to me and offered lots of encouraging messages during that time.  That was the first time I realized there was a "blogland" for CHD parents, and it was HUGE!  She opened the door for me when I didn't know there was one.  After linking in to one blog after another, I have grown to love these precious families like my own. 

You can view a list of heart family blogs under my "Prayers for Heart Friends" tab on my blog.  I will be adding more "information" to this list for my final post this week, so stay tuned!

Support Groups

Support groups have been great at keeping us actively involved in our local CHD community by helping spread awareness, supporting our hospital's Heart Unit, hosting social events and activities for families affected by CHD's and providing an outlet to meet other heart families close by.  The local group we belong to is Amazing Little Hearts - of Medical City Children's Hospital, Dallas, Texas. 

A few more national and online support groups are listed below:

Little Hearts, Inc. - National CHD support group

Mended Little Hearts - National CHD support group with local chapters. Groups  - These are group forums of moms, where you can post questions, answers, praises and such.  I find these groups VERY supportive and informative.  They also have some specialized groups for various heart defects, such as Tetralogy of Fallot. 

CaringBridge / CarePages - A lot of heart moms have CaringBridge or CarePages.  These are a great tool to maintain privacy in your child's care, but also to be able to communicate to friends and family.  I believe CarePages has a search option which can help link you to patients going through similar journeys.

A Different Dream for My Child, by Jolene Philo - This is a meditation/devotional book for parents of critically or chronically ill children.  I just began reading it last week, after I finally decided to order a copy.  It is a wonderfully insightful, powerful and intimate look at caring for your child, from diagnosis and beyond.  Using scripture to reference the various "stages" (such as diagnosis, hospital life, home life, long-term care, etc.), this book reads very much like a devotional.  Very handy to have a copy on hand for anyone you meet who has a newly diagnosed child....I truly believe it would be a blessing to have a copy from the beginning, but more than worth it to read wherever you are in your journey.

And last but certainly not least, are all our wonderful friends, family and church family who have continued alongside us through our journey.  We are deeply humbled and blessed to have you in our lives, praying for us, encouraging us, loving us and holding us up. 

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