The following is a speech delivered by our president and founder, Allan Milford, during our recent fundraiser.
He Ain’t Heavy
Thank you, Joe, Nice job!
Let’s hear it again for Steven’s Godfather, Singin’ Joe Aiello!
He Ain’t Heavy is a Great song, isn’t it?
Have you ever listened to the lyrics intentionally? I always thought it was about anybody that needed a helping hand but in reality…, well, you heard the story. It was about a person that had special needs. He couldn’t get around without help. Someone who knew him came to his assistance. I like that song even more now.
Let’s look at it from the side of the person doing the lifting. That would be you. That would be me.
As introduced, I am the President and Co-founder with my wife Patty of the Smile of Hopatcong. We have a fantastic Board of Directors that you already heard from John Kedash, Mike Roome, and Chris Colabella. Our MVPs Scott and Susan are angels I think sent by God to help us. Not to mention the Administrator of the year Kim Koppenaal. I have to admit I’m proud of SMILE. But tonight, I’m speaking to you as a dad. A hard-working, family-loving dad. Affectionately known as Poppa Bear to our guys at SMILE.
Patty and I have three sons. The middle one is Steven! Come on up here Steve!
Let me tell you a little bit about the SM in our acronym SMILE. The Steven Milford Independent Living Experience stands on its own as a pretty cool acronym, right? But there's more to it. Steven was always into superheroes. Batman, Superman, Hulk, and Iron man. One day, the aid in his high school, told him that he too was a superhero of sorts. He had a superpower like no other. It was his wonderful authentic Smile. He told Steve that if he smiled at someone, they had no choice, they had to smile back! He would walk into a room and do this exaggerated smile (show them what it looked like). Let’s see if he still has it. Hit 'em with your superpower Steve! Let’s see if it still works! Beautiful! Ya still got it, kid. Go sit down.
My son Steven. My beautiful happy loving person is easy for me to love, for me to help, for me to carry. Through him, I have learned to truly love others with a load to bear. But I have to confess it was not always that way.
Our oldest son Bryan was born with a heart problem that needed two open heart surgeries in his first year of life. A funny piece of the equation here is my older brother was married to Patty’s older sister. That’s how we met! Anyway, their first child was born with a slight heart defect. So, when our son had a more serious one, we were concerned that something was going on there genetically. I chose a work assignment in Baltimore Maryland because we were doing a follow-up on Bryan's heart at Johns Hopkins Hospital. We explained our concerns genetically to them and they connected us with a researcher from the National Institute of Health in Washington DC. They were very interested in our situation and ran a bunch of tests. They told us that we were two strong healthy people and that although we had an issue with our first son the chance of us having a child with any health issues was one in a million! Go have children and do not worry!
It wasn’t long after that, my beautiful wife affectionally known as fertile myrtle, was pregnant again. The months went by and we followed all the prenatal care and advice they could recommend at NIH. Everything was going as planned.
One evening Patty got a phone call from a friend. She was also pregnant at the time. She said the doctor told her that she was going to have a down syndrome baby. She had the decision to make. She wanted to know more about it. So, Patty shared with her everything she knew about loving your baby no matter what. The friend calmed down and went through with her pregnancy. She gave birth to a perfectly healthy baby boy!
Patty gave birth to Steven. She was very happy. I was shocked. I was devastated! At first, living in denial. Maybe they’re wrong…. What Dr said that? Then I got angry…That was not supposed to happen! We followed all the rules. We did everything they said. We were supposed to be celebrating the birth of our child!
Family and friends came around us and supported us emotionally. After a while, I accepted the blow. Then the fear of the unknown took over. Would he read, write, run or even walk? Could he take care of himself? Could he be happy? Would he know that we love him? Would he be capable of loving us back?
I now believe that every parent of a child with special needs has had the same questions. The same fears. The same conviction of failure. What did we do wrong? After a time, we learned that our young adult children are a blessing. An absolute BLESSING that brings us so much happiness. A blessing that helps us to see the world differently. As crazy and mixed up and messed up as this world is, we see it through our loved ones and the struggles they have. It’s a more simplified view. Some folks get to cheer when their child hits a home run or makes the honor roll. We cheer to know they laughed at something or enjoyed playing with matchbox cars.
Having special needs can be a very lonely life. It’s probably something you haven’t thought much about. Most don’t try to talk much because they’re embarrassed. They may not sound like you or me. When they do talk to people, those that they are trying to communicate with lose patience quickly and move on. Leaving them alone again in their little world. Only to have the parent or health aid as their only point of communication. What happens when that parent dies, leaving the person they were caring for totally alone? After all, the last time I checked, the mortality rate was hovering at 100%. The loneliness. The one cold loneliness, that’s what breaks my heart.
Regular people don’t realize the impact that they can have with a simple “Hello” as they pass someone with a disability at the supermarket or on the street. Never mind stopping and complementing a hairstyle or piece of clothing they have on. Like maybe a Giants shirt.
Here’s a challenge: Let’s all choose to make a difference by walking toward someone with a disability instead of just passing by and deliberately trying to connect with them. I guarantee it will make YOU and them sparkle! Try it and see for yourself. Maybe try Steven’s secret weapon on them and give them your best Smile. See if that works!
Let’s get to the point.
You’ve heard it, you have seen it with your own two eyes. Steven has it great! He is set for life. He will always be taken care of. As well as Carl, Nate, Arthur, and Andrew. They have a wonderful life. The SMILE model, selective grouping by abilities that each has and not just throwing them together when their number in line comes up works. When each person has the same abilities, no one is disabled. They can live wonderful blossoming full lives. With Jobs and chores, and most importantly real friends to do things with like singing and dancing and carrying each other in small ways every day like when someone leaves their backpack on the roof of the van. <chuckle> I wish I saw that when Steve was born. It would have saved me a lot of heartaches. Remember Nate’s Statement “I have down syndrome and I think it’s great!”
That’s what we wanted for our son. That is what any parent of a young adult with needs would want in their hearts for their own. Not the bed government programs offer.
That’s why we work so hard to make that a reality. Not just for our son but for all that we can. That is our mission. Our goal. It’s an overwhelming thought because there are already so many on the list. It will take a lot of effort but if we can get the help we need, together, we’ll be the ones saying “he ain’t heavy”/ “she ain’t heavy” they’re just part of the family.
What you’ve seen and heard tonight is just a blip on the radar screen of all the things going on at one time as we gain strength to make that difference. Our second home, right around the corner from the first is well underway. We have shared with you our needs to help make that happen.
So back to our theme song for the night.
We’re all on this road somewhere, right?
WHO knows where this life is going to take you? Or someone you know and love. You may need something like Smile in the future yourself.
So now I’m asking. No, I’m begging you to help us today with all you can afford to help make that difference. If you came here today with a set number in your head of what you were going to donate, please, please think again. Invest in LIVES by establishing and keeping these homes running.
You are all here because you know the cause and you understand the needs. You are willing to help. I’m asking you to share it from your bank books. You see our needs to just get by financially.
The problem is huge… If everyone here gave all they had, it is still not enough.
I need you to please share more. Share what we are doing with your families, and your friends. Share with the people you meet. Maybe they have someone personally or know someone who knows someone who has special needs. Share with them who we are and what we are doing. Share with them to support us in any way they can.
It’s a huge lift but if we all help. All of us. It ain’t heavy.
Now please it starts with you each one of you to help lighten the load.
From the bottom of my heart.
Venmo = @smileofhopatcong