Journaling Your Way to Parenting Perspective – How writing it all down can add hindsight to your foresight

Regina Aguirre first began attending Parents Empowering Parents (PEP) programs when her son was eighteen months old. She and her husband had been struggling to manage their son’s Factor VIII hemophilia deficiency. What a difference a few years make. Today her son is 19 years old, and doing well, with treatments that he easily folds into his routine.

“None of it was easy,” Regina said. “My son was diagnosed at birth, and it was extremely stressful. Having a child with a bleeding disorder was a brand new thing in our family. We were struggling with infusion treatments, and trying to get a small child to understand that even regular accidents that come from learning to walk could really hurt him. When we went to PEP, as part of the parenting programs, they told us to start writing things down, and journaling. It made a big difference.”

Regina said even during her busiest times, she took the time to write a few words about the challenges they had dealt with over the course of the day, and her feelings about them. The journal was just for her at the time, but now, she hopes her son will one day read them so he can understand just how far they’ve come together as a family.

The journals reflect their family at every stage, Regina said, from the crazy early days as they struggled to administer treatment right, to those awkward years when she fought with her son as he “just wanted to be like everyone else,” to the days when she found out her second child was a carrier for bleeding disorders.

“When I look back on those journals now I shake my head,” Regina said, “If I only knew then what I know now, how different things might have been. But that’s the beauty of it. It’s healthy. Reading through them shows how much you’ve grown as a parent. Nothing about having hemophilia in the family is easy. Those first few years, we were really frazzled. It was intense. When you read back through your journals, though, it shows you just how strong you were, and how you worked your way through the challenges. It gives you strength to draw on,” she added.

In addition to the journaling, Regina said she drew tremendous strength from being active in the PEP community, and talking to other parents who have “been there, done that.”  And she’s not alone. In a recent survey of PEP parents, 100 percent said they would enthusiastically recommend the program to other families facing bleeding disorders.

The perspective she gained, Regina said, was invaluable.

“When you look back over your experiences, all laid out for you in your own hand, you realize that time flies so fast. Life is beautiful. Your kids are beautiful. I learned not to let the stress of dealing with the hemophilia destroy that. It’s helped me be more in the moment with my family, and that’s made all the difference.”

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