Mom, Parenting, Parenting Advice, Special needs parenting

Why Special Needs Moms Should Stop Feeling Guilty

Mom guilt runs high in my life. I feel guilty about allowing my child screen time, I feel guilty for allowing him to eat foods with sugar, and I feel guilty that I buy him toys when I know he doesn’t need them. These are superficial guilty feelings I have because I know that I have no reason to feel guilty. I am his parent, and I get to make choices for his life. Sometimes that means I give him a little extra sugar, let him watch a few extra cartoons, or buy him a toy.  I shouldn’t feel guilty for these choices, but sometimes I do.

Then there is a different type of guilt I feel almost daily about my child. The guilt is the seething, dirty monster that lives in my mind on the darkest days. There are days it terrorizes my every move, and I feel like I need to lock myself in a room and turn off the lights. When I lay my head down to sleep at night, it chatters in my brain and spins webs of lies. I toss and turn, and I try to shut it off, but the guilt haunts me to my core. In the mornings, I feel it weigh heavy on my heart as I prepare for my day. I know that I will be confronted with it many times during my day, and I feel as though I need to dress in a coat of armor to protect myself from the jabs it will take to my heart. Logically, I know there is no reason to carry this guilt, fight this guilt, or be haunted by this guilt, but I can’t turn off that nagging feeling in my gut.

It screams at me:

You caused this disease!

You created these disorders!

It was what you ate, drank, medications you took and your faulty DNA that made your child broken!

You should have done more, eaten less, and been more careful!

Why didn’t you just listen to everyone when you were pregnant!

My child was born premature, and I started blaming myself from the moment he entered the world. My body failed him. He needed more time inside to grow, for his brain to develop, and for his lungs to mature. My body quit and gave in. He came five weeks early, and his lungs and heart came with problems. His lungs showed signs of premature lung disease, and his heart had two small holes along with pulmonary hypertension. As illogical as it sounds, I convinced myself it was his prematurity that created the issues. Even though in my mind I knew that his heart would have had problems premature or full term. It didn’t matter; guilt runs strong. As mothers, we feel like everything should be within our control. We are the nurturers, the fixers, and the ones that are typically the primary caretakers. As moms, most of us feel like it’s our job to be able to make everything ok for our children.

I couldn’t make his heart or lungs function properly. I couldn’t fix it. So I felt guilty.

As he grew more and more diagnosis were added to our list. Medical terms that I had never heard became standard in my life. Panhypopituitarism, Chiari Malformation, Macrocephaly, Asthma, Mitral Valve Stenosis, Adrenal Insufficiency, Avoidant/Restrictive Feeding disorder, Oral Apraxia, Hypotonia, Oral Dysphagia, Sensory Processing Disorder, Global Dyspraxia and finally Autism.

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The guilt grew with every single diagnosis. It certainly didn’t help that people I knew asked questions like:

Did you take medications when you were pregnant?

Did you vaccinate him or did you receive vaccinations while pregnant?

Did you eat Lunchmeat, sushi, unpasteurized cheese, foods with too much sugar or GMOs when pregnant?

Did you drink when pregnant?

Did you smoke when pregnant?

Do you live in an area that sprays pesticides?

With every question I received from well-meaning friends, family or strangers the guilt grew stronger and stronger. I felt like it had to be my fault.

Why would they ask me these questions if they didn’t think I was responsible?

Do they think I created his problems?

Since they are asking they must think I’m to blame, right?

Over time it became impossible to manage the feelings of grief, guilt, and frustration that I was the cause of my child’s medical and developmental issues. I found myself crying, screaming, and yelling at everyone about everything. If everyone else is asking me about what I did, I had to have DONE something. There was no other way to make sense of all the questions, articles and content people shared with me about all the reasons children become autistic or had medical complexities. Nearly everything shared with me was all pointing back to what I MUST have done wrong.

I lived in that dirty, disgusting guilt for far too long. Years passed by and my son grew, but the guilt in my heart never once changed. My personality changed, my heart became hard, and bitterness started to harden my spirit. Every inch of me felt responsible for his issues because everything in the world was pointing fingers at me. I had to break free from the guilt that was consuming my life.

Then it occurred to me that so many other mothers in the medically fragile community or even special needs community have also felt tremendous guilt and responsibility for our children’s disabilities. Society and the media are great at trying to point the finger, place blame, and find the REASON why things happen. However, sometimes there are no answers. Sometimes there are no identifiable reasons, and sometimes the questions we ask others are just not helpful.

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At some point, we need to all throw up our hands and realize that it’s no one’s fault our children have disabilities or diseases. No articles that are shared with us, documentaries that are made, books that are written, or research studies that have been published will explain what happened to our children.

Instead of feeling guilty, and eating up at our hearts and our well-being. We need to find acceptance and know that we did everything the best we could with what we knew at the time. Acceptance will be the key to our freedom in parenting our children with confidence, love and fierce protection from the cruel world. We need to ask our friends and families to join our acceptance and love our children for who they are and what they bring to this world. We need to harvest or energy in a direction that is positive. We need to stop feeling guilty.

The truth is – it’s not our fault.

 

 

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