As you read Kimberly and Steven’s story, please keep in mind that some of the decisions caregivers will make as they take care of their loved one are personal, and that there are not always right or wrong decisions.
The long road of parenthood is filled with choices, and parents of children with Hunter syndrome may face hard ones from time to time. For Steven and Kimberly, a big dilemma arose in the early school years of their son Justin.
We came to a crossroads. We spoke with an educational consultant and he said, ‘You’re at a point where you need to make a decision about whether you’re going to continue along the academic path and really push those skills, or you’re going to go down the social and communication path.’
“That was a really hard thing to hear, because we obviously want all of it. But we listened, and we made a conscious choice at that point to continue with his academics, but not make that the focus.
“It was a huge, life-changing moment for us. Of course, every family has to make their own decisions. But for us, it was the best decision we ever made. He has a life-threatening condition, and honestly, we didn’t know how long Justin was going to be with us. We have no guarantees. So we try to make life special every day."
And so Kimberly and Steven decided to invest their time in creating opportunities that would help Justin belong in the community. They kept him in a mainstream school so he could stay with the peers he’d known since elementary school. They placed him in extracurriculars so he could be among kids without Hunter syndrome and be able to connect with them. And they put in the work and planning to create seasonal parties so Justin could play with his peers and embrace his community.
Tagged in: Hard choices, Parenthood, Caregiver
