It might have been a slow creeping feeling perhaps. Maybe the early signs and symptoms were not obvious. Maybe it was slower development or a slight variance in a personality trait. You probably had that GUT feeling, but you waited. You waited to see if they would grow out of it, or it would change. Or maybe it was just a staring-you-right-in-the-face-can’t-miss-it physical symptom. It was that first moment you realized something was different about your child.

My stomach was in knots when I realized there was something wrong with Parker. I knew there was something wrong with his immune system – an autoinflammatory disease (it turned out). My mind swirled. One of my worst fears before having a child was that they would develop a condition like myself (lupus). No parent imagines an ailing child who might suffer. But, that’s a very unrealistic expectation to expect no illness.

It took us 10 months to get a confirmed diagnosis. He has an autoinflammatory disorder –  PFAPA (periodic fever, aphthous stomatitis, pharyngitis, adenitis) a periodic fever syndrome.

All I felt was GUILT. A TON OF GUILT. My heart broke because he was suffering every month. In my mind, at that time, I thought it was my fault. I was the one who passed these genes to my child – I have lupus. He was living a tough life from the start because of me. He was undergoing testing he shouldn’t have to as an infant. He was having fevers up to 105. He had pain and suffering. All because I was his mother. 

Of course, it is unrealistic to believe this. And of course, every child has two sets of genes. They don’t all come from one parent. However, when you see your child with the same symptoms you have, it’s overwhelming. It’s hard enough to handle your own symptoms at times. Now you need to teach this tiny human to learn to deal with them as well. Turns out – it’s not genetically the same and it just happened he developed a similar immune response condition to myself. The genes are different and autoinflammatory is slightly different than autoimmunity.

Maybe you don’t have a disorder or you have a different one. Maybe you just feel like it was something “you did.” Maybe you think and wonder about every little thing you did while pregnant. Maybe you wonder about an incomplete family history. Did someone else have this and we just didn’t know? What could have been different?

What Can We Do To Get Ourselves Out of the Guilty Rut?

1. It doesn’t matter what happened BEFORE!
We need to remember our past is our past. That includes our medical history. We took a gamble with genetics. It’s what everyone does actually. We just didn’t get the toss of the dice we thought. But that doesn’t mean it’s bad.

We do the best we can when we grow our babies in utero. We try hard, and even if you didn’t, our bodies are strong and protect those little ones in there. They are built to handle stress and physical strain. If our bodies weren’t nobody would reproduce. Things like genetics are beyond our control. We have to let them go.

2. Focus on the good.
Our children are BRAVE, TOUGH, and STRONG! They have come with some amazing uphill climbs haven’t they? They were born with something most adults can’t imagine. Even if we can imagine, look at how well your child lives their life despite how they came packaged? It’s truly beautiful. They are unique and are learning to live life fully. We need to focus on all the beautiful moments so we can make it through the tough ones. Your child’s disorder is only that – a disorder. It’s not THEM! They are beautiful little people with all kinds of characteristics! Whatever the disorder, it’s just a part of their life, not the whole thing!

3. Teach ourselves, and our children, to thrive and educate
There is nothing more empowering than sharing information with others about your child’s condition. It helps your child learn about their own condition, and teaches them to self-care. It shows them to take charge of their situation and educate others to make the world a better place. More skills help them become stronger people. They can grow to make the world a better place through sharing and being their own unique person.

It’s refreshing to let go of guilt. No matter what, your child is here now and living life now. You are all making the best of it. You are strong. Guilt is a feeling associated with the past. Let’s leave that where it belongs – in the past.

Share how you felt. What helps you and your family through the tough times?