Diversability

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Diversability is an award-winning movement to rebrand disability through the power of community.

The email I would have written myself the day before my son was born

This is a guest post from Mike George of Third Time Lucky.

Somewhere over the last 22 years, I lost the yearning to dream about 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 I could understand what I’d done so terribly wrong to deserve the burden of raising a child who required 24-hour care. I’m thankful those feelings have evaporated and that my singular focus now is to only move forward, to build on Ben’s successes and to 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 secretly sending an email to the 29-year-old I once was the day before Ben was born. It would look something like this:

From: Mike George

Sent: Tuesday, June 28, 1992  11:29:03 a.m.

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 a.m. 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’m 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 to ultimately tell you everything will be all right. What will be all right, 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 and Jan that Ben is very, very sick. Quite matter-of-factly she will predict that he may not live through the day since he will have to battle with an enlarged liver, an enlarged spleen, a head that’s 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 answers to any of your questions. Not Ben’s paediatrician, not the three physicians in your family. No one. You will feel abandoned, overwhelmed and ready to explode. You will want to run, but there will be nowhere to run to.

I can tell you with 100 percent certainty that all the pain coming your way will be the best thing that will ever happen to you. I’ve seen you develop over the next 22 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, I want you to learn and remember these 10 guiding principles. I learned these the hard way, but they’ve provided me the perfect roadmap through life’s wilderness. If you follow these, I bet you’ll achieve more than I did:

1. Embrace the tremendous gift you’ve been given. This one will take a while to believe and understand, but it’s probably the most important piece of advice for your longterm 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.

2. Ignore the naysayers. 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 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 siblings), and when they run out of “repair” options, they will tell you there’s nothing anyone can do to help you — which is not true, of course.

On day four 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 graduate 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.

photo of mike and ben

3. Let Ben birth you into the person you are meant to be so you can help him become the person he is meant to be. 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’d 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 life has become.

4. Accept that you will face financial hardship for many years. 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’s ever going to learn to walk. None of this will be your fault. Accept it and believe that things do turn around.

5. Believe in a future that’s bigger than the past. It took me 19 years to figure this one out, but it’s 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.

6. Assume greatness, expect greatness. 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 you say to him, even though he won’t respond. You must believe 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 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 – hehas 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. I guarantee it.

7. How you see the world and the language you use will determine how you live your life. A future friend of yours will tell you 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 language to describe Ben. This is not going to be easy since we’re 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.

8. Find your Champions. The people you expect to be closest to you in difficult times won’t be able to provide much support at all. Your 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 you will need them, bringing new energy, new ideas, new teachings, so be patient. Start building your network of champions now.

9. Get some rest. This will be a seemingly impossible task but, as you get older, it will essential. I think that’s why you were given Ben before the age of 30, since the first 10 years will beat you 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.

10. Continually ask, “What’s the most I can do?”  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? Five 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 all right. 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 world the best you have, and it may never be enough. Give the 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!

-MG