I recently wrote about the secrets special needs moms won't tell you, but heard from many special needs fathers that they felt left out. My husband, Zoe's Dad was my inspiration to write about what I know about special needs dads.
We are in the kitchen, my husband and I, cleaning up after dinner and talking about our day. I am telling him a sweet story about Zoe, a challenge she encountered. The story ends with success and as I happily share the outcome, I look to his face for the approval and excitement that I know he will offer, his endless encouragement something I rely on. Instead, I see he is still working through my words, that his face is still, caught in the moment when Zoe was vulnerable and unsure of her abilities, and in that few seconds, his face fills with pain and I see the heartache I know he lives with.
1. Special Needs Dads suffer silently with broken hearts. These dads are productive and they find their daily dose of happy, but that doesn't mean they don't carry heartbreak around. They had a dream that turned out differently too. I watch my husband wipe away single stray tears at unexpected moments. I can feel the grief in his quiet breathing at night, when he is awake when he should be sleeping. I feel the heaviness in his heart when we talk about the future and his fear that he won't be here for this child of ours. When other men hear him speak in detail about our amazing child, often, there is awkward silence, or even apology. Most men we know can't talk about disappointments, differences or delayed development as well as the moms do.
There are stories I have had to tell my husband, after-the-fact stories that detail the way our daughter cried, or when her eyes just filled with tears and her lip started to quiver. Stories about the way a needle hurt during a hospital stay, or how someone's words made her sad, or simply the way another child stared -- or even how an adult unknowingly made something difficult for her. In moments like these, my husband goes silent and tense, he controls his outrage, he holds back his anger. His simple response is deeply meaningful: "I wish I could have been there."
2. Special Needs Dads struggle with being the protector. This is something dads cannot successfully do -- protect their families from harm. There are too many physical forces beyond their control. Special Needs Dads also have fate getting in their face, 24/7. Fate that comes to call in the middle of the night, in the form of a physically sick child. Fate on the phone with a new diagnosis. No matter how many precautions they take, how physically present they are, how hard they work to support their family, even how hard they try, Special Needs Dads will see their child and their family experience pain, over and over and over again.
I am in the kitchen, laying out the medicine tray for after dinner, when my husband starts telling me a story about work, something I am interested in and excited about. Zoe interrupts him mid-sentence. At the end of the day her words slur with fatigue, but she wants to tell her Daddy something, so we stop and wait while she tells her story. In the middle of the night Zoe calls for me, sometimes hours after, and I will feel my husband's hand on my shoulder. I have fallen asleep in our daughter's bed, and he has awakened, and is unable to fall back to sleep. He needs me too, and waits without resentment, while I take care of our daughters first, before coming back to him.
3. Special Needs Dads are strong. Our family life can be lonely and although we steal our moments together, much of our marriage is about what is best for the health of our children first. When we consider stealing away on a weekend vacation, our hearts hurt when we think of leaving our kids behind, and what could happen in our absence or if tragedy struck, to them or us, taking us both away from our kids. Special Needs Dads choose to put their family first, and are strong about doing what needs to be done. This is the strength that fuels their dedication. Maybe not all Special Needs Dads started out this way, but there is little room for selfishness with such strength.
There are times when I overflow with worry, trying to plan and prepare for every challenge our daughter might encounter. I see roadblocks where my husband sees opportunities, and at the end of the day, when I am weary and out of words, my husband opens his arms to my daughter, she crawls into his lap and while he holds her, he talks about his own life, how he always tries his best and why she should too.
4. Special Needs Dads learn how to be life-long leaders. Leaders empower. They spearhead change, advocating and working hard to make a difference. They empower their children, encouraging them to do more and believing they can do anything. These leaders continue to learn -- about their child's disability, about their child's needs, about the world around them. Leaders are responsible; they do what is best for their families, they choose the harder path.
"Daddddddddy," Zoe calls from her bedroom. My husband walks down the hallway, answering her demand. "How was your day?" she asks eagerly. She wants details then, so my husband provides them. She asks silly questions, and he patiently answers each one. "I missed you today, Daddy, and I love you" she vows. He easily, sweetly returns her I love you, something he says to her each day. Bending down, he touches his lips to hers as she reaches up for him.
5. Special Needs Dads are vulnerable. They love actively and affectionately. Often, their touch is the sole communication, a love language they share with their children. Loving this way comes from an open heart, a trusting heart that is left open to hurt and pain.
"I miss Daddy" Zoe tells me. It is bedtime and her dad is out of town, something that seldom happens. "It's not the same, when he is gone," she sighs, laying her head on my chest. She is missing his laughter, the way he gathers her in and holds the gift of her close.
6. Special Needs Dads live life with purpose and perspective. My husband has found his work /life balance, choosing to be present for his family yet still feeling the constant pressure to provide. Daily, he embraces the simple gifts in our life: emotions, our family love, even the food we prepare together. He has learned the value of each gift in life and how important a moment in time can be, how moments shouldn't be wasted or life lived with regret.
I hug her tight and try to soothe her to sleep, knowing there is nothing I can do to fill the space her Daddy holds in her heart.