Field Manual: Friends of the Mission

USA Friends of the Mission

 

Organization Primary Focus Link and Notes
Adult Congenital Heart Association (ACHA) Patient education and advocacy, research http://www.achaheart.org/
Excellent resource for teens and their parents as well as adults with CHD.
The Children’s Heart Foundation Research http://www.childrensheartfoundation.org/
Funds research only for congenital heart disease! Best investment of your friends’ good will and donations.
Facebook Groups Mostly support http://www.facebook.com (search on CHD)
  Recommendation: Find a few good friends on Facebook and chat about sensitive things privately. Offer support to those who need it, it’s good for your karma! See the Internet Warnings for more information.
Hypoplastic Right Hearts Emotional support and parent education. http://www.hypoplasticrighthearts.org
I made this! This was my first nonprofit that I founded. We do only allow families with Hypoplastic Right Diagnoses to keep the discussions focused and the education relevant to all. But we’re just like a gated community in the heartland, where we all come out and make friends with the other folks.
Mended Little Hearts Local Emotional Support http://mendedlittlehearts.org/
The greatest way to meet people in the Heartland who live near you. They’re also progressively partnering with the ACHA and the CHF and pulling the Heartland together. Great people who are in it for the right reasons.   If you don’t have a chapter- start one and I’ll put you on my web site as a heart hero!
Ronald McDonald House Charities Housing and Food and Emotional Support http://rmhc.org/
The most amazing place that you never want to have to visit. So, if you’re in a good place in your life, visit because you want to and help these families by bringing food, donations, or your services. It’s called the house love built for a very good reason – it’s true.
Saving Little Hearts Emotional Support I’ve known the founder Karin for years and years. She sends gift bags to patients and families in the hospital and has an amazing conference every year! Great organization and if you live in the South, try to get to their conference.
Donor Alliance Organ Transplant Coordination and Support Services Regional outlet for Colorado and Wyoming, their web site http://www.donoralliance.org has great information and resources. Search on “organ donation” and the name of your state for similar resources near you.

   

How to Find Local Resources:

  1. Call your hospital and ask for the cardiac social worker or child-life experts (sometimes it’s the volunteer office).
  2. Talk to your social worker/child-life specialist/volunteer coordinator about services and support groups.
  3. If you don’t have a support group associated with your local children’s hospital, contact Mended Little Hearts (http://mendedlittlehearts.org/)about their chapters or starting your own.
  4. Remember, 1/100 babies is born with CHD and there are two million North Americans with CHD, so there are people near you. It might take some effort to find them at first, but it will be worth it when you can stand in a room with people who’ve been where you are.
  5. If you need financial assistance, call your city, county, and state government offices and ask about services for disabled children. You can also call the special needs social worker at your local hospital that delivers babies, even if yours was born elsewhere, to ask about county or city services. I can’t promise you you’ll find what you need, not all entities offer services to all income levels, but this is the best place to start.

Words of Warning about the Internet

 

I love the Internet. I love Wikipedia, Google, Carepages, and http://www.hypoplasticrighthearts.org. I even have begrudgingly come to love Facebook and Twitter. But be warned and be safe, take note of the following things:

  • Not everyone on Facebook is there to comfort you. Some will just want to play the “my child is the sickest child” game. Flee these people, do not befriend them. They are either too steeped in their grief to give comfort to others, or they’re just crazy. Either way, if they’re going to derail you on your journey through your own grief, avoid them.
  • Beware of spammers and liars (people have actually made up imaginary children), and Münchausen by Proxy people on Facebook. They are all initially strangers, and it’s ok to avoid them.
  • Question EVERYTHING you read online, and ask your pediatric cardiologist about what you’ve read. Much of it is old, misinformed, or inappropriate to the nuances of your child’s condition. Some of it is highly medical and hard to understand. Ask your doctor, you’re on the same team. Liam’s cardiologist and I are on Team Liam.
  • Do not compare apples to oranges. If a child’s heart is identical to your child’s heart and their treatment path is different it’s TOTALLY appropriate to ask your doctor for insights, and learn from that experience. But if a child’s condition is remotely or even marginally different from yours, don’t compare your child to theirs. It’s perfectly good and right for you to learn about other children to help you understand your own child better. But you only have your own child to raise. What you share with other parents is information, not competition, and no one’s opinion online matters one tenth as much as your medical care team.
  • Don’t let other people judge you, and choose your friends wisely. I’ve seen mothers torn to shreds over circumcision, parenting style, termination, and even photographing their sick child. Sigh . . . judge not lest ye be judged, and if someone is judging you, unfriend them, delete them, whatever. Heart family or not, no one has the right to tell you you’re doing things wrong. You’re doing your best, and only your child’s medical care teams’ opinions should matter as much as yours. Everyone else is secondary. That said, be careful what you share in mixed company and seek those folks who will offer you the best support.


Tell me what you think.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s