So I have a medically complex child, and because of that, I happen to run around with a motley crew of mothers of other medically complex and children with special needs. (We’re really fun at parties!) People tell us all the time, “You are so strong” or “We just don’t know how you do it” and guess what – we don’t know either. We just do. These people are my tribe of Medical Mamas (and Daddies), and they are the kick-assest people I know.
Medical Mamas have heard. It. All. I’ve personally been told I have “extreme anxiety” about my kid (insert eye roll). I’ve been lied to by insurance companies (no joke, one time I was told our specialty pharmacy was going to COURIER MY KID’S MEDICINES RIGHT OVER, which is just the goofiest thing I’ve ever heard.) I’ve appealed appeals and had to consult three different specialists for basic things like annual vaccinations and teeth cleanings. I have friends who have explained deductibles and coinsurance to customer service agents at their insurance provider and who have used their advanced degrees to argue why their kid should receive a special treatment that’s been denied. It is crazy-making, and it’s basically a full-time job that we don’t get paid for (unless you count the thousands of dollars we’ve collectively been overcharged by our insurance companies’ ridiculous billing errors – no lie!). We do the best we can because we love our kids – that’s it, plain & simple.
Us Medical Mamas know all the things there are to know about our children’s’ conditions and probably many of the things there are to know about our friends’ kids. I count “amateur hematology” as one of my hobbies (yet another reason I’m really fun at parties!), and I can tell you about basically every study that’s been published in the last 3 years about ITP. All the doctors in the world can’t out-knowledge a Medical Mama, especially when it comes to her own particular kid. We carry around this minute-by-minute encyclopedia in our brains about our kid’s symptoms and side effects and when they last ate. It’s probably why we can’t remember to pick up the dry cleaning. We also have this amazing network of other Medical Mamas who are themselves walking encyclopedias. So, if your kid is diagnosed with something strange, just ask the mom of a sick kid, and she probably has a friend-of-a-friend whose kid is also fighting that same thing. We know all the best tricks when it comes to getting blood work and giving yucky medicine. We can probably decipher worrisome lab results with a reasonable degree of accuracy. Also, we have fun hidden talents like being able to diagnose your kid’s rash via text message (another true story).
When you ask, “how are you?” and we say “fine,” we really mean something like, “Things are just the normal amount of terrible.” The people you really need to be asking “how are you doing” are the siblings of those complex kiddos. When we were at Give Kids The World Village earlier this summer, I watched a family with two daughters come into the salon. The wish child was telling the volunteer what she wanted to be done, while her sister sat and watched. Then, the volunteer turned to the sister, and you could see her face just light up – I’m not sure she realized that she could get a spa treatment too. For years it’s been all about that “special” kid – where is their medicine and when is their appointment and how are they feeling. Those “normal” kids sometimes get the short end of our attention (and energy) (and finances) (and sanity) – and as Medical Mamas, I’ll tell you we feel absolutely awful about it. So if you know a sick kid with a brother or sister, offer to take their siblings out for ice cream or a treat, and let them know that they are loved too. One of the kindest things we experienced when our son was diagnosed was our friend Reverend Paige bringing a special Chick-fil-A lunch to my daughter on the day of my son’s first bone marrow biopsy right after he got sick when we weren’t sure exactly what was wrong with him. I’m sure my daughter was scared and worried, and it meant a lot to us to know that someone was looking for out for my daughter while we were preoccupied with my son. There are no bells to ring, no wishes to be granted, no special events for those brave sisters and brothers of the medically complex, so anytime you can make them feel like Queen or King for the Day, please take the opportunity to do it – you will be helping a Medical Mama shoulder the heavy burden for her family.
If you know a Medical Mama, know that she has seen some $%@# in her day. She has walked and continues to walk through the fire every day for her kid. She has used her body to hold down her child while an IV was inserted, while they both cried their eyes out. She has cleaned up all manner of bodily fluids without flinching (too much). She has spent literal months of her life on the phone with the insurance company, and she is not to be trifled with. And, God forbid, your world ever comes crashing down on a random Tuesday in a doctor’s office, she’ll be the first call you make and the first one to show up with a casserole.