How do you tell your kids you forgot how to walk when they were just learning this essential skill? How do you tell your children making jokes about hollering for them to come here when they are standing quietly on your left is not done to make everyone laugh but to lessen an uncomfortable reality of you not being able to see them standing there? How do you tell your kids you cannot “watch this neat new trick” sometimes because it gets too confusing when there are too many kids on the playground equipment at a busy park? How do you tell them all of this? You don’t need to. They already know.
I fretted at first of how to explain to my children mommy had some inescapable weaknesses. It was not that I did not want to run and play tag with all the kids and fun mommies. It was just that I couldn’t. I did not want to confuse or concern my daughters. I did not want anyone, especially them, to have to help me adapt and carry the burden a stroke had left behind. Yet, I wanted them to be aware that I did not stand on the sidelines because I was bored. From there, I could see their eyes shine so bright it nearly caused my heart to burst with happiness as they played their games. It was important they knew I no longer had the physical ability to join in their fast paced games, but I was still passionate about watching them run and play.
A friend recommended I find the book One Foot, Now the Other by Tomie dePaola. It is a book about a grandpa that had a stroke. The young grandchildren help him learn to walk again. I attempted to read it to my daughters. At their ages, they found little interest or parallel to their life with this story. My children rarely asked questions. I began to understand this “need” to give them an explanation of a mom on the sidelines was my need and by no means theirs. I backed away from this hunger of trying to inform them about the hows and why of my physical limitations.
They understood though. They told others their mom limps because she had a stoke (not a typo just a word they used in the first few years of comprehending my condition). I did not correct them. I answered the few questions they have had in passing conversations. Then there was the memorable moment when I truly comprehended how much more children understand than we give them credit for. I was invited by Nine News Australia to bring my daughters with me for an interview regarding prosopagnosia. Initially, I was very hesitant. Never before had I explained to these beautiful children that I had never, nor would ever, be able to remember what they looked like. I finally decided it was an appropriate time to tell them. This interview was important for my children, for us as a family and for others with face blindness. It offered us an opportunity to educate many people.
We sat down and had the conversation in their rooms. Separately, I explained their mommy could not recognize them. “Yeah,” they each individually said with obvious unconcern, “that is how you have always been.” You see, this is the mommy they knew. I am flawed. Every person is. No one is perfect, but these two have known no other mother. They do not know what it is like to have a mom without prosopagnosia who knows their faces. I may not recognize them; nonetheless, I am the mom that loves them deeply and always cares about and for them. It seems natural to them that hemianopia causes me to not see them when they are standing next to me on my left. Most important to me, they really do not care about these flaws.
This is what they care about; this is what they know. I do the best job I can each and every day. This effort and unconditional love is what matters to them. The rest of this stuff, the things I feel a need to explain to them, this is just for the purpose of removing a burden from me. In no way does this aid my children. Besides, they are growing up rather quickly. I do not need to tell them much anymore. These smart little girls are quickly evolving into the stage where they believe they know everything anyway! 🙂