“Mom! “ Nic’s cries could be heard throughout our home.
“What is it, Nicky?” I asked. It was 1:00AM. I could hear Emma whimpering.
Nic began to cry. He stood in the middle of the living room, pointing toward his bedroom. “She’s in there, she woke me again,” he said before bursting into tears.
“Oh, Nicky. Come on. I’ll get her out of your room,” I took his hand and led him back to his bed where Emma lay.
“Emma! This is not okay. You may not wake up Nic!”
“Nic’s room, bye-bye!” Emma said cheerfully. Then she began to whimper.
“That’s right. You may not wake up Nic. Go to your room,” I said.
“No. Not going to wake up Nic,” Emma said.
The night before Emma woke everyone by screaming in the middle of the night. It was similar to being woken by an air raid siren, jarring, disconcerting. The shrieks were deafening. We punished Emma by not allowing her to have her beloved pancakes the following morning. Even so, she seemed not to fully understand the connection.
Emma’s nocturnal awakenings affect all of us, but so do her public melt downs, her inability to communicate, her inability to understand and empathize with others, her limited food choices, her inflexibility.
Perhaps of all of us, it is hardest on Nic. He is the one who gets the brunt of our impatience. It is Nic who feels the weight of being expected to be the “normal” one, who understands and feels our stress, who feels fury with Emma for her very public displays, which he finds increasingly intolerable and embarrassing. He longs for a “regular” sister, one he can play “hide and seek” with, one who will play card games with him. One he can talk to. As exhausted as Richard and I are by our sleep- deprived nights, we do our best to plod along. We talk with one another, lean on each other. We rely on gallows humor when everything seems bleak. And while we encourage Nic to talk honestly about his emotions, I wonder whether he really feels he can. I wonder whether he doesn’t feel he is placing yet another burden on us, and censors his thoughts and feelings.
For several years after Emma’s diagnosis Nic went to see a child psychologist. A year ago he requested that he not go any longer. We spoke with him at length and promised him we would not force him to continue seeing her if he didn’t want to go back. Since then, I have asked him several times whether he’s sure he wouldn’t like to return or find a new therapist, he has continued to say no.
I have learned over the years, that as bad as things are or seem: a) they can always get worse, b) they can seem worse than they are and c) one can always shift ones perspective ever so slightly enabling one to see things differently. I have found when I am able to achieve a more balanced perspective I am better able to cope.
Emma has changed all of our lives dramatically. She has pushed each of us. Sometimes it feels to our breaking point, but we have all survived thus far. Emma forces me (I will not presume to speak for any of the other members of my family) to pay more attention. I appreciate small gestures, small acts of kindness more than I did before Emma’s diagnosis and it inspires me to do the same for others. For instance, I am constantly aware of how hard my husband, Richard works to help her, to help Nic, to help me. He is a rare breed, fiercely ambitious, a visionary and yet places his family firmly first, not just in thought, but in his actions. He believes in equality and behaves in accordance to those beliefs. He is as strong a man as I have ever met, giving both emotionally and physically of himself.
Emma has taught me to see the world differently.
And it is beautiful.
Emma's Hope Book 