While our book and website focus primarily on the concerns of pregnant moms expecting a baby with Down syndrome/Trisomy 21, dads also play a vital role. Sometimes dads have unique questions based on their specific responsibilities as fathers, so it can also be helpful for them to receive support and hear the stories of other dads.
There is a national group specifically for dads called Dads Appreciating Down Syndrome (DADS), and about 55 local groups across the country have a DADS chapter that hosts monthly meetings to provide a “safe forum for sharing, bragging, learning and growing with other fathers who truly understand.” Read more about what happens at chapter meetings.
The best memoirs ever written by fathers of children with Down syndrome are The Shape of the Eye by George Estreich, Life as We Know It by Micheal Bérubé, and An Uncomplicated Life by Paul Daugherty. All these books are wonderful, smart, and honest.
One of our other favorite resources for dads is this video of a father and his teenage son traveling together and sharing the evolution from diagnosis to friendship (in Spanish with English subtitles).
Another father shares what he wishes he would have said about his son’s diagnosis of Down syndrome when he overheard a conversation in a store.
Columnist and author Paul Daugherty describes raising his adult daughter with Down syndrome and how fun and interesting life can be for families living with Down syndrome.
Competitive runner and FBI agent Heath White also describes how he and his wife struggled with a prenatal diagnosis of Down syndrome and then how his life changed after Paisley was born. They have run a symbolic 321 miles together, and Heath says, “I’m always gonna be there to make sure she gets to the finish line.”
In another video, a father speaks from the heart about those early feelings connected with hearing the news, and the progression of perspective, feelings, and knowledge. It takes only a few moments, but we think it will help you see a glimpse of the future:
(Please note that in the video the stat on divorce seems to be inadvertantly misquoted. Research does show that couples with a child with Down syndrome divorce at a lower rate than couples with typical children, but not as low as noted in the video.)
See Also: Adjusting to a Down Syndrome Diagnosis chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
Below are also some blogs by dads to give some insight into their perspective:
A designer/photographer dad in Utah shares whimsical photos of his toddler shown flying on That Dad Blog.
Dad writes candid essays at On Loving Lucy about the first year of his daughter with Down syndrome.
Dad, lawyer, and bioethicist Mark Leach writes specifically about prenatal testing at Down Syndrome Prenatal Testing.
Eric blogs about life with twins with Down syndrome.
An Uncomplicated Life, a blog from a dad describing raising his adult daughter with Down syndrome.
Ramblings of the Bearded One, a blog from a dad in Scotland who is also a photographer.
Our Jacob, a blog from a dad in Ireland.
South Dublin Dad, another dad in Ireland.
Letter from a Dad to his little girl, with cute pictures.
‘Norm Parker saved my life’ in the Iowa City Gazette Story from a dad.
Dad Bernard Marrocco writes in Canada’s Globe and Mail of the beautiful journey of life with his daughter Clare who has Down syndrome. He has experienced the uncertainty and fear of receiving a diagnosis, acknowledges the difficulties, and reflects on the fundamental joy of parenting Clare. It is well worth the read, especially for our expectant dads.
Expectant parents share their questions, concerns, and thoughts about fatherhood.
From Sherri, explaining how her husband was supportive and eager to learn after finding out about their daughter’s diagnosis:
My husband has been such a proud father to our little girl. He never blinked an eye with her diagnosis. When he finally left the hospital to shower after her birth, he dropped by our local bookseller and bought every book on Down syndrome he could find then walked back into the hospital room and announced Down syndrome was the Cadalliac of disabilities. His early question were about what her abilities would be: would she walk, talk, run, swim, drive, live a full life? Once reassurances were made, we moved forward taking it one day at a time.
From Jimbo, describing how he grieved after learning about his son’s prenatal diagnosis and how his love for his son grew during the pregnancy:
If someone dropped a baby with down syndrome off at your front doorstep with a note that said “I’m your son, please raise me.” would you? Our note was from Adele.
The first time Adele’s song “One and Only” ever meant anything to me, Brooke was 11 weeks pregnant. I was running with my iPod on shuffle. After seven years of trying, a 10-week miscarriage and then giving up completely, there is nothing more stressful, filled with sleep apnea and clawed-raw emotion than a first trimester. Not wanting to face the pain of miscarriage again. Not wanting to be fooled again. Not wanting to fall for faith just to come up dead inside … Every day of that first trimester is hell. At the same time there’s a very real part of you that is dying to celebrate every day because this time goddammit its the real thing. And whether that’s true or not doesn’t matter, you hold on to that fragile little thought bubble like its your own heart. And you’re on watch. Sleepless night of despair and utter joy strung together like Starbursts. Who knows what good hope is, but you muster it and you start shellacking your precious thought of this baby going full term with it. And each day, it’s a little more comfortable. A little more secure. A little more real to say, two simple painstaking words that people in Florida with 16 kids take for granted…”we are pregnant!” Because maybe this time … 10 fingers crossed…maybe this one time, please god even if it’s just this once … maybe this time it is the real thing.
But, probably not.
So, I ran every morning to keep myself as healthy as I could. Hoping somehow maybe god would see this and spare my son.
That’s when this song came on. Only it wasn’t Adele singing it. It was me singing it directly to my son. Daring him to be strong enough. Encouraging him to fight for me. Imploring him that I am worth it and will do my best to always be worth the fight. I kept running as real tears of hope and chills came over me and a full on sprint exhausted the moment. This song gave me more than hope. It gave me a mantra. A direct line to my son, telling him to hold on at fight goddammit; because this time it’s real.
I don’t have to tell most of you that Embry’s weren’t blessed with Harvard credentials, but god endowed us with willpower and a solid work ethic. Unfortunately, as a father, you are useless. All you can do is hope and pray for your baby, and comfort and support your wife to the best of your awkward caveman like abilities.
So, with my new and improved mantra I picked up the phone and called Brooke and said “I just spoke to our son. He’s fighting for us.”
Okay, I didn’t call her and say that. Life isn’t that bad of a writer. But I did tell her what the Adele song suddenly meant to me and forced her to listen to it herself. She understood. And all the sudden we had hope. Still quiet, but a different kind of quiet. More of a giggle under the covers as opposed to two people hiding under the floorboards.
To get through our first 12 weeks, like any good underdog, we just needed a good fight song.
And then we found out.
I had never heard of Trisomy 21. So when the doctor said it, I countered with my “go to gynos rambling on about uteruses and appointments and whatever else” nodding smile. I think, I may have even said, “great.” There’s something about the hydroponic lighting system, the Southern Living reading options and The View on a loop that exhausts me upon contact. The next time you see a man walk into a waiting room, watch his posture. Within 30 seconds, odds are he’s taken his last big breath and already slid into a wide-eyed coma.
Brooke leaned in, which is rare. She’s usually worse than I am. So, I knew something was going on.
The doctor restated in his thick Italian accent, “The baby has tested positive for Down syndrome. So…”
Waiting room coma or not, I knew that one.
I can’t tell you what else the doctor said. I felt, for the first time, that my childhood had caught up with me. Not the miscarriage. But me. I warped back to every moment in middle school that I walked behind the special needs line and pretended to walk funny. I thumbed through a Rolodex of me getting the cheap laughs I’d lived on for so many years by putting my hand up to my chest and waving my head side to side as if I was mentally handicapped. I couldn’t tell Brooke. But, this was on me.
I’d come to later find out that Brooke went into her own tailspin, blaming herself for being 40. The two of us sat there, speechless with guilt that we’d caused our perfect little miracle’s defect from just being ourselves.
“So … let me know what you want to do. I’ll give you a couple of days.” The doctor said as he escorted us out.
Brooke and I had a ritual. After every appointment, after every sonogram, we commandeered the same booth at Fromin’s Deli and ordered the most unbelievable omelet either of us had ever had. I don’t remember if we went that time. We probably did. But, I don’t remember. What I do remember is the thick awkwardness as we walked outside into the perfect day. The city continued as if nothing had happened. Birds chirped. Suns shined. Haters hated. Los Angeles continued as if the atomic bomb hadn’t just fallen on the city. That’s when it hit me. Despite myself, a bomb had not fallen on the city.
Brooke and I had already spoken about what we would do.
“Of course we’d keep it!”
But it’s different when it happens. Your perfect son fades into a life of burden right before your eyes. You imagine the worst. And, to this day, I think it’d be irresponsible not to. If you aren’t prepared for the worst, you shouldn’t have kids in the first place. But the health risks, the social realities … would he be able to live alone someday, marry, have a girlfriend, play sports … oh yeah Special Olympics. Good he’s got sports, that’s a start … our minds raced for the next couple of days. Oddly there wasn’t a whole lot of conversation. Brooke and I were pretty quiet as we dealt with the stakes. Individually we were wrapping our heads around the whole thing.
Then, amidst the disappointment and agony and I’m sorry but real pain that comes with finding out that your child has Down syndrome, I was driving to the grocery store and our Adele song came on the radio.
Only this time, it was different. Everything had changed. I didn’t know if I wanted him to fight now. I was so lost. Images of my perfect days at pee-wee football, surf trips where the two of us were kicking back after a long session, having a beer while he told me all about what being the first president in outer space married to Ms. America was like … it was gone. Replaced by images of ignorance. Images that I’m ashamed to admit. I had given up on the dream. And I had given up on him.
Then something happened. I haven’t ever experienced a truly magical moment in my life. I’ve experienced Disney and movie and even street magic, but this was different. Suddenly, the words in the Adele song had changed. They were no longer from me, begging my son to hold on and fight for me. They were so much more important now. Suddenly they were from him. Call me bat shit crazy but my son spoke to me through a f***ing Adele song outside the Vons.
I dare you to let me be your, your one and only
Promise I’m worthy to hold in your arms
So come on and give me a chance
To prove I am the one who can walk that mile
Until the end starts
I cried. For the first time I had heard my sons’ voice. And he was asking me to be strong for him, to fight for him, to believe in him. Everything I had begged of him, he was now begging me for his life, his chance, and who was I to say no?
Ryan Seacrest came on immediately afterward and almost ruined everything. I turned the radio off, did my shopping and came home with the biggest shit-eating grin.
“Babe! The Adele song! It’s not from me to Calvin, it’s from him to me now! Don’t you see, we have to keep him! He wants to live! He’s begging me to keep him! I really think we should keep him.”
My wife looked at me with the most confused look on her face, “Of course we’re keeping him. Were you thinking we shouldn’t?”
It hit me in that moment that Brooke was clearly a better person than me. She hadn’t been wrestling with the idea of whether we should keep him. She had been wrestling with the idea of how we were going to make it work. She had been calculating each stage of his life and how we were going to be able to give him the best of it.
I didn’t cry. There’d been enough drama and more than enough tears for a grown man. I gave her a quick kiss and told her I love her, still with my grin. We were going to have a baby. Instantly, that became the focus again.
That was the first time I made my son beg for my help. And it will be the last.
Welcome to our world, Calvin. It’s all yours.