If I’ve learned anything over the last 13.5 years as a parent to a child with HIE, it’s that delays happen — in child development, in medical care, in travel, and sometimes in heating your house among other things.
I was set to travel last night to the CHILDRENS HOSPITAL NEONATAL CONSORTIUM conference, as Hope for HIE was selected this year as the charity beneficiary of their annual run, and we get to integrate our established Hustle for Hope program into that — which means we have some fantastic swag for participants. And, conference attendees get to know more how we support HIE families in comprehensive and longitudinal ways, how we partner in research, and what our top priorities for advocacy. We also get to connect with many of the HIE focus group folks that we work with in other areas, and be a part of an exceptional conference.
Saturday, my kid’s brain decided it was a good time to start a new seizure type after a beautiful stretch of over 2.5 years seizure free, which throws our orbit into recalibration. Happening on a Saturday and during Epilepsy Awareness Month is a little on the nose, but we do what we always do — we adjust, come up with a game plan, and go forth.
That meant I needed to adjust my travel and be home for our neuro visit, reassure my kid he’s safe and taken care of at school, and be a good partner to my husband who also, as of last night took on getting our furnace fixed.
Skills we have acquired in this life mean that we take the time to honor everyone’s feelings about where we are at, make sure they feel supported and loved, reach out to our community of support, accept the help and the things you can’t change, work to change the things you can, and prioritize balance.
One of the really positive things about having years of practicing this is appreciating the good in the hard. The fact my kid has cultivated peer support of his own through things like epilepsy camp (thank you North Star Reach & Epilepsy Foundation of Michigan) and without prompting, reached out to his “neuro bros” chat, and got the support he needed, is gold.
Knowing how to ensure my daughter has the support she needs in these moments as a “super sib” and having Annie Gunning, CCLS, GC-C check in as a support, is gold. Having cultivated our own peer support over the years through Hope for HIE, and having friends send me hilarious memes to cope, is pure gold.
So today, we will adjust meds and get the heat back on. I’ll head to Denver in the morning. And we will be delayed in things today, but not deterred from living our lives and getting back to a baseline.
I would’ve missed this beautiful morning moment blending seasons today, and so enjoy this if you’ve made it to the end!
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