Lessons learned...

Saturday, October 4, 2014

I'm a few more months into this awful journey of Dravet syndrome. I know I'm new at this but I have learned a few things so far and I thought I would share.  There is a bit of humor weaved with truth. 

1. Always wear a bra to bed.  Because that one night before bed when you just don't feel like it sure enough that next morning you will be awakened by a seizure and have to call 911. You will have no time to put proper clothes on, leaving you in the ER trying to have important, life saving conversations with doctors younger than you, all the while having to remain with your arms crossed for fear of embarrassment.  On that note, in all seriousness always have an emergency bag packed and ready to go. 

2.  Deep, peaceful sleep is rare and a gift from the heavens, when it does happen rejoice in it.

3. Facebook is great in many respects for a DS parent. It allows you to connect and share so much with other parents that understand exactly what you are going through. On the flip side of that you are also reading everyday about families and kids you've grown to love who are suffering from hours long seizures and sometimes death.  It can be a lot to take in every single day.  Take a break from it. Pray for these families daily but don't get sucked in to reading FB everyday.  It will drain you.  

4. Do things every once in awhile that make you feel like you're still normal.  Stroll through Target and look at bedding and pretend if only for a moment that your most pressing decisions have to do with decorating.

5. This is a hard one but try every now and then to talk to your spouse about things other than seizures,trying to figure out seizure triggers, death, medical marijuana, the injustice and shittyness of it all. Yes those conversations are important and have their place but you're still a couple of whose lives although it may not feel like it, is not ruled by Dravet Syndrome.  Its ok to still talk about your plans and hopes and dreams.  They may look different now, but they're still there lurking waiting to be remembered. 

1 comment:

  1. You are brave girl! But no matter what...I will never where a bra to bed.... jrr