To Parents Whose Child Was Just Diagnosed With Hurler Syndrome

When I meet or talk to a family whose child is newly diagnosed with Hurler syndrome or another rare disease, I am reminded of my first days and weeks after diagnosis. Years later, I can remember the turmoil of my thoughts, my feelings and my emotions.  I remember being up all night, crying most of the day, and playing all those what-if games in my head.

I know how hard those days are because I have been there.  and while I want to offer support and words of wisdom, I also don’t want to give false hope or promises.  I want to validate what they are feeling because sometimes it seems wrong to admit you feel things like “Why me?”  “Is it my fault?” “Is my baby going to die?”  “Can I handle this?” and “How is my life going to change because of this?”  Those are the thoughts and feelings that seem wrong to acknowledge because you think you are alone in those feelings. You’re not.

I want to tell new families that things will get better and offer them a ton of hope and shield them from the rough parts because they are already processing and struggling with so much. The reality of a rare disease is that things might not get better. There may be days that you feel as bad or even worse than you do now. Those days won’t last, but they will happen.

I want to say it gets easier. I can’t promise that, though. For some, the journey through rare disease is too short or too filled with pain and complication. I can tell them that some things and some days do seem better/easier, whether it’s because it gets easier or your coping skills and multitasking skills get better. It depends on the person and the journey.

I want to say the treatment and therapies will make everything better, and in some cases, it will make a lot of things better. But the reality of the treatment and the day-to-day of the therapies may be much harder than anyone expects, and some days getting through treatment may take all of what you think you have in you. At some point, the benefits of therapy might not make the drawbacks worth it, and that is OK too. You will know when to keep pushing and when to back off based on what works for your child and your family.

I want to say that it feels really scary right now, but the longer you have to process it the less scary it is. But in reality, some days or weeks or months might be as scary if not scarier than those first days. Sometimes the less you know, the more you can control your fear, and the more you know about the disease and the progression, the more you have to fear. You just can’t let those fears control you. You can acknowledge them, deal with them, and then put them aside so you can keep moving forward without letting them hold you back. Sometimes when you are so focused on the treatment and the immediacy of learning about your child’s disease, you can cope better than when the world opens up and you are no longer in that new bubble.

I do tell families that they will have days where they do not feel so overwhelmed or so lost. They will have moments of calm and moments of clarity. They will have moments of progress and joy. They will have moments of “normal,” although the definition of “normal” may change many times on the journey.

I do tell them that while it is hard not to compare or get jealous (these emotions still take me by surprise some days) of someone else’s journey and path, you can’t focus on another’s journey. What works for one child may not work for yours, and complications another child has may not be the complications your child faces. Even if we are all fighting the same disease, the path and journey vary enough that you can’t expect your path to follow someone else’s. We all have slightly different manuals for our journeys. Too bad no one will actually let us read our manual.

I can’t tell a newly diagnosed family what to do, how to feel or what choices to make.  I can give them some information if requested and I can tell them about our journey.  Most importantly, I can check in on them throughout their journey, be a listening ear, validate their feelings no matter how raw, and remind them that while their journey is an individual one, they are not alone.