Thoughts From a Dad
”Mighty Maddie”

I’ve been extremely fortunate to have lived a pretty easy and privileged existence. Dealing with the usual adversity we all go through, but nothing truly life altering. Nothing that stops you in your tracks, leaving you to wonder “now what?” However, that would change in a matter of 45 minutes. And it started with this sentence… “We’re afraid there’s a problem with the heart”.

About a week later, our daughter was diagnosed with Tetralogy of Fallot with an A/V valve defect and Pulmonary Stenosis; as well as Trisomy 21 (Down Syndrome). Not to mention what felt like 1000 other things that could possibly go wrong.

For her, it would mean a minimum of 3 open heart surgeries to potentially fix…including one almost immediately after birth. It also means daily therapies, doctor appointments, and a very uncertain future. For us, well...It was the darkest months imaginable, to say the odds were against her would be an understatement.  

My wife Stacy was 5 months pregnant at the time. We would spend the next 3 months going to weekly doctor appointments and preparing for what was to come. About a month before her due date, we went in for her weekly Echocardiogram and wouldn’t come home for another 7 weeks.

Our Mighty Madisyn Lynn Binder entered the world on February 28th, to an audience of 22 medical professionals and her mom and dad. We should’ve known then that we had a diva on our hands. :)

We were able to spend about a minute with her after birth before they moved her to the NICU. And although it was short, it didn’t matter. She was here.

The hero through it all was Stacy. To this day I can’t imagine going through what she did. I don’t think many women dream about giving birth in front of an audience that could fill a small auditorium. Let alone all of the additional stress she was under. But she did it, and it was incredible to witness.

*Side note to all men…We have NO idea what mothers go through during these times. The idea that we should have the slightest opinion on their bodies and this process, is questionable and misguided at best.

During this time, Maddie would have 2 stents placed in her Pulmonary Artery because she wasn’t strong enough for the full repair. The team at Christ Advocate Medical Center and Children’s Hospital, provided amazing care and made us feel as comfortable as possible given the situation. We were also fortunate to stay at the Ronald McDonald House nearby. A truly remarkable organization. You can support them here.

After the 7 weeks, we were able to bring Maddie home until she gained enough weight for surgery. It was great to finally have her meet our other family and friends, especially her brother. Who could only visit the waiting room at the hospital during the entire stay. Unfortunately, our time at home only lasted for about 3 weeks. Her heart just wasn’t holding up and needed to be operated on ASAP.

Knowing your three month old daughter needs a complete heart repair to survive, is an out of body experience to say the least. It’s the type of thing you see on the news or experience through a movie. You feel terrible for the people going through it, but you obviously hope it would never happen to you.

Her surgery ended up lasting around 5 hours. I’ve never felt so helpless…and patience is definitely not a strength of mine. Very thankful to have so many of our family members there to help us pass the time.

I’ll never truly be able to thank the nurses, doctors, and surgeons, enough. These modern day heroes spend their days literally saving peoples lives. All while making you feel like family within minutes of meeting them. Providing the confidence and comfort you need to get by and remain hopeful. For us, it was the scariest day of our lives. To them, it’s just another day on the job. Grateful doesn’t really scratch the surface... After another 5 weeks at Christ, we were finally able to bring Ms. Maddie home.

While another heart surgery is approaching soon, her major repair has happened and it was a success! It’s taken 12+ months to fully recover, but she continues to make huge strides every day. She’s now crawling, babbling, laughing, and doing all the things a 1 year old does. We know future challenges lie ahead, but all we can do is focus on the now and make the best of it. Two steps forward, one step back. But that’s ok, it’s our new normal. And we’ll face it everyday with grit and a big smile.

What is a, “new normal?” I suppose it’s a little different for everyone. It depends on what life throws your way. Adversity seems to be the common cause. But when that day comes, you’re still left with the same question, ”Now what?” Our knee jerk reaction is to fight to get things back to what we’re used to, our comfort zone. But, what if the new normal brings blessings you hadn’t otherwise considered?

“ When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.”
- Henry Ford

Our daughter has several congenital heart defects and down syndrome…the deck has been stacked against her and yet she wakes up everyday with the same sass, energy, love, and determination to accomplish her goals. She has overcome more in 15 months than I have in 33 years. She epitomizes STRENGTH. She is the reason for our family getting closer, perspectives being changed, and more gifts that we don’t even know just yet.

It’s been hard, really hard. A lot of tears have been shed and anger expressed, but we’ve all grown because of her. We’ve learned our problems aren’t such a big deal, and the adversity we face is nothing compared to hers and so many others.

I’m not a doctor, scientist, genius, or millionaire. I can’t pretend to have any real answers. But I witness strength beyond means everyday of my life. I witness greatness every morning my daughter wakes up. What she deals with is not normal to most. But it is HER normal, and it is OUR normal. It isn’t perfect, and certainly not always positive…yet it has brought us more JOY in 15 months than we could have ever imagined. Our “what now?” is an adventure we couldn’t have imagined and wouldn’t trade for the world.

As we go through these times together, remember that only you can define your “normal”. Believe in it, fight for it, and never be ashamed. It won’t always be positive, and that’s OK, it doesn’t have to be. The key is that we never stop moving forward. We all have our own paths…Do your best to enjoy yours, and always…always…

Follow your arrow   >>>———>

“Together”

“Everything will be OK" "Stay positive”

On the surface, they're simply words of affirmations we share with our family, friends, colleagues, and neighbors. Typically a well intended gesture to brighten someone’s day. But sometimes, it’s just a little deeper than that. Sometimes, being “positive” isn’t what people need. Sometimes they need you to understand their pain, their challenges. They want you to understand. They need you to hear them.

I say this as a someone who is guilty of being that person. Too often saying, “But hey, think of the positives”. Simply just wanting to help make someone feel better, but failing to miss what was actually being said. What I hadn’t considered, was that sometimes telling someone to stay positive in dark times, can be the exact opposite of what they need/want to hear.  It’s natural to want to offer words of encouragement, and noble at its core. But if we forget to hear the person, their pain, their call for help, then our words fall flat. Because telling them the sun will rise tomorrow isn’t on the schedule…just getting through the day, is. 

It’s a reminder that sometimes, just listening, is the best advice.

In the past several months, we’ve bared witness to an all too common injustice. Watching the same shameful stereotypes and crimes that have continued for centuries. Yet we simply protest for a few days, weeks, or months. Saying all the right things, promising to make things better. Only to find ourselves right back where we were.

We didn’t LISTEN. We didn’t CHANGE. We didn’t DO BETTER.  

Colin Kaepernick’s mission was never about offending our service members, vets, or police. Let alone the flag... It was about bringing to light a very real problem that our family, friends, neighbors and co-workers face on a daily basis. But because so many chose not to listen (looking at us, white people), the message was twisted and contorted to please everyone’s narrative as they see fit. And the message went unheard.

“You have to acknowledge that there’s a problem, so that you can take more ownership for the problem.”- -— Emmanuel Acho
Host of “Uncomfortable Conversations with a Black Man” .

He’s right, it’s our problem, our debt. Brought on by years of hatred and prejudice from our ancestors, whether we like it or not. It’s continued to happen because we’ve yet to truly listen. Unwilling to admit the errors of the past, and work towards a better and equal future. We all have a choice, either let our differences continue to hold us back, or use those same differences to create solutions and move us forward as a society.

We all know this isn’t going to happen overnight. We have to fix a system that perpetuates these hateful ideologies. One that systematically holds people back, and prohibits them from the same opportunities as others. Celebrities and politicians can play a significant role in spreading the message and using their platforms. But the real impact will be made when all of us, finally decide that enough is enough. We have to change the way we talk, change the way we educate, and change the way we treat each other in our own communities. Let’s listen, let’s learn, and let’s take action.

Standing on the sidelines is no longer an option.

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Murals/Photos of downtown Aurora, IL.