Displaying items by tag: narcolepsy
My youngest-about-to-graduate-high-school daughter taught me an amazing lesson recently.
The thing is, I didn’t start out parenting in lesson-ready mode.
20 years ago, my parent-to-be assumptions were clear cut: this parenting thing would be a strictly one-way, mom-is-teacher & daughters-are-students in this family/classroom combo thing.
And yet despite the clarity of my pregnant brain at the time(s), my girls have not stopped teaching me from the moment of their births.
Like all children, my kids didn’t come with the soon-to-be-much-needed directions. And while I had influence and the final say-so (usually), the lessons only truly became clear after learning from them what would work best – for all of us. They were teaching me – right from the start. (Dammit. So much for assumptions of who was at the front of this class.)
My biggest lessons centered around planning. As in, be prepared to un-plan, re-plan, revert-to-the-back-up-plan style of planning.
(This, of course, often meant quickly improvising said back-up plan to look like it always existed. HA! Tell no one. We parents are nothing if not creative with a quick new-and-improved, pulled-out-of-the-hat-make-it-look-like-the-plan-all-along plan. We are geniuses on that front.)
For instance, there’s the kids-get-sick derailments, often followed immediately by (or in conjunction with) the adults-get-sick debacle. And those are topped off with the kids-get-sick-again weeks from hell. Whatever the original plan was, the new plan is tending to a house full of sick people, rescheduling all events and appointments, and basically canceling life as we had known and planned it. Instead, we are now entertaining the infirm with song and dance; music, musicals and movies; and food – preferably of a variety that will stay down or, at least, will not stain if it reappears. (Eewww.)
Then there’s the kids-get-new-schedules surprises. They make the team. They make another team that conflicts with the first team. They get a part in the school show. And a bigger (or smaller) role in the non-school show. They get the job you begged them to apply for but they are too young for a driver’s license and need you to drive them to and from. Day and night. Weekdays and weekends. (Uh, what were you thinking??) They decide to join the club that they swore they would never, ever be seen at and they have to meet after school, alternate Monday nights, and occasional weekends. (And oh, yes, you are driving. Again. And aren't you proud that they are joining in?)
More new plans.
Of course, with kids, plans naturally redefine themselves every time school lets out and then school has the audacity to let itself back in just when you had mastered the let-out plan.
New summer? New plan. New school year? New plan.
And too, have you noticed that kids get older? They actually age faster than we do. And suddenly and subtly, they require new boundaries, new rules, new consequences. Less of this; more of that.
All new plans.
You get my point. Flexible planning has been one of my biggest parenting / life lessons.
A few weeks ago, I learned the ultimate (well, the most recent ‘ultimate’) lesson when my daughter’s college dream / plan was derailed by her medical needs. Just like that. The very weekend that the college deposit was due. It's a magical date.
This turn of events came after months of her writing essays, of filling out applications by the deadlines that she kept careful spreadsheets to track. It came after a painstaking and often nauseating process of completing the financial aid forms that went with each of those college applications and then sending individual letters explaining extenuating circumstances with deeply personal information that we were now entrusting to strangers. And these letters were often accompanied by more forms and more details and more tears and more frustration and more follow-up calls – all of which she tracked.
She kept the biggest and smallest of details on a spreadsheet she painstakingly maintained much to my surprise delight. Everything was turned in on time. I know because she verified each single line item for every single school. (For this one character trait – and possibly a few others – I am proud she takes after her mother.)
We were survivors (barely) – my daughter and I – of the college application and financial aid application processes.
We weren’t quite sure where the money was going to come from for next year; but we were determined to get her there without robbing the bank. In the final moments, she was given extensions at two schools as they promised to look again at her/our situation. We were still in the game right up through that deposit deadline weekend.
And then, the plan shifted. In the blink of her tired, narcoleptic eyes.
My daughter needs a service dog for two medical conditions. Conditions which, at home, we had managed without a dog because I unwittingly have been at her service. For better and for worse, I have been available to her 24/7. Like any parent, I have been her dog. Woof.
We had just settled into these roles not looking far into the future. Not realizing. Not thinking. And, okay, not knowing there were alternatives available.
When the doctor said "service dog", we realized how that would change everything for her – and for me. The dog would allow her to gain an independence that she had come to understand she was missing; I would gain an independence that I hadn’t realized that I was missing.
And so, she started looking.
Here’s what she discovered in quick order:
- One must apply for a service dog like one applies for college. There are numerous organizations, each with their own application processes (from forms to essays to home videos to documentation) and their own admission guidelines and committees who make final decisions based on internal policies that we cannot be privy to. As I said: like college.
- One must have or raise $15-$20K (yes, THOUSAND) to pay for the dog, the hours of training a puppy to behave and then training the dog to serve, plus feeding, vet services, etc. This amount does not include travel and long term lodging – because like college, your only acceptance and/or cheapest option may be hours or days away and, at the very least, those final weeks of training must focus on bonding and on the dog being able to perform specialized tasks for the specific needs of the specific person. You go to your dog. It is not unreasonable but ...
- No portion of the cost is covered by insurance and there is no financial aid available (though a very few organizations have small grants through generous and understanding benefactors).
Not knowing about the need for the service dog as she began her college search and application, she never considered local schools where she could have been a commuter student. And on the weekend that the deposit was due, she interviewed with two service dog organizations who both confirmed the reality of something we had assumed was exaggerated:
- This process of acceptance, finding, training, and certifying a dog will take a minimum of two years. Read that again: two years – minimum.
Within 24 hours, my daughter was teaching me 'dream flexibility' – my dream and her dream of college had just been put on hold though it felt more like the dream had crashed. This was only college – now in delay mode. But, it felt like the world was crumbling despite my years of saying that college is wasted on the young and how much better it is to go with more maturity and more depth perception.
I said that. I meant that. But my kid was ready. Had been ready. She was a dreamer. And a pursuer. And a doer. She was prepped with her film production classes. She knew what she wanted. She had a plan.
And now she is doing something else. First.
We don’t know exactly how this will all play out. Her preferred school kindly allowed an unprecedented 2-year deferment. (Though we will have no idea until then whether financial aid will make it affordable as we will have to refile all the financial aid papers …)
Perhaps this is for the best so that she can work on her health and continue to focus on her search for and training of her dog while finding part time work and public transport to assert her independence.
Typical of my daughter, she was perfectly fine with the new plan that fell upon us so quickly. I was turned into a sad, confused mothering mess, worried about the change for her and (selfishly?) worried about the change for me.
That lasted one day. Then my daughter remembered that she was human and she cried and went into a funk.
We talked. And we shared our fears and our tears. Our old dreams. Our still-forming new dreams that we will soon call “plans”. Hers. Mine.
She is raising money through GoFundMe and once again teaching me something: humility and gratitude beyond what I thought possible.
Flexibility has been the most valuable parenting lesson that I’ve learned.
Believing in the generosity of strangers is another.
And the lessons my kids teach me keep coming at me.
I am just lucky to have such great teachers.