Category: Uncategorized
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Baggage Claim: Diagnostic PTSD
Let’s talk about trauma. Mothers are holding their days-old infants down for procedures while they scream. Fathers are bracing their toddlers arms while needles draw the blood that will deliver the news. Pain, fear and discomfort for your child as you watch them cry—it will gut you. As parents, we understand necessity but that doesn’t…
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Onward As You Are
Life goes on. I wasn’t always sure it would but it does. Even with a tender heart, a sea of unknowns and a cloud of worry, life still goes on. Our other children need us. Our jobs, our partners and families need us. We have to get back to life after the bad news. Even…
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Attention.
Yes, we do this for the attention. Not for the attention it brings to myself, my family or even my daughter but for the attention it brings to this disease. I want people aware. I want people to hear this story and ask “was my child screened?” I want people who have experienced symptoms and…
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The Reality of Learning Late
For those who didn’t get screened as a newborn, the diagnostic journey looks much different. The initial identification of symptoms is usually brushed off. They chalk up these symptoms to things like not being athletic, growing pains, puberty fatigue, or even just normal aging. As these symptoms worsen and it becomes clear that this may…
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A Healthy Dose of Humbling
Having a healthy child is not all that matters. I saw that written somewhere and I think about it so much. I was the woman who prayed over my belly and thought “please just be healthy.”As if the worst thing that could happen to my child was to have medical complexities. Don’t get me wrong,…
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G is for Genetics and Guilt
As parents, we adore those things our kids get from us. When they get our blue eyes or full lips. Red hair or curls. Artistic or athletic talent. We love to see those little pieces of ourselves in them. I imagined the worst thing my kids would get from me is a smart mouth or…
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Heads Up for Hope; Why Newborns Need to be Screened.
Newborn screening gave my family a “heads up.” Even on the bad days when I feel like this is all so heavy, I am still always grateful for that heads up. Grateful in the deepest and most desperate way. Every child deserves that heads up, but not all get it. The more severe end of…
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Let’s Not Forget The Fathers
A lot of times on this journey, us mothers are the ones who are out loud about everything. We tell the story, connect with others, interact online and are usually the ones sharing things publicly. But let us not forget about the fathers. They experienced this too. They feel afraid and worry. They sulked with…
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Late Onset Limbo
I recall very vividly the moment they had confirmed that my daughter had Late Onset Pompe Disease. We had prayed incessantly for days that it was late instead of infantile onset. That diagnosis gave us time. (Or so we thought.) The spectrum aspect of this particular disease is a thief. In many cases, families received…
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Sorry, Not Sorry
I’m sorry. I’m sorry I am not always the mother who takes this in stride. I know that’s what people hope to see. I am aware that my weaker moments make others uncomfortable and bring the mood down. It’s heavy-I get that. But I don’t have the energy to avoid my reality in order to…
Perspectives of The Pompe World 