Last month's post ("Your Daughter Should Be A Marijuana Farmer") prompted many similar responses. There were folks who commended me for keeping my sense of humor amidst our particularly frustrating situation, and others who asked how I possibly could laugh my way through it. The answer? Practice.
This special needs parenting journey has been fraught with formidable foes. As those who read With Angel's Wings know, first I was faced with the challenge of Hannah's severe medical instability. There was also a test of confidence in my parenting ability, as I felt the weight of judgmental stares and whispers, specifically before Emily's diagnosis of autism. Looming over both of those was my battle with clinical depression. There have been smaller skirmishes over the years, as well - special education scuffles and state services strife (as chronicled in last month's post).
My most recent adversary, however, is burn-out. I have been drawing up meds and priming g-tube feeding bags every day for 20 years now. I've been changing diapers every day for 23 years. Alone, those tasks don't sound like much, but - trust me - after two decades, when coupled with all the other special needs tasks (providing all personal care, IEP meetings, insurance and government paperwork, doctors' appointments, etc.) I'm tired. I mean... Bone. Tired. However - as any parent of a medically fragile child will likely understand - I can't dwell on my woes, because every frustrated, irritated, fatigued, or resentful thought about what is expected of me is countered with one crushing truth. The only way out of doing these chores for the rest of my life is to lose my daughter. How can I possibly gripe about daily menial chores when the alternative is my child's death? And that's the never-ending cycle of fatigue/resentment/guilt that defines caregiver burn-out.
Fortunately, I have a secret weapon. For 20 years now (yes, that infamous night in the Cow Room, as described in With Angel's Wings was 20 years ago!), I have have been gifted with daily humor. My dear husband has provided a never-ending stream of reasons and ways to find joy in each and every day. Whether it's one of his creations...
...like an email...
...or a comic...
...or his embodiment of a favorite video game character (like Frank from Dead Rising)...
...or a favorite sports hero (like Larry Bird).
Whether he's out in the wilds, stalking the mighty and elusive Christmas Tree...
...or braving the raging waters of Neal's Pond...
...gallivanting on his mighty steed...
...or out tearing up the roads on his hog.
Whether he's in touch with his inner warrior...
...his inner ninja...
...his inner cowboy...
...his inner diva...
...his inner crustacean...
...or...uh...his inner insect (?)...
He reminds me every day that there is always...ALWAYS...a reason to smile...
...and that this is an absolute truth to never be forgotten.
Thank you, Hon, for 20 years
of GREAT dances in the rain.
Big hugs to both of you. I know a little what it is like. My daughter has epilepsy and although she is now 22 she is still the little gem that I carried for nine months. I also had to care for my Mum who had cancer and I know how gruelling 24/7 care is but agree with you that the alternative is not even worth thinking about. Loved this post.
ReplyDeleteThank you so much for taking the time to read the post, and thank you for the cyber hug! I commend you on your hard work caring for loved ones at both ends of the generational spectrum. Well-deserved hugs right back to you! Take care, take a moment for yourself if you can, and have a festive holiday season! ~Stephanie
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