Special Needs Parenting

Finding Faith And Friendship On The Special Needs Journey

The Email I Would Have Written Myself the Day Before Ben Was Born

by

Somewhere over the last 24 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 24 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.

Michael and his wife with their son on his graduation day

Read the entire post at Key Ministry for Families …

The following two tabs change content below.

Mike George

Mike is co-founder of SoaringFamilies, an online community focused on making a difference in the lives of families impacted by a disability so they can live more freely, more fully and with more energy. SoaringFamilies is about believing in a future that is bigger than the past, creating a world where all persons are accepted and included, and where every life is of equal value. Mike is also an author, speaker, and Inclusion evangelist but, most importantly, he is a parent of a young adult with multiple disabilities, and has invested a lifetime to helping him become the person he is meant to be. His first book, “Third Time Lucky: How Ben shows us the way”, tells a very personal story of our family’s determination to unleash the smart, social, loving son who was trapped deep inside a spastic body. Visit https://www.soaringfamilies.com to learn more.
%d bloggers like this: