What is life like when my child has HH? You will find yourself questioning: Who, What, When, Where, and mostly, Why? For many, this experience can be - Confusing, Challenging, Stressful, Exasperating, Enlightening, and Empowering – all at the same time!
Caring for the HH child and/or adult can be strenuous. So, where do you go and what do you do when you need help? Ask yourself, ---If I’m not healthy then how can I care for my HH child/adult.
So before you know it, it’s time for school. Preschool, first, fifth, eight, or twelfth grade doesn’t matter, there may come a time when someone in daycare or school says, “I’ve noticed some things,” or ”I have some concerns.” These words can trigger the tremendous amount of emotions, however once you have had the opportunity to think about what these words mean, now what do I do?
Once you have decided to go forward with surgery or any other alternate procedure, now what? What do I do next? Who do I talk to? Where do I go? When do I do it? There is a need to get things in order prior to leaving. How do I help my child/adult transition from home to hospital? Being prepared can help alleviate some stress.
After surgery, many families breathe a sigh of relief. Although you might be feeling a little anxious about the results, you will likely also be eager to get home and move on. You might ask yourself - What’s next? When can we get discharged? What do we do when we get home?
As friends, families, and individuals affected by HH, we understand the importance of connecting with others when it comes to dealing with the many complicated aspects of HH. Our Forum is designed to help you connect with others who may be dealing with similar issues and concerns. Join our Forum and become a part of an amazing international support community.