Be a “professional” patient. Show up to appointments on time. Bring the necessary records. Call when you’re running late or need to cancel.
Be kind. Be friendly and polite to the medical staff. Make friends with them, not because you’re trying to manipulate them, but because you need friends.
Be an expert. Know everything you can about your child’s condition. Read journals. Study websites. Learn. You aren’t going to have time for any of this — do it anyway.
Be your child’s best advocate. Don’t be afraid to speak up. To ask questions. To get multiple opinions. To ask your doctor about the research. Take your child to the best. Switch doctors when you don’t like the standard of care.
Let the doctor be the doctor. Do this not because this person has the medical degree, but because it’s his or her job, not yours.
Don't let your child’s needs isolate you. Having a child with medical needs can be lonely and intimidating. allow it to alienate you from the people around you.
Find support groups. Join online groups. Find a special-needs support group. Have someone to whom you can vent and relate. Don’t lose the people around you.
Allow yourself to recuperate. Whenever athletes do any kind of strenuous exercise, they rest to give their bodies a chance to recuperate and to avoid injury. Allow yourself to do the same — mental exhaustion is real.
Appreciate that things improve with time. Your child’s prognosis may not improve, his or her condition may be debilitating and deteriorating, and these are hard, hard things. But some things do get easier with time. Time, for better or worse, means more experience, more practice, greater perspective.
Learn how to be a parent, not just a caregiver. You’re a pharmaceutical dispensary, a home therapist, an insurance specialist (yes, you will spend so much time on the phone with the insurance company that your ears will bleed) and medical transporter. But you’re also a parent. Take the time to appreciate your child and to love that child as only a parent can.
