1. Grieve appropriately. It's okay to cry! In a way, Maya's diagnosis felt like the death of one child and the birth of another. We cried for a very long time. It's natural to want to blame yourself or blame others. It is important to get help such as by meeting with a social worker, psychologist, marriage therapist, or psychiatrist. The final stage of grieving is acceptance, and you will get there! 🙌
2. Convince yourself you CAN do this. People always say to me, "I could never do what you do." Well guess what? If it happened to you, you would step up and be the best parent you can be! You will become an advocate. Some say, "God only gives you what you can handle," but the truth is, I think it's all random. All kids are brought to this Earth to teach us something! Maya has made me a better person in just 5 years. 💪
3. Do REAL research. Dr. Google doesn't have a medical degree! Nor do most of your Facebook friends. Social media and the internet have become dangerous places. Read peer reviewed journal articles on the problem. Research your doctors' credentials and experience. Ask how many patients they have treated with your child's condition. Find out what hospitals you can go to using your insurance. Get second opinions. We got 5 opinions for Maya's heart surgery without even leaving our home - many hospitals and doctors can do virtual opinions with you!
4. Mobilize your unit. When you're ready, be open with your closest family and friends. People who truly love you will love you even more once they learn about your diagnosis. If someone is unsupportive or judgmental, you don't want to be their friend anyway! People will come out of the woodwork to help you, but only connect with people who can love you, support you, and listen to you.” - @jottenheimer
5. Please follow @jottenheimer and read her comments for Tip #5. ❤️🤗 Thank you Jenna!
#williamssyndrome #wsawareness #specialneeds #specialneedsfamily #raredisease
