When good enough just isn’t good enough anymore.

It was good enough for awhile but it’s not good enough anymore. This picture depicts Haley’s daily medication regiment.

5.5 years ago when she was diagnosed and the first medicine they gave her didn’t work it wasn’t good enough. We pushed for better. So they gave her more medicine
When that medicine elevated her liver enzymes and caused permanent liver damage it wasn’t good enough. We pushed for better. So they tried another medicine.
When the next medicine triggered more seizures and forced her into a medically induced coma to stop them it wasn’t good enough. We pushed for better. So they gave us new medicine.
When she awoke from the coma unable to hold her own head up or sit unassisted let alone walk independently it wasn’t good enough. We pushed for better. We fought for inpatient rehab.
When we left the rehab hospital a month later still unable to walk without assistance it wasn’t good enough. We pushed for better. We fought for extra outpatient rehab.

This is what 75% improvement looks like. This is why it's still not good enough.
This is what 75% improvement looks like. This is why it’s still not good enough. 

When she continued seizing and failed medication after medication it wasn’t good enough. We pushed for better. They offered surgery as an alternative.
We went for a surgical evaluation and were told that she wasn’t a good candidate. That she would likely be left unable to walk or speak. It wasn’t good enough. We pushed for better. We researched new and innovative treatments and tried many alternative therapies.
When we learned of children having success controlling their seizures on medical cannabis we were told that it wasn’t legal. It wasn’t good enough. We pushed for better. We started fighting for it in our state.
When MA voters approved a ballot question allowing medical marijuana the regulations limited pediatric access to children within 6 months of dying. It wasn’t good enough. We pushed for better. Our Dr testified before the committee about the impact that would have in chronically ill but not terminal children.
When those regulations were changed but access to cannabis medicine has been stalled repeatedly by beaurocracies it wasn’t good enough. We pushed for better. We staged a protest and continue to speak out at every opportunity. Not for attention or fame but crying for help.
When Haley’s seizures escalated and she was needing life saving doses of rescue meds 4-5 times every day but our doctor told us not to come to the hospital because there was nothing they could do. It wasn’t good enough. We pushed for better. We insisted cannabis was our answer.
When she entered a clinical trial for a pharmaceutical version of cannabis we thought we had found our good enough. But it lacks the synergy that occurs naturally in the plant and isn’t working. It’s not good enough so we pushed for better. Naturally occurring whole plant access needs to be available to every patient in need. We continue to fight for that in a legal state.
When I researched and networked and found potential in another medication that we hadn’t tried yet our doctor said I really don’t think that’s your answer. I’ve never seen it work long term. It wasn’t good enough. I pushed for better. I presented all of the evidence I could that it was worth a try.
When our Dr sent a prescription for the medication that I found and fought for I stood staring at the list of side effects and thought It’s not good enough. We have to do better. But I gave her that pill anyway.
When the first dose of that medication decreased her seizures by 50% and over the following week she had a 75% decrease you might think it was good enough. But she experienced rare nervous system side effects and struggles with managing metabolic acidosis which can be fatal if not properly controlled as a side effect of that medicine. It’s not good enough. We have to do better. But I continue to shovel that little white pill in her mouth.
When months go by and we are grateful for the decrease in seizures but we are forced to acknowledge that despite the decrease in seizures she’s still seizing EVERY single day we realize. It’s not good enough. We have to do better. We need to fight harder and get access now. We cannot wait.
When I look around at my network of special needs parents and see so many kids in and out of the hospital. So many ambulance rides and emergencies and just being beaten down daily by watching their children suffer I know… It’s not good enough. We have to do better. We have to support one another and join our voices.
When I say we I mean all of us. Even those who don’t have a child suffering. You have a voice. You are powerful. You can help. You can look around you at the state of our healthcare and marijuana laws and you can say…It’s not good enough. We have to do better. And by we I mean me too.
Do better. Be better. Get involved.
Start here:
http://www.parents4pot.org

One thought on “When good enough just isn’t good enough anymore.”

  1. Great post! I know a family of a boy with epilepsy who has been through much of what you describe. Medical marijuana has been a miracle for them and stopped his previously uncontrollable seizures. I can put you in touch with them if you’d like–maybe you already know them as they are activists in this area too. Keep up the good work!

    Like

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