Vacay – Day 2
And we’re off!
Vacay – Day 3
Flat Janet’s Vacay
29
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And we’re off!
Boxx Banter 
Julie Butler
July 29, 2016 at 12:42 am
Oh. My. Gosh. Your friends are sooo stinkin’ awesome!!!!!
J
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Janet Boxx
July 29, 2016 at 12:43 am
I know, I know!!!!
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Karie Stevens
July 29, 2016 at 7:38 am
I am loving this…I live 45 mins from the Springs, so it’s been fun to see all of the Colorado places your flat self has been to 🙂
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Janet Boxx
July 29, 2016 at 7:53 am
That’s so cool! This is the best vicarious vacation I’ve ever taken. Okay, it’s the only one too. Maybe I can round up a few readers to take Flat Janet on more vacay adventures!
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Cleis Jordan
July 29, 2016 at 9:59 am
Sounds like you ad friends are having some creative fun with their trip. Good for y’all.
By the way, how’s my brother and your brother David these days health wise?
Love, Aunt Cleis >
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Janet Boxx
July 29, 2016 at 11:16 am
Dad’s doing fine health wise. David, not so much. I can’t remember if I told you that David had a stroke either the day of or the day before the girl’s funeral. He has not recovered full use of his left side, primarily his left arm and is not really inclined to do the physical therapy that would improve his range of motion and strengthen his arm. It’s not an uncommon reaction in the special needs community – in my experience with my own kids and observations of other parent’s interaction with their children in the therapy clinics we’ve been associated with.
Those with progressive disease like Gracen often take a fatalistic approach. The attitude is, What’s the point of working so hard when I will just lose the skill if I even manage to acquire it in the first place? The parental role is difficult to say the least. Rebellion and resentment, frustration and despair – resignation- all plague both parent and child. Rock meet hard place.
Some time ago, before Gracen started college, a therapist at Gracen’s clinic asked if they could borrow her wheelchair. They put a young man in it and had him practice using it to navigate inside and outside the clinic. The purpose was to encourage him to work hard in therapy – he had given up. They wanted him to know that failing to work now would mean he would end up in a chair just like Gracen’s far earlier than he would otherwise.
I spoke with the young man’s mother as we watched him struggle to roll over door thresholds and with the unexpected upper body muscle fatigue use of a manual chair requires. My heart broke for her as I knew exactly how she felt. She can’t make her son work to maintain the health he currently enjoys. She’s frightened at the prognosis for disease progression. She hates seeing him struggle, watching his opportunities and social interaction narrow. She feels alone, inadequate and afraid. She’s isolated – an island surrounded by healthy children and friends and family members who are dismissive of her fears and struggles. She longs for common every day problems and inconveniences – for a healthy child with average talents and skills – not exceptional talents in athletics, the arts, and academics. She just wants to fix her child and she’s helpless and he won’t even help himself – and she understands that too even though she hates it. Compassion, frustration and fear at war within. That’s the life of the special needs parent.
I wish I could dress it up in a more positive light, but honestly it is what it is. You learn to cope. It’s not the life any parent expects or is really prepared to watch their child experience let alone dealing with your own emotions and helplessness. You do your best to make the best of a bad situation and you grieve for your child and for yourself – your lost hopes and expectations for your child’s future and for your own.
I think my Dad’s perspective on the battles I’ve faced has changed in light of his own personal experience. He’s struggling his way through it like all parents do. Really, the experience is not all that different than what parents of healthy kids face with normal growing pains, its just magnified and complicated by health and safety issues outside the normative parental experience. I like to refer to special needs parenting as parenting on steroids. His age and David’s age for that matter, have presented unique challenges. For example, Dad cannot help David up off the floor if he trips and falls. If David doesn’t cooperate with him in getting up, Dad has to find help elsewhere. For Dad it’s much like parenting an overgrown teenager. Adults who’ve walked with their parents through dementia or Alzheimer’s disease can relate as the maturity they gained over a lifetime regresses back to that of a far younger age. The self-control in behavior, attitudes and motivations along with the filter over verbal expression gone – and the parent they once knew becomes a stranger to them.
Otherwise, Dad and David seem to be doing well. I saw them a week after Father’s Day (we were out of town for a wedding Father’s Day weekend). They are coping with everyday problems – the replacement of a vehicle, that kind of thing.
My vicarious vacation was definitely a highlight this summer. It was just so much fun to be included in that way. Anne has this dry wit that always makes me smile or laugh. I was absolutely stunned by the way her entire family grabbed the ball and ran with it following my tongue-in-cheek comment. It was just light-hearted banter and I never ever thought Anne would actually make a Flat Janet, let alone take all those pictures and text them to me.
I hope your family is happy and thriving. Loved seeing the wedding photo Tanis posted on Facebook recently.
Love to you and Jerry,
Janet
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