As they gather information and create a plan to move forward, expectations evolve along the way. I heard a story at an event, probably a decade ago, that I frequently recount. A man (involved in professional athletics) adopted a child. He envisioned his son playing Pee-Wee football, becoming the high school quarterback, going to college on an athletic scholarship and one day playing in the NFL. As a toddler, his son was diagnosed with autism and was mostly non-verbal. The greatest day of this dad’s life (which he said even trumped the idea of his son winning the Super Bowl) was hearing his son say, “I love you, dad,” for the first time. He explained how he worked through his son’s diagnosis and realized what would really define his role as a father – being able to love and support him unconditionally.
We asked a handful of fathers – what’s different about your journey, compared to a mom’s, in raising a child with complex medical needs? Below, we share with you the voices of some of the dads in our community. Though their experience is often different than mom’s, one thing remains the same. They love their children and families with everything they’ve got – and there is nothing they wouldn’t do for them.
I’m not sure they always receive thanks and praise for the work they do as dads. But Father’s Day seems as good a time as any to come together and appreciate our dads for their superhero status!
"It all depends on the role. I'm at work all day and not doing the all-day/everyday stuff. If my wife were the breadwinner, I'd be out searching for connections to find help. However, the nature of a guy is to try and solve it themselves. My wife is more of a nurturing type. I want to solve it. There are always all kinds of exceptions to this." – Michael
“Will she ever drive a car? Will she ever get married? Will she ever be able to live independently? I fear the hurt she will experience if she doesn’t catch up and is tagged as ‘different’ by other kids in this harsh world. I am scared about finances. Finally, I fear what will happen to my daughter if anything were to happen to my wife or me.” - Jonathan
“You must be strong for everyone – your wife, your other children and the child who is sick – all while trying to suppress your own emotions. It's in a father’s nature to protect their family, but when your child is fighting for their life, there is nothing you can do to help them. You are left watching them slowly slip away and you feel helpless. Having my son has truly helped me to appreciate the little things in life and take nothing for granted. I wish I could take away the pain and struggles my son has had and will have, but I am grateful for the life lessons learned from them - not only for myself but for my other children as well. It has taught them empathy and caring for others and provided them with an appreciation most children do not understand.” – Matt
“Many of the posts in online support groups begin with, ‘how many other moms ...’ so a lot of men don’t respond. My wife and I both work full-time and both care for our son equally. His diagnoses have been hard and I talk about them with many people. I sat in the PICU with my son one day while my wife entertained our 2-year-old. I know mothers have special bonds with children but men also have their own bonds, too. While I do agree that I needed to be ‘strong’ for my wife and family, my wife was equally strong. We picked each other up and continue to do so.” - John
“I have observed that dads suffer from denial a lot more than women do. But the dads (that stick around), I think, are more concerned with their responsibility and ‘what’s next.’ Work is a double-edged sword. Many times, dads concentrate on work and you have two good people living apart while living together. I always strongly encourage dads to stay involved. My boy had a great many medical issues. Still does. And, of course, it changes your life - but this isn’t about the dad, it’s about the kid. As a dad, you do what you can to meet your kid’s needs, medically fragile or not.” – Michael
“A lot of times, fathers have to be the strength of the situation all while keeping a positive attitude. When we do get the chance to talk with others, we often reply with an ‘Everything is Fine’ statement - my go-to statement when dealing with conversations regarding my child's health. It helps remind me that everything will be okay and it keeps my focus on something positive regardless of what we may be facing. Most fathers stay strong without even thinking about it. We worry if we don't stay strong, the situation may somehow get out of hand and that we may lose control. We focus on what the overall goal is - to see our children able to play be at full strength. With my daughter having her health issues, it's made me really appreciate life. Sometimes we take for granted the things that we may see our child do, like walk, talk, laugh, and play. Until those moments get snatched from us; and all we are waiting on is to hear that laugh or see that smile. We need to hold on to the moments that create laughter and bring forth joy. These moments that keep us pushing forward, even in times of trouble.” – Demetrius
“Men didn't really talk to the other men at the hospital. We would acknowledge familiar faces in the hallway or cafeteria, but we didn't socialize (didn't really want to). On the flip side, two moms who met in the elevator talked and eventually hugged each other after telling their stories to each other. I had to be rock steady and keep things as light as possible, even though my heart was being shredded seeing the family and Grace in such pain. The feeling of helplessness to assist, when we had to endure really bad times was brutal. Now, I think about family more than anything else.” – Don
“As a dad, you want to provide, care for and protect your family. It is hard to find yourself powerless at times to fully comfort them or to take away their ailment. You feel the need to always be strong for their family, but we love our kids and want the best for them and are not without emotion and reaction to their condition. There are times when we are scared or sad because of it, but it is tough to feel like we can share or express that. Having a child with a chronic condition keeps us in prayer and helps to keep our priorities of family, love and cherishing each moment.” - Mike
“I have been blessed with a wish kid. My daughter has taught me to let go and to give all of myself to her - that anything is possible and to never give up. She likes to say, "Persevere, dad!" She has also taught me so much about faith, love and strength.” – John
“It was especially challenging as a military dad because I felt I was leaving my wife to do a majority of the care for our daughter during her leukemia treatment. I felt guilty even though we as a family knew that it really wasn't a choice but a necessity. My last deployment while my daughter was finishing her last few months of chemo was heartbreaking for me. Being a man makes it more difficult to express those feelings because we are expected to be the emotionally strong one and rock for the family. Watching Olivia beat cancer and her bravery while undergoing chemo was awe-inspiring and has changed me forever. I am so proud to be her father.” - Richard