My husband likes tattoos. Really likes them. I do not have one spot of ink on my body. An indecisive person like myself is not a good candidate for tattoos. It’s a struggle for me to decide on where to eat out, so choosing an everlasting piece of art to adorn my body is not a good idea. My husband loves the process of creating the designs with the help of his talented “tattoo guy,” as I call him. My husband takes bits from his daily life—lessons, reminders, badges of hard won physical and emotional battles, and likes to have them as permanent art on his body. He’s thoughtful about what he wants to say and I love the ink masterpieces that unfold. It’s hard to choose my favorite design, but one that resonates is “The Three P’s.” Peace. Patience. Perspective.
After the kids got diagnosed in 2009 and we got into a treatment and appointment routine, we found that these three emotions seemed to rise to the top as everything else settled around us. We had a new sense of peace, as we had answers and felt we could grasp onto our new world. We felt that we had been awarded this incredible gift of patience. And above all, we knew that our new perspective would carry us with grace through this life.
Through our creatine deficiency social media groups, I’ve seen that one of the most common reactions when a family receives a diagnosis is relief. They’ve been searching and searching for the reason why their son is having seizures or why their daughter can’t talk. A diagnosis is an unusual thing — no one ever really wants one until they need one to explain why things aren’t going the right way. And there’s an incredible sense of peace when a family finally stumbles upon the reason. There’s peace in being able to take a deep breath and say, “Ok, now we can at least move forward.” My husband and I always want to remember that peaceful place in our lives. That is not to say our lives are peaceful. Among the daily chaos that happens in every family, we try to find quiet moments to sink back into that peace that, once, we never had.
We learned patience early on in Benny’s life. That kid is the hardest worker I know. He will try and try and try, and sometimes still not get it. As a baby, it took him longer to sit, crawl, walk, all that. And some things we still patiently wait on. I’ve learned patience as I watch him try to take the lid off his yogurt, or put his pajama pants on. When you are truly patient, the reward is one thousand times more gratifying. Just within the past year, my 13-year-old has learned how to cover himself with his blanket. He’s learned how to feed the dog. He’s learned how to dribble a basketball. Seeing your young child miss major milestones breaks your heart, but the victory is so much sweeter if you are patient, no matter how late it comes.
The last P is perspective. Sometimes bumps in the road allow you to see past your own problems. We’ve reflected a lot on how much harder life could have been and how thankful we are for what we have. I try to walk through life with more gratitude and compassion.
Perspective also means looking at life differently. There are many paths for many children. Some children go to college to become doctors, some go to school to learn a trade. Some get married and some go on to have children. But not all kids do that. When you first have kids, these are the images in your head, these clips of happy moments and milestones. But what my life has taught me is that there are different views, or different perspectives, of a happy life. We learned to look at success and happiness from a different angle. My son might not go to college, he might not get married or have children, but that doesn’t mean his life is less happy. People who know Benny can attest to just how incredibly happy he is all the time. We have learned that watching a Special Olympics basketball game is just as exciting, if not more, as watching a “normal” game with “normal” kids. We have broadened our views to see all the options available, and not just for him, but for our daughters and ourselves as well.
We have learned to look all around us for different perspectives on what makes a life. And they are all valid and beautiful. These tattoos serve as more than just decoration. They have become our credos and reminders of how far we’ve come and what we’ve learned.