If Not Just For a Little While....

Happy Father's Day! We asked Rett Dads to be our guest bloggers for this past week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

We have laughed and cried at the words you all have been able to put down on paper. You are all amazing fathers, advocates, and fighters. You embody the love and hope and joy within your girls, and inspire others to do the same.

Thank you.

READ POSTS BY THESE GREAT DADS!
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"
Roger Brooks, Juliana's dad: All Our Girls Are Special  
Justin Johnson, Nora's dad: Just a Girl

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TODAY'S POST: Blog #8: Manny Gutierrez, Anna's dad

 

The other day, I was on a walk with my son, Gabriel, when I received a phone call from a colleague of mine. Suddenly, I noticed Gabe was almost half a block ahead of me. When he arrived to the street corner, he looked both ways and crossed the street. He is six years old, and we have never let him cross the street by himself. I ran up to him and asked, “Gabe, why are you walking ahead of me?” He looked up and said, “Because I want to look like an eighth grader, Dad.”

I remember when I was a kid and wanting to walk ahead of my parents by a few paces, as if I were walking by myself. However, that wasn’t until sixth grade at the earliest. Here was this little muppet of a man, my first grader, trying to walk tall in his tiny shoes.

I am not ready for this moment in parenting

“Gabe,” I begin to say, “I think you are a very smart and good young boy. I believe that if I told you to walk from our house to your class, by yourself, that you could. I believe that once you were done, you would know how to get home, by yourself. But I am walking with you, not just because I want to know that you are safe, but because I want to be with you. And when you grow up to be a big eighth grader, guess what? I’m still going to want to walk with you. And when you are in college, I am still going to want to walk with you. So Gabe, can you do me a favor?”

Looking contemplatively away from me, he asked, “Yes, Dad?”

“Can you just walk with me right now, just for a little while?’

He looked up at me, thought about it for a second, and said, “Sure.”

My daughter Anna is three years old. She has Rett Syndrome. Despite the obvious hardships that come with that severity of a diagnosis for her and for our family, I am truly honored to be my children’s father.

However, like most parents, I get busy with so many other things in life that seem so important in our day-to-day. I find myself growing more concerned about where our money is going each month then how my kid’s days went. I become more worried about different projects I am working on then trying to do something with my family. And yet, with my constant distractions of “responsibilities,” I turn to my daughter, pick her up, and she looks deeply into me, with nothing but thanks and happiness that I took the time to be
with her.

When I held her today, I was reflecting on my talk with Gabe, and how all of a sudden the roles were reversed. She looked at me as if to say, “Can you just be with me right now, if just for a little while?”

I knew from a young age I wanted to have children. I looked forward to the days that I could spend time with a family of my own. Being the good dad. The one who would teach my son to play ball, to jump into the day-to-day and be the good father I was always meant to be.

Then Rett Syndrome happened.

Suddenly you are not allowed to just mail it in for a day anymore. You can’t come home and just take the time to yourself to get ready for the next leg of it. You are either in or you are out in this Rett world that we live in.

It’s not enough to be good. You have to be great.

Because when your daughter looks up at you with those eyes, you have to be prepared to meet that gaze with integrity.

Knowing that you were there that day… To carry her when know one else could, because you are the one with the strongest shoulders. To fill-in the blanks, because as amazing as their mothers are, they don’t have the answers to everything. To catch them when they lay tired from their struggles, because everyone at some time reaches a breaking point. And then they will turn to you for comfort.

It maybe a lonely path at times, but it is the one thrust upon us by circumstance, by fate, by God… Whatever way, we were chosen. And to that I call us a brotherhood, bound by a virtue that all men and women search for and spend their lives trying to attain: unconditional love.

I never knew I could love so much.

For one Father’s Day, I would wish that I would not have to be so much to her, but allow her to just be so much to me.

And that some day, I can say to her, “Can you do me a favor? Can you just walk with me? If not just for a little while?”

-Manny Gutierrez