by Brooks Brininstool
A Dad's Bond
We want to share an article by one of JourneyFEST's special needs dads, Brooks Brininstool. Brooks has written an article that speaks to a feeling many if not all parents of special needs kids have: What kind of relationship will I be able to have with my child? Read below to see the perspective that Brooks has to share with us.
A Dad's Bond
As men, we know there is a special bond between mother and child that develops before birth... and while a few of us can relate, most men seem apprehensive when it comes to their first child. I know I was. I was scared to death of babies and couldn't comprehend how much I would love that kid. In all honestly, I was scared to death that I wouldn't feel a connection with her at all. That just seems silly to me now...she’s 6 years old now and the light of my life!
In the last two years or so, I’ve met many, many parents of special kiddos. One of the most common ice-breaker questions is something along the lines of, “Did you know before he/she was born?" The answers vary widely anywhere from parents who found out in the second trimester, all the way to discovering learning disabilities years after their child was born.
But, something that is common to all of us, I’m sure, is the feeling we had the first time we realized that life wasn’t going to be typical for our son or daughter. That heartbreaking reality that sets in...and the scenarios we play in our heads. Will she ever walk? Will he ever talk? Or, in the tragic circumstance that we hear about all too often, what is her life expectancy? But, just as important, what kind of relationship will I be able to have with my child?
That is a moment in my life that I will never forget. June 4th, 2012. The doctor came into the hospital room and sat down... I knew at that second that this was going to be bad news. He proceeded to very gently explain to us how our 3-day-old daughter’s brain had not developed correctly... she has Polymicrogyria, meaning that the folds of her brain are small and shallow. At the very least, she would be severely delayed. She might have seizures. (She has, and they’re currently controlled.) Walking and talking? Who knows?
The second punch in the gut was the rush of emotions when I realized that I may never walk her down the aisle, teach her to drive, see her reel in her own fish...along with all of the other common things that daddies do. Equally as horrible, the picture we had painted to our then-3-year-old about having a little sister wasn’t exactly how we had portrayed it to be. I was terrified that I wouldn’t, or couldn’t, have the same relationship with her as I do with her older sister... and, as in love with her as I already was, I actually wondered if I would feel disconnected from her.
These are horrifying thoughts that likely run through the minds of most fathers of these special kiddos. But, as we are expected to do, we hold back... we assume the role as “the rock”, the foundation of the family. We comfort our wives and kids when the emotional toll of this unexpected path bears down on us.
I’m here to say is this: To the fathers of special kiddos... to the guys who are experiencing just what I described... that relationship will exist. It will be different... but no less special, and the bond will be as strong as any other. There is almost nothing more comforting to me than sitting on the couch, spending some quality snuggle-time with my daughter (now almost 2.5 years). She can’t sit up on her own (yet!)... she can’t always see me... but she loves to feel my scratchy face (and because of that, I refuse to shave my face clean)... and her only forms of communication are facial expressions, crying, and “squawking”, for lack of a better term, in different tones to express contentment and excitement. Her smile says “I love you”, her puckered lip says “I’m sad or hungry”, her squawk says “I’m happy!” and her gasp and frozen face says “I’m pooping!”
My point is, I know her and she knows me... it's not the same as watching tv, or playing games, or putting together puzzles or reading with my older daughter... but it's no less special. Our relationship is no less significant than any I’ve ever had. If you’re new to this, trust me, you’ll see...
A group of us at the PMG Family Convention in Florida dreamed up the idea of a fantasy island where we could all live... where we all “got it”... we all understood, and knew what to expect... and a place where our kids all had the best care possible without running us into the ground financially. (Along with fantastic diving and fishing... and fruity adult drinks.) The internet, and sites/pages like this provide the closest thing to that island (sans the recreational activities). We learn, share, laugh and cry together.
In summary, you’re not alone... most of us here have been there... and that’s why we’re here right now... to listen, to support, and to help you walk this walk. I thank God everyday for our "community,” and the ability to share my special little kiddo, and to follow others like her!
aka: Cora Jane’s Dad
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All photos courtesy of FrameWorthy Photograghy
JourneyFEST @ 2013