Once again, I've got about a dozen different posts I've been working on trying to pull one completely together, and once again I'm pulled into an entirely different direction with my vulnerable heart and mercurial mood.
I've not had a bad past couple of weeks, in fact, I've gotten a lot done around the house, finished up all of Griffin's doctor's appointments for the year, watched him continue to make progress and get better and better with each day, and just spent time being fully present with my family and catching up with a couple of old friends. It's been good all in all. But I've struggled a lot emotionally too.
So here it is:
My grandma has taken to watching old western shows faithfully every morning. She's never been much interested in these types of shows so this new love kind of took me by surprise and I didn't get it at first. She and I have always been more of British slapstick kinda gals.
But then I thought a little about it. They've always got a hero, who always saves the day, in a world where good and justice always prevails, and the story always ends on a good note. After the year I've had, I see the appeal.
Kind of like my grandma’s cowboys, there's this poem called "Welcome to Holland" by Emily Perl Kingsley that it seems almost every special needs parent clings to, especially in the beginning. It really is a great poem, and it really does give great and much-needed perspective on things when you are slammed upside the head with a diagnosis you were ill-prepared for; when you're handed a child whose health will change everything about, and the entire course of your life, for the rest of your life. I highly recommend you read it if you haven't. It's something that can apply to any person, not just those of us with special needs kids. It reminds us the power perspective has on a life and situation, and that that power is completely in our hands.
But...(I know, there's always a but with me.)
It doesn't talk about what life is like in "Holland" once things have settled and you've started to create a new normal. It only leaves us with that powerful sentiment above, and then we feel obligated to stay on that positive note because surely everyone else is able to do that too. And I'm sure life is different in "Holland" for everyone, but these things I think are probably across the board for almost all of us:
*Holland is a lot of work, and you don't sleep much. Parenting a medically complex child is a 24/7/365 job. You do not get a vacation. You do not get a lunch break. Most people are terrified to try and help (and who could blame them?) so you never get any real true rest. You just go and you go.
*Because you don't sleep or rest much, Holland is a place of deep emotion and little self-control to contain it. I used to pride myself on how in control of my emotions I was, how level-headed and self-restrained I was before speaking or acting. But once you get to Holland? You feel like you're constantly crying, on the verge of crying, or want to scream at everyone on a dime; or you are busting at the seams with joy over the progress being made or a small moment that has come to pass you did not think would. There is no middle ground, no cruise control, no moderation. It's just all or nothing, and that in and of itself is exhausting.
*Holland is isolating and lonely. You watch everyone going to all the lovely and exotic places of the world, living all your dreams, taking pictures on white sandy beaches and far away places...and there you sit in your own little corner of the world where nobody wants to sit with you for too long and nobody really understands it. Even people going through it won't really get it because perspective and personal experience play such a large role in this life.
*Holland a lot of times feels like it might as well be Antarctica - vast and endlessly the same scene and weather that's probably never going to change. You still hope, but it's a different, more reserved kind of hope. Your dreams are not so big. That happy ending you believed was coming is not quite so rose-colored and perfect anymore, because for the rest of your life you first have to consider the extraordinary circumstances for your child, and eventually who will take on your role when you are no longer here.
*Holland is beautiful, but few people come to visit. You find out who your real friends are really quickly. You learn your place in the hierarchy of people's lives and time. And it's all really understandable and humbling, but it's seldom a pleasant or gratifying experience.
*As time goes on, people stop even thinking about Holland and you never know if you should invite them or not. People will tell you they are trying to give you space, they know you're busy, or anything along those lines. And I'm sure some of that is true sometimes. But as the saying goes, "out of sight, out of mind." Leaving your home is a monumental task, so you don't go anywhere you don't have to. Nobody wants to come sit in your home that's more like a hospital than a living room and is uncomfortable to navigate. Few people even know what to say or how to relate to you anymore, so it just makes it all awkward and not so easy as it was before. If you’ve got a kid who is immune compromised or extra vulnerable, even if you want to invite people you are forever left in the predicament of ”if you should“. So you just sit with the memories for company instead.
*Holland has a lot of really rude people with no filter. You'll get this anywhere and everywhere, no matter what the situation is. But try walking around with a child on oxygen, or who has a feeding tube and needs to eat while you're out, or is in wheelchair. People don't very often come up and ask you how old your child is or comment on how adorable they are - they just ask you "what happened to them?" or "how long will they need all that stuff?". And in your head you will snidely shout to yourself, "STUFF?! Do you mean all this life saving equipment that is keeping my child healthy and here? Yea, not sure how long he'll need that." But you won't say any of that; no, you'll just smile sweetly and softly say, "hopefully not too much longer." You'll look at all the parents around you who have children the same age as yours (and it will suddenly seem like EVERYONE has a kid your age, kind of like when you buy a new car and all of a sudden you notice how many are actually on the road), and you'll see the interactions they are having with strangers and you'll feel that pang in your heart every time that you were robbed of that. You'll find that all you wish for is to go out and everyone not stare at your child, that you can just grocery shop with ease and in peace.
*Holland is slow. There’s a lot of repetition, a lot of routines, and progress is almost always made in itty bitty tiny steps. Instead of the fox you always were, you’re forced to learn the importance of being more like the turtle.
The poem goes on to say, "The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned."
That's true, and even with all the aforementioned I would not trade my child or my life for anyone or anything. Most days I find things to love about my new life and be grateful for it, and I'm thankful for the ability to do so.
But it still is what it is. It's not where we planned to go, nobody is going to ride in and save the day, "fair" and "just" are not words that any longer exist in our world, nobody can fix it. We were just unexpectedly and unceremoniously dumped in a completely foreign place with no hero or white horse to count on.
As I read all this back I'm struggling to even post this one, because while it may be where I'm at lately, it's not as bleak as some people may interpret this to be, and I am not always in this place. More often than not, I'm grateful for the unexpected detour, hard as it is, because I see and savor and feel the things that matter most. I ended up somewhere I did not know I needed to be, or that I would belong so well here. For all of that, the rest is endurable. But I'm going to post it, despite all of that, because I want anyone who ever feels this way to feel validated.
There are two sides to every coin, a yin to all yangs, shadows that come with all light. And that's ok. It's ok to feel what you feel and embrace your moments of weakness and hurt and loss. It's ok to feel both the good and the bad and be open about it. Can you stay there? No, you can't, nor should you want to. But you can visit it and feel it and move through it until you come out the other side. You can allow yourself to not love "Holland" sometimes, and it's ok to wander and want for another place for moments here and there.
Just remember to always come back home and find some kind of peace and happiness where you have been asked to be, with what you have been gifted with. It might be hard and it might not be what you chose, but more often than not it is exquisitely beautiful and, in the grand scheme of things, better than any place you had planned to go.
And as my grandma has so wisely taught us: it's ok to watch old cowboy shows until you get to that space.
Photo by Jaime Reimer from Pexels
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