Since I started writing about chronic illness a year or so ago, I have people that reach out to me every week. Some to tell me that they have migraines and can relate to our story. Others reveal that they've dealt with depression and self-harming thoughts with their teenagers and appreciate that I'm not afraid to tackle the topic. Many times, it's a parent that's just gotten a diagnosis (many times for a child) and they just need a sounding board. Their life is about to be different and they haven't quite processed. They don't know where to begin.
Here's the good news. A diagnosis is a start. It gives you the ability to put a name and a face on the malady that's going to be part of your lives. To me, that's very comforting. Not knowing is scary and as a parent it's a terrible burden to carry. However, sometimes knowing can be terrifying for parents-cancers, genetic conditions and immune system disorders can be frightening. The world is suddenly turned upside down and they don't know where to turn. My experience dealing with nervous system disorders is not the same, however I can share a little wisdom that I hope will help a parent searching for a place to start. Here's what to do after a diagnosis.
Take a deep breath– This is easier to do if you've had a child sick for an extended period of time before diagnosis. You have an answer- take a moment and just breathe. Let it sink in. It's not so easy for parents that have a healthy child one day and find out they may have leukemia the next. However, it's one of the best things you can do for your family (and deep breathing can reduce your stress level).
Ask questions– You're going to walk away from the specialist's office with questions. It's absolutely impossible for a doctor to tackle everything in one visit. As things pop up, write them down in one notebook so you can cross them off as they're answered. I encourage all parents of chronically ill kids to keep a symptom journal. This helps you to see patterns and it's helpful at doctor's visits because it's there chronologically in black and white.
Do your research– Ask your physician's office for research material. When we left the Mayo Clinic, we had brochures, a list of medical articles and You Tube videos so we'd be educated. I've spent a lot of time doing my own research online. Don't be afraid to Google. Knowledge is power.
Don't be afraid to ask for a second opinion– Doctors can be wrong. Treatments can vary. It's always a good idea to get a second opinion to make sure your diagnosis is correct and the treatment recommended is the right one for your situation and family.
Involve your child– If you have an older child, they need to feel like they have some control- it's their body and ultimately their illness. Teenagers need to be involved in the process. They need to feel comfortable with all the options especially if they're invasive.
Decide what treatment options you'll choose first– Your physician will recommend a treatment protocol, but ultimately it's your family's decision the direction you want to take. You're given options and you need to figure out what works for your child. We've chosen to defer medication to treat Rosie's POTS because Beta Blockers can make kids depressed. If our other options don't work, we can always revisit.
Admit you're scared– It's perfectly normal to be frightened when you get an unexpected (or even expected) diagnosis. Life's about to change and that's scary. Own it. Talk about it so you can deal with it. Just don't let your kids know.
Find support– As a parent, now's the time to call your best friend, sister or even clergy and ask for support. If you feel like you don't have someone close that will understand, don't be afraid to find a counselor. Often social workers at hospitals will have lists of art therapists, psychologists and support groups for both parents and children. Take advantage of the services. Illness can make you feel very alone.
Learn to be tough– If you thought your kids needed you before, you were right,but now they need you even more. It's time to put on your game face. If you think you're confused and scared, think how they must feel. Temper the toughness with lots of hugs and kisses. Laugh a lot it's the best medicine.
Adjust to the new normal– Life has changed and whatever normalcy your family had before may be gone. Guess what? That's okay. Embrace the life you have now. Learn to joke about the doctor's visits, make treatments bearable and do your best to bring your child moments of joy every day.
Finally, if you haven't already, it's time to contact school and come up with a comprehensive plan (this in itself is a complete series of blog posts). If needed, your local children's hospital probably has social workers to guide your conversations with the school counselors. Be sure to craft a plan that sets your child up for success.