Perspectives of The Pompe World

Two things can be true at the same time, even if they are conflicting. I’ve known this to be a reality at times, but getting this diagnosis for my child has been a constant balancing act between several equally-weighted truths.

I am grateful for getting answers and getting them in a timely format. And I dread the anticipation this awareness brings.

I am relieved at how well my child is doing. And I mourn the deficits that are, or will be a reality.

I am gracious that life looks so much better than I feared. And I am mourning the life I hoped it’d be.

I am overjoyed at having access to knowledgeable healthcare providers and therapies. And I am annoyed by the amount of appointments and therapies this diagnosis will require in a lifetime.

I am hopeful for my child’s future. And I fear the progressive aspect of this disease.

I am motivated to make an impact in this community. And I get overwhelmed by the pressure I put on myself.

I want to focus on the “bright side.” And I want to ensure the harder realities are not dismissed or invalidated.

I feel lucky for the milder clinical representation of my child. And I have survivor’s guilt when I see more severely affected children.

I feel inclusion through this population of diagnosed people and families. And I feel isolated by being a part of it.

I am proud of my child for how they push through the obstacles. And I feel sad that they have to.

I am grateful and angry. I am hopeful and afraid. I am many things at once and some days I find it hard to balance which sides I want to give emotional energy to. Sometimes, anger wins, other times, hope does—But all of these concepts exist in tandem and that is a hard thing to work through.

The anniversary of my daughter’s diagnosis is tomorrow and each year I remember that time and feel melancholy. I ache for the way my heart broke with confusion, devastation, and grief. I mourn the newborn stage that should have been joyous, but instead felt like my world was sinking slowly. Four years later, and I’m so vehemently grateful for what life with this diagnosis looks like today. I’m learning (with the help of therapy) that I don’t have to be settled into one reaction or feeling, but instead should find a peace for all of these things to exist alongside each other. I hope that we all can give ourselves some grace by identifying that it’s not always this OR that, but instead this AND that.