I am the parent of a child with disabilities, but I feel I sometimes struggle around other parents with children who have disabilities. Many parents of children with disabilities do not “get me.” Actually, I think most really do but are unwilling to admit it.
I likely struggle for different reasons than you, and yet I am willing to bet our reasons blur together in many ways.
I will never forget when I was typing a response years ago the Yuku grief support forums and had this “light bulb moment” in regards to the differences between “us and them.” But for me—I am in many ways the “us and them” all in one, so it was the differences within myself that made it such an “aha” moment. I felt I was standing on some imaginary line with one foot in two very different worlds. I felt parents who terminated focused on the bad to get through, and parents who had a living child with a disability or fatal illness focused on the good to get through. I realized this because it was exactly what I was doing. It was exactly what I was seeing everyone around me do. To sum it up, we were all doing what we needed to do to get by.
But of course it can’t be that simple.
My very next realization was exactly what I think many parents of children with disabilities have a huge issue with separating: The ability to simultaneously love and advocate for their children while admitting realistically that this is no life for the child, parents or extended family. A perfect example would be when I received an award in my state last year for being a parent advocate for people with disabilities.
I attended and couldn’t help but wonder how many people in this room are anti-abortion and assume the same about me?
I wondered when I walked to the podium and everyone clapped, what would they think if they knew I had terminated three pregnancies?
I wondered what they all would think if they knew how I had volunteered to travel and share my story against a pro-life bill the same week I was traveling (to the same city) to receive this award.
I wondered if any of them would or had terminated pregnancies like I did.
My most challenging encounter so far has been the harsh judgment and dispute with women who have cared for years for their children and buried their children with the same disorder as my own, and who disagree with my choices. I once had a mother tell me how my abortion was sending the message that her child’s life had no value, which in turn meant I felt my living child’s life had no value. It only took me about a half of a second to tell her what total and utter bullshit her theory was. I do my best to never judge, and I support everyone’s right to choose. However, I also know how I will never, ever be able to comprehend how someone can willingly choose to bring a life into this world when you know that life will suffer.
It should not be about how much you love your living child with a disability in comparison to a child you know will enter the world and only suffer. It’s about each child. It’s about the individual love you have for each child. Ending a pregnancy does not mean I do not love my living child and it in no way does it mean I don’t love my babies I let go either. Any argument against that is complete nonsense spoken by an ignorant person.
If the above isn’t sufficient, here is a very, very minute reality check… I recorded five seizures this morning and have been physically attacked a dozen times in the past week. Today, I will call my friend whose son died two years ago from the same disorder as my son. We became good friends after I “outed” myself about my abortions on the support group for our children’s disorder. When she called me two years ago to tell me her son had passed, I told her how sorry I was and then gave an additional apology for all the jerks who would offer empty platitudes and say things that were meant to be helpful but would be the total opposite.
One of these days I hope more people can begin living more honestly and openly about these very important topics. I have been essentially caring for a baby for fifteen years. My friend did the same for three years & then watched her son very, very slowly die over the next two years. She was the best mother and I adore her for being one of the rare ones who would not hesitate to tell you to terminate to avoid the hell her son endured, she endured, and her family endured.