My normal

My Normal

I once lived a different normal. I lived without any clue of what families of children with special needs battle on a day-to-day basis. I was once ignorant to the millions “yes, I said millions” of different genetic anomalies or mutations that can happen to a developing fetus. I’ve done my homework and I can tell you it’s frightening how many babies are affected by genetic disorders, diseases or developmental delays. I believe all the chemicals in our foods and environmentally have alot to do with this surge in so many complications with our children today, but that’s just my opinion.

I can remember seeing a family that had a child with special needs and feeling sorry for them, “those poor people” I used to say to myself and instead of speaking up and talking to them I would quickly turn away for fear of saying the wrong thing. My heart used to sink each time I saw a child with special needs and I felt a sense of loss for the family. I used to think their life was full of sadness, that there normal was destroyed by the nightmare of their reality. As I look back now I feel so stupid for making assumptions when I had no clue what their life was really like. But, now I do know.

Now that I am a parent of a child with special needs I am more aware than I ever thought possible.  I don’t want people to feel sorry for me but I can see that some do and it bothers me. I hope I never made anyone feel as uncomfortable as some have made me feel. I hate the stares more than anything, I wish people would just ask me if they are curious but don’t stare.  What are people so afraid of? Maybe some of them are afraid to speak up and say the wrong thing as I once was and I understand that but there are also those people who stare maliciously. Those people who stare at you and your child as if disgusted to be in your presence as if they are somehow better than you. It’s truly sickening at the ignorance in the world today.

I still live a normal life it’s just not your normal it’s “my normal”. My normal includes an array of doctors and therapists, special dietary products, IEP’s, special toys and equipment. My normal is just as normal as any one else’s. We have family nights, hang out with friends, go to the movies, play games with the kids and even manage to fit in a date night every few months. My family experiences highs and lows as all families do. My normal may leave me with little free time but that’s part of being a parent anyway. My normal includes a toddler who is not yet able to be independent and may never be fully independent but for me it’s not abnormal.

Normal: conforming to the standard or the common type; usual; not abnormal;regular; natural.

You see we are all different, no two individuals or families are alike so what may be normal for one may not be for the other.  So how could my child born exactly the way she is, naturally, be abnormal? It does not make sense. I refuse to say my life is not normal because this is the natural state in which my family lives. Just because my normal is not the same as your does not mean it’s anything other than normal.


3 thoughts on “My normal

  1. annmariegubenko

    I can relate to this on many levels. My normal is so very different than every single person I come in contact with in real life. I’m sure once they know about the boys, they wonder how we “do it” or they feel sad for what they know about the disease without knowing our boys very well. I still have days where I struggle with our normal but I love what you wrote in your last paragraph. I’m going to remember that. 🙂


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