5 Pieces of Advice for the Dad Who’s Expecting a Differently-Abled Child

The journey to get to where I am today has been beautiful. It has been imperfect, but it has been beautiful to look back and see what it took to get to where we are today.

Amy and I went through three years of “unexplained infertility” before finally having our lil’ Emmy. Three years of expensive bills, three years of countless doctors visits, three years of hearing “I’m sorry, it didn’t work,” three years of sadness not being able to have the child we both so badly wanted. When we got the news that Amy was finally pregnant, we were obviously thrilled, but I was always holding my breath because so much had gone wrong for so long that my guard was up.

Almost as expected, Amy received a call from the doctor with news that our baby would probably have Down syndrome. So much went through our minds that I cannot even begin to put into words. Looking back now, I’m embarrassed at some of the negative thoughts I had, but they were based on ignorance and emotion, not facts or reality.

Now I look at Emmy’s diagnosis as God saying to us, “Dude, I made you wait three years, so you would appreciate and accept what I was gifting you with. You’re welcome.” Emmy makes me happy, and I absolutely love being her dad. Yes, there was a fog of many different emotions between the diagnosis and her arrival, but on the other side of that fog was a child that changed my world in ways that I cannot do justice trying to explain.

But I get it. Learning your child has Down syndrome can be overwhelming. So, this Father’s Day, I thought I’d take a moment to encourage the dad who’s expecting a differently-abled child.

1.Don’t Look too Far Ahead.

When your child is 1 or 2 years old, don’t worry about things like college or who will take care of your child when you are gone. Of course, look ahead when it comes to estate planning and responsible adult stuff, but when it comes to your child, just enjoy every day and each step of your child’s life. Worrying about the future only robs you of the daily beauty and joy of everything. Slow everything down and just enjoy the journey.

2. Get to know people ahead of your journey.

Get involved with your local Down syndrome community as soon as possible, even before your baby is born. Get to know people ahead of you in your journey. You will see that there is nothing to be scared of simply by getting to know people who have done it and wouldn’t change anything.

You will also see that you are not alone, and in the process, you will make some friends for life. My group of dad friends call ourselves the “Warrior Dads,” and we hang out all the time. Jump into the Down syndrome community and see how wonderful it is.

If it is not possible for you to get involved with your local community or if there isn’t one, get online and follow along with people like Amy (@uplifeofemmyjoy) and me (@warriordadchris47). We truly love our daughter and our journey. Don’t be shy either, ask us questions, ask us for advice and see what our life is like. We are pretty honest and want to be helpful to others on this journey.

3. Be a rock: support and empower your partner when navigating the diagnosis.

If I’m being truly honest, here is what I would suggest based on my experience. Be a rock, be strong, be supportive, and cry in your car alone to and from work. I remember the instant Amy broke the news to me. She told me and immediately started crying. I knew that I needed to appear strong, even if I wasn’t. There will be moments where you can show weakness and your partner will be strong for you in return, but it is super important to be a man and take care of your woman.

I grew up on the spot. It was time to be a man, be strong, and make sure that my wife knew that she could count on me.

Something happened when I got the diagnosis of my daughter; I grew up on the spot. It was time to be a man, be strong, and make sure that my wife knew that she could count on me. She was scared and every emotion under the sun (and I was too), but she still had the important job to do of growing this baby and bringing it into the world. The last thing she needed was excess stress of me worrying.

Everyone is allowed to react how they feel is necessary, but it is very important to show support to the mother because — let’s be honest fellas — she’s the important one in the equation.

4. Don’t read anything.

One of the best pieces of advice I received before Emmy was born was “don’t read anything.” Unfortunately, a lot of the information out there is wrong or worst case scenario, so all that will happen if you read too much is be scared. I’ve been there and believe me, there is no need to be scared.

One of our favorite nurses in the NICU (we were there for 19 days with Emmy) said this to me in regards to our diagnosis: “You know, we are all on the spectrum somewhere.” I loved her comment because it made me see that diagnosis or not we all have our issues. Diagnosis or not we could all have heart issues or developmental issues or social issues or fill in the blank.

Unfortunately, there are some doctors out there who could use this advice as well. I experienced firsthand doctors giving us bad information and saying things that simply were not true. 

5. Show up.

“The key to being a good dad…well, sometimes things work out just they way you want. Sometimes they don’t. But you gotta hang in there, because when all is said and done, 90 percent of being a dad is just showing up.” -Jay Pritchett, Modern Family.

I think of this quote often when I get down on myself for not feeling like I do enough or am enough. I am not perfect, and I don’t pretend to be. There are days where I am not the best version of myself, but each day I still put on my dad pants and give it my all. Kids need love and interaction. Just show up for your kids because they are way more aware than anyone realizes. They know if you are there, and they know if you are there but looking at your phone instead.

All of that said, the most important thing I could ever tell any father is, just show up. Be present. Spend time with your kids. Love your kids. Being a parent of any child is a gift, but if you are lucky enough to be expecting a child with Down syndrome, get on your knees and thank the good Lord because you may not know it now, but you soon will — you hit the jackpot!

Being a parent of any child is a gift, but if you are lucky enough to be expecting a child with Down syndrome…you hit the jackpot!

Follow along with Chris, Amy & Emmy Joy as they celebrate the joy of “up syndrome” at Amy @uplifeofemmyjoy and Chris @warriordadchris47.