Somewhere over the last 20+ years, I lost the yearning to dream what life would be like had Ben been born without complex physical and communication challenges.
There was a period when I constantly wanted to press the rewind button to return to a simpler time, to before Ben was part of our world, so that I could understand what I had done so terribly wrong to deserve the burden of raising a child who required 24-hour care.
I am thankful those feelings have evaporated and that my singular focus now is to only move forward, to build on Ben’s successes and help him live a life of fulfillment and happiness.
Occasionally, I do wonder what better progress we could have made if we knew then what we know now. I imagine somehow going back to the day before Ben was born and secretly sending an email to the 29 year old I once was. It would look something like this:
From: Mike George
Sent: Tuesday, June 28, 1992 11:29:03 AM
To: Mike George
Subject: A Personal Roadmap
Hey Mike! Tomorrow you will be a father once again which is stating the obvious, of course, since Jan is scheduled for a caesarean at 10:00 AM. The birth of any child is a blessing and a wonderful gift, for sure, but your/our new son’s (Ben) birth will be extra blessed.
Why I am sending you this lengthy email is rather complicated, just like what your life is about to become.
This email is to both prepare you and console you, but also to ultimately tell you that everything will be alright.
What will be alright, you ask? Well, there’s no getting around the inescapable reality that tomorrow will actually be the worst day of your life.
I mean, THE WORST! I know. I was there.
An hour after Ben takes his first breath, a neonatologist is going to tell you/me and Jan that he is very, very sick. Quite matter-of-factly, she will predict that he may not live the day since he will have to battle with an enlarged liver, an enlarged spleen, a head that is too small, and platelets that are dangerously low.
I know this doesn’t make much sense to you now and I’m sure you don’t believe any of it.
At about this time tomorrow, once you realize how dire your situation is, you will also discover that no one will have any answers to any of your questions.
Not Ben’s paediatrician, not the 3 physicians in your/our family. No one.
You will feel abandoned, overwhelmed and ready to explode. You/I will want to run but there will be nowhere to run to.
I can tell you with 100% certainty that all of the pain that is coming your/our way will be the best thing that will ever happen to you/me.
I have seen you/me develop over the next/last 20+ years and the outcomes are nothing short of transformational.
I know this is all too much to grasp but as you stumble your way through the next week, the next month, that awful first year that is before you, I want you to learn and remember these 10 guiding principles.
I learned these that hard way but they have provided me the perfect roadmap through life’s wilderness. If you follow these, I bet you’ll achieve more than I did:
This one will take a while to believe and understand but it’s probably the most important piece of advice for your long term happiness. Once you do, you will never take anything for granted nor ever consider anything typical or ordinary.
You will see things that so few people actually do – prejudice, indifference, inequity, suffering – and rise above them all, though it won’t be easy.
You will see all persons first as people, as children of God (assuming you aren’t too angry at Him for allowing this to happen). Any faults and disabilities they have will be second.
When you ask how you should take care of Ben, a wise person will tell you to just love him like any of your children.
Eventually, you will realize and defend that every life is of equal value.
There will be too many of them of count and they will put much doubt in your mind. Some “experts” will even go out of their way to tell you all the things that Ben won’t be able to do and claim that he has little potential.
Unfortunately, most people view the world in terms of problems and deficits. The news cycle thrives on this.
The medical community will want to try to “fix” Ben because that’s how they were trained (just ask your/our siblings) and when they run out of “repair” options, they will tell you that there’s nothing anyone can do to help you … which is not true, of course.
On day 4 of Ben’s life, you will be told that he will likely never walk, talk, or go to school!
That phrase will stay with you forever.
However, you will witness Ben graduating from high school and go on to succeed at the University level. That accomplishment will become a beacon of hope for so many families around the world. It will prove to you that you cannot dream something up for which there is not a path to get there.
Ben will teach you lessons about life without uttering a single syllable.
His voice will be as loud as your willingness to listen to it.
If you let him, he will unleash a passion in you that you never knew you had. You will travel to places you had never planned on visiting and share these principles with thousands of people to make their lives better.
Trust that Ben will show you the way to achieve all of this. When you do, you will feel a heightened awareness of how abundant your/our life has become.
Providing Ben with even the most basic of support will cost a fortune, at least $100,000 per year. I didn’t really understand this until years later.
Running a deficit will be a way of life, not because you can’t manage your money but because you will be faced with impossible decisions before you’re ready to make them.
No bank is going to look on you kindly and some will treat you as a credit risk.
The choice before you repeatedly will be to either provide Ben with the right stuff while sinking further into debt, or tell him you don’t have the $7,000 for that stander he needs even though you know it will help him develop the physical strength necessary if he is ever going to learn to walk.
None of this will be your fault. Accept it and believe that things do turn around.
It took me 19 years to figure this one out but it is so motivating and so life changing. It starts with feeling that you’re worthy of dreaming big.
When we’re young, our parents and teachers will tell us that we can be anything that we want to be. As we get older, those same people tell us to lower our expectations and be more realistic. We mistake that for wisdom and begin to contract.
You will not need anyone’s permission to help Ben achieve his hopes and dreams so find out what they are.
Ignore that learned voice of internal judgment that we all have where we look to conditions of what we can be (or what Ben can be) and what we can have. That voice is limiting, it’s oppressive, and it will sap your energy.
Ben is not different from anyone else.
He wants to love and be loved, he wants to learn, to play, to interact with his friends, to be included, and to contribute. How he approaches life is more dramatic because of his disabilities, but so what?
Ben will understand everything that you say to him even though he won’t respond. You must believe that he has the capacity to learn if given the right opportunities and the right environments.
If he is not learning, it’s because we don’t know how to teach him. Don’t ever doubt yourself on this.
You must always assume that he is a genius trapped in a body that doesn’t work.
Ben is not his body (even though that’s all most people see) – he has a body. He is not his disability – he has a disability.
Ben IS a life force whose purpose and dreams need to be realized.
There will be times when the seriousness of his medical issues will make any notion of greatness seem impossible. Those days will be all consuming, overflowing with anxiety, fear, and emptiness.
Remember to believe that his future is bigger than his past.
Tomorrow the sun will rise, so who knows what the tide will bring? (Watch the movie Castaway when it’s released and you’ll know what that line means). Ben will surprise you/me.
I guarantee it.
A future friend of yours will tell you that we all live in the language we speak.
If all we talk about are the things Ben can’t do, then that’s all we’ll see. Everything will be framed in terms of his disabilities. We will never give him the opportunity to learn how to walk if all we see are his physical limitations.
The universe amplifies what you focus on – positive or negative – giving you more of it. Rid yourself of talking only about Ben’s problems or what you don’t have.
Ben’s world is not about pity, or deficits, or why something can’t be done. It’s about changing your/our language to describe Ben.
This is not going to be easy since we are all governed by conditions and limits and constraints.
Once you start to see your world in terms of abundance, opportunity, development, and growth, it will make you more available for greater things.
Believe that Ben has a vision ready to be realized.
The people you expect to be closest to you in difficult times won’t be able to provide much support at all. Your/our family will fall into this category.
Some won’t know how to help, some will be trapped by their own fears and prejudice, some will ignore Ben (that will be the toughest to deal with), and some will completely disappear.
Take solace in the fact that you are not alone.
Keep searching for your/Ben’s champions – those who can see beyond his disabilities and can help you along the way. They will show up at exactly the time that you/I will need them, bringing new energy, new ideas, new teachings, so be patient.
Start building your/our network of champions now.
This will be a seemingly impossible task but, as you get older, it will essential.
I think that’s why you/I were given Ben before the age of 30, since the first 10 years will beat you/me to near exhaustion. Being chronically tired is going to be a way of life, unfortunately.
I haven’t found a fix for that, yet.
You will need to watch this carefully and find a way to stay fit because his care will be physically and emotionally demanding.
You will also discover that when he can’t sleep, neither can you, and when he isn’t feeling well, he will outlast you with his ability to not close his eyes for 72 straight hours!
None of us get a choice about creating a life, about taking that next breath. Those are involuntary.
What you do get to decide is whether you will live your life by default (what the experts decide about Ben) or one that you both design.
If you look at the leaders (not the political kind), the war heroes, the sport champions throughout history, they all have one thing in common.
They all asked themselves, what’s the most I can do?
They didn’t ask what was the minimum they could do and still win the Stanley Cup?
If you continually ask what’s the most you can do, your life will change, expand, become fuller, freer, and draw you closer to the person you are meant to be.
So, every day, ask yourself what one thing could you do today – just one thing – that would really help Ben? How long did it take you? 5 seconds?
There will be times when, spiritually, you will have a moment. Not when you’re in church, or when you’re praying.
But when Ben walks across that stage to receive his high school diploma, you will have a moment of sheer exhilaration and peace!
When you feel the whole world could fall down and everything would still be alright.
Why does that happen? Because your spirit is growing, developing, expanding.
This will build a greater awareness of who you are and make you available for greater things.
As Mother Teresa wrote, “Give the best you have, and it may never be enough. Give your best anyway. In the final analysis, it is between you and God. It was never between you and them anyway.”
You really have nothing to lose.
Talk to you later!
Learn the strategies that Ben has taught us to build our coping fitness!