I received this from J., who agreed to allow me to reprint part of her letter, here:
From time to time when people tell me what they think it must be like to raise a little guy like (my son), I tell them very honestly that 99% of the time, it is an amazing gift to be able to be his mommy. He is so much fun and full of life! He has huge smiles and shares them with everyone. He has taken us an incredible journey that we never even planned and has totally given me a new and beautiful way to see life.
Then, there is that last 1% – the feelings that I keep buried and hold secret, sometimes even from myself. That 1% is like the sun. It hurts too much to look too closely at it, and I know that if I look at it too long, it could blind me in the amazing way that I now view life.
But that mere 1% is also surprisingly powerful, and still lies just below the surface – even after 6 years now. If I try to ignore it or deny that it there, it will spill over when I least expect it, so I have to respect it as well.
That 1% is the overwhelming grief at the reality that can’t be changed – the fact that my little boy is still damaged and always will be. It is the grief that comes with the specialists who take off the gloves and “tell it as they see it” with brutal honesty. It is the tears that totally catch me off guard when they suddenly fall for no particular reason at some random song, and the rare wish that I could wake up and find that this was all just a dream and my little boy has no more disabilities.
The 1% is the guilt that is buried deep … although I know beyond a doubt intellectually that it isn’t true, there is still that overwhelming emotional response of Guilt that tells me that somehow this is my fault. The 1% is the anger that rages very rarely but with enormous power at the parents who say cruel things without even knowing it … or at the adults who do nothing as their kids tease or ignore my son. The 1% is the cynicism that cries out below the surface at the people who tell me with big smiles that he is “doing great!” … And, more than really anything else, that 1% is fear.
Fear for my son’s future and wondering what kind of a life he will have without the ability to support himself. Fear that he will someday realize that something is wrong with him. Fear about the possibility that his failure to understand danger and “sensory seeking” behavior (i.e. intentionally falling down stairs) can cause serious injury or death. And, of course, his seizures.
This book [Road Map to Holland] is the voice of the 1%. … [Jennifer’s] narrative of hearing the news of her son’s Down syndrome reminds me of my reaction when I got that phone call telling me that my son’s EEG revealed “pronounced epileptic activity,” followed by my reaction of “what does that mean?”
I clearly remember the moment the call came in: the food cooking on the stove, the kids yelling in the background, watching the clock so I could get the girls to their performance on time. Then, I answered the phone. It seemed as thought time just stopped and the energy of that moment and of life as we knew it seemed to fall silent as the news was delivered … I remember wanting to run away from it, but knowing that I had to face it instead. And I remember that, despite the real weakness I felt at that moment in my knees, I couldn’t give into that feeling of wanting to crumble, because the kids were still right there, dinner was still cooking and we still had places to go, things to do and a life to live.
Nonetheless, his seizures still bring guilt and fear, even today. I keep that 1% in control when events from everyday life hit close to home. Last year, a little boy from (my son’s) same classroom at his school died in the middle of the night from a seizure. People still talk about it regularly. (My son) was often compared to him, and though I never met his mom, I am told by several that she is a lot like me; friendly, positive and very upbeat. When it hits that close to home, I can’t help but think, “What if it happens to us next?”
But luckily, that 99% that I described earlier quickly takes over, and I realize that (my son) was our surprise gift from God, unplanned but given to us nonetheless – that this journey, and every day we spend with my son, is His awesome gift to us. Life is much more vivid and vibrant because of this amazing ride that we have been invited to take – and I realize that the 1% only serves to make life that much more rich. I feel honored and very, very blessed to have been given this special little boy.