Every day, we are inundated with cheesy, clickbaity numerical lists. I don’t like them, and I try to ignore most of them. I also ignore most “awareness” days, weeks or months. There are just too many of them, and they get lost in the noise of national hot dog day or whatever other drivel is foisted upon us.
But today is the last day of “Cerebral Palsy Awareness” month, and tomorrow marks the beginning of “HIE Awareness” during the month of April. My son Kohl was born with HIE, which is brain damage caused by a lack of blood and oxygen. Cerebral Palsy is one of his diagnoses. So while I give not a shit about other awareness months, I give very much of a shit about these two.
I genuinely enjoy it when friends who are traversing similar paths as us offer tiny glimpses into their worlds. It puts faces and stories behind otherwise meaningless words. So as much as I want to punch myself in the face for doing this, here are 31 observations from our little dance with this bullshit. This is, in no way, comprehensive and they are strictly mine. I hope at least some resonate with you and this stupid post, in some way, raises awareness:
- Seizures can go fuck themselves.
- Modern Medicine is good at solving specific problems and treating acute conditions, but it sucks at treating chronic ones.
- Out-of-pocket expenses can be astronomical because health insurance doesn’t cover a lot of things that are useful, but expensive.
- The medical system in the U.S. is broken and needs fixing.
- Whether I’m doing “enough” is a constant source of anxiety.
- Having a child born with serious medical issues can make or break marriages, but thankfully it has strengthened ours.
- Raising “healthy” children is far from “easy” but it damn sure is “easier.”
- Siblings are special.
- I play the “what if” game regarding the past, which is not productive, but it is inevitable.
- I constantly worry about the future.
- Having a child with medical issues is a traumatic event, and many parents of children with medical problems have PTSD that is undiagnosed or otherwise ignored.
- Connecting is better than fixing.
- Other parents facing similar problems are, hands down, the best sources of useful information.
- Special educators have a very important and difficult job for which they are grossly underpaid.
- Public resources are woefully inadequate.
- Awareness is woefully inadequate.
- There are countless things more important than eliminating the word “retard” and all its variances from your vocabulary, but you should probably just eliminate it from your vocabulary.
- If you park in a handicapped parking space without a tag or otherwise without actually needing it, please take a knee, punch yourself in the face and never do it again.
- Having an “us versus them” attitude is human nature, but it is not helpful for anyone.
- The present moment is what it’s all about.
- Forcing yourself to come up with three things you are thankful for every day is an unbelievably useful exercise.
- Having siblings, grandparents and/or close friends around is indispensable.
- The human brain seems to be the least understood organ whose mysteries we are only beginning to discover.
- My priorities have been recalibrated, and many of the things I used to give a shit about seem laughable now.
- I find young kids and the elderly to be highly entertaining, endearing and instructive of what is most important in life.
- Regardless of where on the scale of introversion or extroversion you find yourself, authentic human connection is what I think we all crave most.
- This journey can be indescribably frustrating.
- This journey can be indescribably stressful.
- This journey can be indescribably magical.
- Religion is an important source of comfort and strength for many, but definitely not all.
- Parenting my kids has been my greatest passion and is my most important job.
Now, if you’ve read this far, you must be really bored or have nothing else to do. In any event, thanks for reading. If you think they would be of value to anyone for any reason, please share them.
I think you two are remarkable parents, not just out of necessity, but because you bring such love and humor to your life. I have so much admiration for you all.
Not certain job. Made me grin. Keep writing. The drought between posts gets a bit unbearable.