We Are Not Alone in this Fight...

Whether your child is 2 months old, 2 years old, or 12 years old, dealing with a serious heart defect like Hypoplastic Left Heart Syndrome can be overwhelming; you don't have to go it alone. A support group can help, and through the internet and social media today there are so many opportunities to reach out for that support.

Support groups bring together people facing similar issues. Members of support groups often share experiences and advice. It can be helpful just talking with other people who are in the same boat. While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges. A support group shouldn't replace your standard medical care, but it can be a valuable resource to help you cope.

Understanding support groups

Support groups also come in a variety of formats, including in person, on the Internet or by telephone. They may be led by professionals — such as a nurse, social worker or psychologist — or by parents. Some groups are educational and structured. For example, the group leader may invite a doctor, psychologist, nurse or social worker to talk about a topic related to the group's needs. Other support groups emphasize emotional support and shared experiences.

Benefits of support groups

Regardless of format, in a support group you'll find people with problems similar to yours. Members of a support group typically share their personal experiences and offer one another emotional comfort and moral support. They may also offer practical advice and tips to help you cope with your situation. There are many benefits of participating in support groups:

• ·         Feeling less lonely or isolated
• ·         Gaining a sense of empowerment and control
• ·         Improving your coping skills and sense of adjustment
• ·         Talking openly and honestly about your feelings
• ·         Reducing stress or anxiety
• ·         Developing a clearer understanding of what to expect when caring for your child
• ·         Comparing notes about resources, such as doctors and treatment centers

Finding a support group

• ·         Ask your doctor or other health care provider for assistance. Your doctor, nurse, or social worker may be able to recommend a support group for you.
• ·         Look in your local telephone book or check your newspaper for a listing of support resources. Community centers, libraries, or religious institutions may also be able to recommend a support group for you.
• ·         Search the Internet. Online support groups are available as email lists, newsgroups, chat rooms, blogs and social networking sites like Facebook, Twitter and Pinterest. A search on Facebook will provide a great number of local and national groups that provide support to parents of children with HLHS.  

The life of a parent of a child with Hypoplastic left heart is blessed, as our children are strong, unique, and wondrous; but oftentimes it may also be filled with fear, anxiety and isolation. Reach out for support if you need it. I have found that it’s usually just a phone call or a click away.

Best Wishes for a happy holiday and may you have joy and peace in the years to come,

Julie