So tonight my neck is aching. Like, totally aching despite far too much Advil. I feel like I am carrying around 100 pounds of bricks on my back. I’m pretty sure I cried at least 10 times this week under the weight of this disease and the drama that comes along with being a part of this really emotionally charged community.
But here I am. Friday night and still working. I’m writing this post because somehow I have convinced myself that if I stop and enjoy life outside of the disease, that if take an hour long break that it’ll be one more hour that my family will suffer. Like sitting down during a marathon race to take a rest when I’m well aware of another 23 excruciating miles ahead of me does not really make for a peaceful rest. I have convinced myself that if I sprint through this marathon and go as hard and as fast as I can, that I will ultimately end the suffering and this nightmare will be behind us. Then maybe I can take up cooking or gardening or the PTA or some other thing normal moms do.
I’ve given a lot of thought lately as to whether or not my radical commitment to this cause is pathetic or inspiring. One thing I’m clear on; it’s not selfless. I want to FIX THIS because I want to STOP the pain. Not just for my own kids. Not just for my son or daughter. But for me. For my husband and for the other child in my home.
For a long time, whenever anyone thanked me for my advocacy work I would say (and I would mean it) “Well, in the spirit of transparency, once my kids are well I will be DONE with advocacy. I do this for us”. I thought I was being honest with the community about why I did what I did because saying “You’re welcome.” when some grateful parent thanked me for what I poured into PRAI felt really disingenuous when I knew I was doing this for one reason and one reason only, my own little flock.
But this week, I feel like maybe there was a little shift. First, I spent a few hours at the ER with Miles. Miles has the face of an angel. And I’m not even kidding. This little boy totally needs a pair of big fluffy white wings and a white circle hanging over his head. Innocent face, rosy cheeks, beautiful skin with big round blue eyes. He looks like he belongs floating along streets of gold. Miles also has a 4000 plus mycoplasma titer that despite months and months of antibiotics will not even budge. He refuses to eat after a bout of strep and rages at his mom and dad by clawing at their skin seemingly out of nowhere. He spends hours turning the water on and off just to watch it fall to meet some desperate need inside of him. He appears to have no sense of danger and because he can’t say much at age 4, and really can’t say much after a strep exposure, he often just falls to the ground in hysterics, kicking and screaming because he can’t communicate his needs.
Miles eyes this week have been rolling in the back of his head and he’s been screaming out “HELP” or “Mommmmyyyyy!” every time one of these episodes happens. Like he’s taking a bath, happy as can be, and his eyes roll backward and he starts crying out for his parents. Because I love Miles, and I love Miles mama, when I saw the video she posted on our trusted closed Facebook group looking for advice, I left my house at 7pm and met them at the emergency room. I spoke with the doctors and asked them to explain why they don’t do a full AE work up when a child comes in like this. I prayed over Miles out loud with my hands on him and prayed over his mama (her silently as to not embarrass her) and I spoke life over them both. Miles WILL heal. And I believe. I BELIEVE Miles will be whole again. I was so fortunate. So blessed to have had the opportunity to catch him when he leaped off the hospital bed into my arms for a brief belly laugh moment. So fortunate to run the palm of my hand across his soft blond hair in an attempt to calm him down after he pulled his bloody plastic thing out of his hand for the 3rd time that night.
Miles got an EEG and it will follow with a necessary 72 hour EEG this week. He got what he needed. But when the original 12 hour report came back with no seizure activity and Miles parents asked the head neuro why he may be rolling his eyesballs into his skull and screaming “Help” OUT OF NOWHERE WHEN HES HAPPILY PLAYING in the bathtub, they were confidently told “Well, it’s probably behavioral.” Let me tell you what it does inside of me when I hear that a doctor, a well respected specialist, tells a mother, that her child, who is screaming out “HELP!” while his eyes roll into the back of his head is doing so because it’s “behavioral”. Actually, don’t let me tell you what it does inside of me. I’ll leave that for the closed groups.
I left that night at midnight and I sobbed in my car on the way home speaking to my husband. Through tears, and likely impossible to understand as I wiped my nose with my sleeve like a sobbing 2-year-old, I wailed “How can this be happening? How can she be left with this kid with no sense of danger, her baby leaping off of the bed, climbing and pulling on hospital wires, on and off hot water, tantrums, rages, biting them, clawing them, her husband looks so exhausted, they looked so broken, they looked LIKE US and NO ONE DOES A THING! HOW CAN THIS BE HAPPENING??? HOW IS THIS OKAY? WHERE IS THE OUTRAGE???!!!!”
When I got home and spoke to my husband about Miles situation, it made me love him all the more when he probed into specific questions about his health and I could tell he really cared about my response. He cared about Miles and his parents. He was empathizing with their suffering, which broke my heart because he cares so deeply because he knows it all too well.
I went to bed that night crying. And not just for my kids, but for Miles. And for Miles Mama.
Then today, when I spoke to another mom who has a 15-year-old son in the local inpatient hospital, I wondered again if perhaps there was enough room in my heart for other kids. She asked me to talk on the phone with her and through a shaky scared voice that was desperately trying to be strong she told me how her son went completely psychotic overnight and was trying to kill himself and is refusing to eat. Totally normal happy go lucky kid. BOOM, Suicidal and the hospital is pumping him full of psych meds to no avail and THEY ARE NOT WORKING. No lumbar puncture looking for encephalitis. No EEG for seizures. No strep labs. No mycoplasma. No Lyme. Just SSRI’s and more SSRI’s. How many of our children are stuck in hospital inpatient facilities sick with a treatable condition?! What an INJUSTICE!
How does a child with no history of psychiatric illness go into a severe depression and have several attempts at suicide OVERNIGHT and these doctor’s don’t rule out all the possible causes? Like why? Why no stone unturned? Why the resistance to looking at every possible way to end this poor boy’s suffering?
Again, another mother called. Her son has severe OCD, tantrums, long history of strep, stopped getting fevers and the pediatrician refuses to draw labs and she wants to know what to do next. Am I in the TWILIGHT ZONE HERE?
So what’s the point of this post? We all know this is something I could have vented about in a closed FB group. These stories are our all too familiar.
I’m here, publicly, asking you to ACT. I’m asking you to get involved. To do SOMETHING because it’s the only way this MADNESS WILL STOP. If you don’t think you have it in you to do something, you’re wrong. Because if you’re too tired and broke, you know someone who can do something.
You know a person in the media who could do a story.
You know a co-worker who used to date a legislature who can put you in touch with another legislature and another one and another one until we get to one who has some power.
You can write celebrities and hope one has mercy on us. You have an Uncle who owns a restaurant and would do a fundraiser for us and give 10%. You can bring cookies to a support group. YOU CAN HOST A WALK IN YOUR STATE AND RAISE 100k JUST LIKE WE DID LAST YEAR and it go ALL TO RESEARCH THAT PARENTS THINK IS IMPORTANT. And for the love of God if you’re one of the lucky ones who have money you can donate so we can get this PARTY started. It’s ONLY money. Literally it’s pieces of rectangle green paper with dead white dudes on it. You can’t take it with you!
You can do SOMETHING. Because here’s the truth…. And perhaps this isn’t the best way to rally troops, because maybe it’s hard to hear, but if YOU don’t do it, if WE do not do this, NO ONE else will. Trust me when I say, I want one thing and one thing only, to END THE SUFFERING FOR OUR CHILDREN.
JOIN US. Please, please join us. Join us for Miles. And for Miles’ mama….
Sign up and become a volunteer and let’s kick this disorder in the TEETH: https://praikids.org/volunteer-signup/
The LORD will sustain him upon his sickbed; In his illness, You restore him to health.
~ Psalm 41:3