After six hours of grading papers tonight, I found the Heath Bar ice cream. Oops. But I have more than one reason to love it tonight: After days and days of begging, our daughter finally convinced us to let her have a few bites of her favorite ice cream, and she kept it down!
Now before you think I’m all Scrooge, refusing to let a kid eat ice cream, you need to understand that she’s been on a feeding tube for 6 weeks because every little bite of food makes her sick. Everything from a saltine to a bite of fruit or sip of smoothie—no dice. Of course, ice cream sounds like a questionable choice for a kid who can’t eat, but she gets all her (balanced) nutrition from the formula the tube drips in. The biggest concern for me was the richness. But lo and behold, a couple of bites down and we have a winner! We may try it again tomorrow. Woo hoo! This is the first success in months! Wow.
And last night I got to meet, by telephone, a stranger who may well have changed our lives. She made a slide show about her daughter, who had very similar symptoms to our daughter, and the rough journey they traveled until they got a diagnosis of POTS (postural orthostatic tachycardia syndrome). It’s not as fun as it sounds! Because they waited so long for someone to figure it out, she made the presentation to raise awareness about this mysterious illness and hopefully help others. Good plan! By a miracle, it ended up in my inbox and voila, the only diagnosis we’ve been able to piece together. We expect there may be other diagnoses, and are curious to see if this POTS one sticks when we go to the Mayo Clinic.
I will always be grateful to this kind and generous woman. She is a member of my Club Med. Not the beach-intensive one. This Club Med is different. It’s a real tribe of warriors: mothers of sick children. Dads are members, too, working hard to provide for the family and keep that insurance policy intact. Or maybe they stay at home with their child. But most often it’s the moms who do all things “med”–spend hours on the phone with schedulers, nurses, doctors, insurance companies, pharmacies, home health services, and dieticians. In between we’re trying to get the laundry done and the brakes on the car fixed. We take our kids to the doctor appointments, tests, and therapies. We show up in the school nurse’s office with a list of instructions, explanations, medical release forms from doctors’ offices, prescriptions in their original labeled containers, and a list of dosages and when to take them. The fiercest Club Med members maneuver kids around in wheelchairs. Some angle IV poles into carpools, or drive the custom minivan to accommodate those myriad special needs. Our focus, however, is not on the logistics. Those are the big distractions. Our focus is to give our kids as normal and happy a life as possible.
I’m a neophyte, and a lucky one, in this Club. The veterans of Club Med have so graciously, without even knowing me at all, offered their phone numbers and email addresses so I can ask them questions “any time!” I am in awe of those who walk a tougher road than I. I am hopeful after speaking with one whose child is recovering. I am humbled by those whose kids won’t ever get “better” and who have learned to find joy and peace in the life they have been given.
I’ve talked to moms from California to Colorado, moms who have taken their kids to all the hospitals we have tried or waited to get into. They’ve shared tips and insights on medical equipment and tests, diagnoses, theories, doctors, hospitals, and nutrition. Their compassion is a drink of therapeutic water to the bewildered. They’ve been there. They know. Like mine, their kids have baffled the best docs and frustrated the worst. But they never give up. They just keep on going. And because they are so fierce and determined, their kids do too.
So as we head out to the Mayo Clinic, I will be covering my Club Med in prayer. I ask you to please remember them, too. All the good energy you send up in their name will find them. I am sure of it. It has found me.
