Discussion Forums
Wed, 05/12/2010 - 20:20
When my family was down in Memphis to meet up with a number of the Exceptional Family crew, we had a Dad's discussion on how we deal with our kids' diagnoses and how we get by day by day.
I know there are Dad's out there that simply cannot deal with it.
I know there are Dad's out there that deal with it in ways I wish I could match.
The toughest part for me is seeing a vision of everything I would like to be able to do for my little girl, only knowing I can't make that happen right away because of things like: insurance coverage for Katy's medical bills and a salary so we can pay for Katy's therapies (along with everything else my family needs to survive). But I'm working on it.
It's a second job, to be sure, advocating for my child. I'm continually trying to find the time to develop Katy's website to help tell our story and possibly help another family down the line that ends up with the same diagnosis as Katy. I have Google Alerts set for all sorts of combinations of words that just might bring me more information on my little girl's condition. And I find myself spending hours researching therapies, assistive devices and other options for us. But, and let's be honest here, nobody else is going to do it for me.
I am my daughter's best hope.
And when it comes down to it, that's pretty much the same for most Dads out there right now, anyway.
Dad. Within the special needs community, that word itself can spark so many different conotations. Is it "dad" who left the family because he couldn't deal? Is it "dad" who is aloof to the situation and takes a backseat to his exceptional child's life? Or is it "dad" who is engaged, involved, and dedicated to their exceptional child's life?
This latter "dad" is the one I definitely strive to meet, to connect with and encourage. Fathers are missing across this nation. We need men to stand up and fight for their families. What better way and what better cause when you have a child with special needs.
As men, as fathers, we are the best advocates, the best voices, the best "strong arm" to protect, to serve, and to speak up for our children. Most of us have always grown up as boys/men looking for a "fight". What better fight than that for the cause/benefit of our exceptional children!
6 1/2 years ago I became a Dad of a special Boy and Girl. They came to the world 3 months earlier than they were supposed to but if it was up to the docs they never would have been born at all. I was blessed with these gifts of life and catapulted into being a special Dad that immediately became a protector and advocate for our kids.
It was tough at first thinking everyone else had the answers. Family, Friends, Doctors, Therapist etc, but I learned quickly that this Daddy, had the ultimate capability to make the right decisions for my kids. Fortunately my daughter is perfectly healthy and also, fortunately my son survived but was diagnosed with Cerebral Palsy, and lung disease. My make up of being raised by a great dad helped me to accept these kiddos not only as a great challenge but as precious gifts, not to be thought of as a tragedy.
I agree with you Todd, that it's a second job to have a child with special needs. The amount of hours I've spent on researching therapies, remedies, and just educating myself is amazing. But it's gladly welcomed in my case because there wasn't an option to flee or disengage. He needs me.
He's changed me as a person. I have even more purpose in this life now. I became closer to my God. I decided to fight for my little guy and help him in anyway possible. I started running marathons for him. I started a Non-Profit for his benefit. I chose 3 different alternative methods of therapy for him. We've done fundraisers for him. I've invested thousands of dollars in his development and care. All things I would have not have done if his life didn't bless us.
So I continue to look at his life with his Daddy as a journey. The final desitination unknown but we have goals in mind along the way. Thankfully I didn't run. And thank God I he created a Dad who cares. I look at opportunities for my son to thrive rather than bury my head in the sand. I'm so glad my son and daughter lived for they created a Daddy who want's to Rock!
Thanks Kids!