On a regular basis, I hear comments along the lines of "I don't know how you do it" or "I couldn't do what you do". Comments that all special needs parents hear a thousand times. Phrases that I was guilty of saying before I had my sweet Carter. I was also a person who always said, "I just want a healthy baby and that's all I care about". Oh the ignorance and naivety of those words. Of course every parent wants a healthy baby. Of course every human wants life to go in the order that it's naturally intended. But in the real world, life doesn't always work out like that. As a parent to a child who is not just chronically ill, but is ALWAYS ill, I live the life that millions think they never will or hope they won't. You never hear people say, "I will still be happy if my child is born with something that may not be considered perfect" or "I will be okay even if my child has medical problems". I think people worry that if they say those things out loud, that they will "jinx" themselves with an unhealthy child or that they will be judged for every considering the idea of not birthing a healthy baby. In the world we live in, everyone strives to have perfect things, perfect jobs, perfect spouses, and the perfect children. As if their entire lives will be summed up by those things. It's really such a sad world that we live in because this is the mentality that the majority of people live in. Even if my life hasn't turned out the way I ever expected or planned for, it is perfect to me. I am not special or stronger than others. I am not a supernatural human who can handle anything that life throws at me. 4 years ago, if you asked me about Carter and the things that make him "different", I would have broke into tears and been deeply offended. If someone asked me if he was meeting milestones, I would have lied and said he wasn't feeling well so not up to par. I remember walking through the grocery store and having complete strangers approach me to say "your baby looks SO tired, poor baby". I was a mommy who seen nothing but perfection in my tiny baby. I didn't understand what others seen. Of course, I KNEW that something wasn't quite right but I grasped on to the idea that he was just delayed and would catch up on his own time. I was immune to the constant spit up and wobbly muscle movements. Throughout most of my pregnancy with Carter, I was part of an online mom group. After our babies were born, we had several meet-up's where we were all in one place with our babies who are all within a month of each other in age. Those were the times that I felt reality crash down around me as the gap in milestones was unavoidable. I wanted to scoop my baby up and run away. I wanted to keep Carter in a bubble away from the harsh world. I didn't want him judged or scored on a chart of "normal" development. I wanted to go about my life only seeing Carter as what he was; perfect. For the first 2 years of Carter's life, I would post hundreds of pictures of him doing "typical" things. I was great at covering up my fears or Carter's struggles. I posted pictures of him standing, playing, sitting, and smiling. I wasn't ready for the world to diagnose my baby.
Getting to the place I am in now where I am okay talking about Carter's medical problems and our journey did not happen over night. It wasn't something I was ready to do 4 years ago. The biggest struggle I had through Carter's life, was letting go of all the things I had hoped for him. I had to forget all the ideas I had for his life. When I finally learned to let go, I could finally learn to embrace and love what he IS.
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