Due to some unforeseen medical emergencies our care boxes will be put on hold. We will mail May's boxes for current subscribers. Unfortunately we are unable to take new orders at this time. Hopefully we will be back to making our self-care boxes in a few months. Emma will be at John's Hopkins again the end of May.
Please continue to keep her in your thoughts and prayers.
Thank you for swimming with Emma.
I'm going to expose insider information of parents of chronically ill/chronic pain children. During a parent meeting at Mayo Clinic's Pediatric Pain Rehabilitation Center the Pain Psychologist leading the group let us parents know what the medical definition of the word "FINE" is...
Yes, she did say the F-word...which was shocking, yet a needed icebreaker to a very emotionally charged meeting. I have heard "Freaked Out" substituted if you'd rather. So you ask a parent how they are doing and they respond with "I'm Fine"...now you know. ;-)
Dos & Don'ts
Chronic means the illness and or pain is persistent and lasts longer than 3 months. There's no cure for chronic illnesses, and symptoms vary in intensity and can change over time. Living with a chronically ill/chronic pain child can be beyond emotionally, physically, and spiritually taxing on the entire family. For the parents the days of uncertainty turn to weeks, months, and years. The endless doctor appointments, therapies, hospitalizations, and financial stress can filter quickly throughout the entire family unit. Parents generally feel pulled in different directions trying to prioritize your ill child's health and needs with trying to make your other healthy children's emotional health and lives as "normal" as possible, in a life that's anything but.
When a child is first diagnosed or the illness and pain initially surfaces the support floods in and everyone wants nothing more to help the child and family. At this time, everything is so fresh parents don't even know what they need or what people can do or say that's helpful. I've talked with several parents over the past few years living with a child with chronic illness and pain and I've complied a few things that seem to be helpful...and not. Hope you find some of this helpful. It's so hard in traumatic situations to know what's the right thing to do or say. Know, there is no right or wrong. Just love them and know that your love is needed and appreciated more than you'll ever know.
I think this picture below says it all... When flipped upside down it's an entirely different response.
Welcome to my daughter Emma's medical journey blog. Read updates on Emma and helpful tips for researching and coping with a child with an unspecified, rare genetic disease living in chronic pain. Click on the ABOUT tab to see how her journey started.