We were talking at supper last night, as we watched Aaron stuff pizza in his mouth, about how quickly Christmas zoomed by this year. It’s like a big meal that takes hours of planning and prep, and then is over in a few minutes. We had a great time having Sandra, Gary’s sister, here for her fifth year in a row. We love having her come…………we’re surprised that she keeps coming! Not really, but we laugh at all the mayhem that sometimes ensues at Christmas with the shopping and the cooking and the wrapping and the everything else. Plus this year we had Darcy, Andrea’s little dog, thrown in the mix along with our Great Dane, Jackson. And Aaron…….always our Aaron……with his many facets that either delight or depress or demand.
Aaron was still trying to figure out Christmas carols as our holiday preparations were gearing up and I had Christmas music playing all day long. Literal Aaron thinks that some of the words to our carols are quite ridiculous. We were playing Skip-Bo one night and I had Pandora cranked up to a favorite Christmas station when he heard The Christmas Song. When the phrase “……to kids from 1 to 92….” was sung, I heard Aaron go, “Hmpfff!!” And I prepared myself for either laughter or rolling of my eyes as I awaited his comment.
“People at 92 years old aren’t kids, right?!” I began to explain what that phrase meant when he continued with his commentary on this ridiculous song – “I think they’re warning people who are at the age of 92.” ” Warning of what?” I asked. But he really couldn’t explain what he thought and he certainly wasn’t getting my reasonable explanation, so finally he just admitted that he really didn’t get it, even as he repeated what he so often says about our weird world………..”That’s DUMB!”
He enjoyed “Ding Dong Merrily on High” more, though, because at least he thought it was rather funny. “That ding dong song sounds like an alarm clock!” he blurted as he laughed at yet another silly Christmas song. I laughed, too, as I looked once again at our mixed-up world through Aaron’s eyes.
Aaron’s Aunt Sandra makes beautiful scarves. She brought some for Andrea and I to have. Aaron saw them on my desk the next morning and walked down the hall, carrying the pile of scarves. “Mom! Did you build these for me?” he hopefully asked. I assured him that I did not build them, but that Aunt Sandra had made them for me. He was disappointed………such interesting, curly scarves would have been fun for him to own, he thought. “Are they like the Hawaiian women wear and then they dance?” he asked with even more hope. And again I assured him that they were not Hawaiian scarves and that I definitely would not be dancing a Hawaiian dance when I put on a curly scarf. He laughed at this funny thought.
Aaron did very well with going to his day group when Sandra first arrived. He often wants to stay home because she is here, but this year he was more controlled and willing to go. Having pizza one day with his friends at Paradigm was a great pay-off. He excitedly told me about it when he barged in the door that afternoon. “Mom! We had pizza!! First I had one piece and then I had four! They wouldn’t let me have a fifth.” I reminded him that no person, especially him, needs five pieces of pizza. And he is further convinced that our world is indeed without any understanding.
The next day we had a little snow and I knew that Aaron would not like this. He doesn’t want to get out in the snow, often acting like an old man who can’t bear the thought of the cold and the mess. Sure enough, I heard him knock on my bedroom door as I got ready and then heard his low, depressed, monotone voice as he said, “I do not want to leave this warm house.” He was very flat………very resigned……..very certain about this fact. I dressed and then went out in the hall, where I found his door closed. I opened his door and found Aaron in his bed, all covered in his warm blankets……….but smiling as I patted his shoulder. His smile showed me that he was finding this all to be funny and I was relieved that we were not going to have a small war over this issue of the messy, cold snow.
He did go to Paradigm that day, happily, and later in the week he ended the season there with a Christmas party. He came home very animated as he held up his Wal-Mart gift card and his stocking with his name on it………..and which he decided that he wanted to give to visiting Darcy, who didn’t have her own doggie stocking. He liked the food, too, especially noting some fascinating cookies – “Mom, we had cookies that had whiteness on them!”
Christmas Eve was, well, interesting. Aaron was very happy about the bustle and activity of the day. He came down from his room from time to time to talk, of course, or to play with Darcy or Jackson. He was very intrigued by Darcy’s dog toy. “Mom! Darcy’s dog toy has warts!” And he was also fascinated by the Polish sausage that I was putting in my spaghetti sauce. “Mom, are you putting that bent hot dog in the spaghetti?!”
Andrea was not home during the day, as she was visiting her friend James and his family on their farm near Salina. Aaron asked where she was and he did not like the fact that Andrea was not at home……….and he definitely did not like it when I told him that James would be joining us for supper and for the evening of games and fun. It was hard to tell why he reacted so strongly, but I believe he feels an ownership of Andrea. He sees her as a mother figure who is there for him when she is home. James was an intruder who took Andrea away from him……..a stranger who was going to make life uncomfortable for Aaron during our special evening.
Sure enough, Aaron was less than enthusiastic to meet James. During dinner, as we talked and laughed, Aaron kept muttering comments to me about this situation. Thankfully, Aaron didn’t have a full blow-up about James, but he was certainly not happy with this turn of events. It would be so helpful if Aaron could just express his feelings verbally…….but he usually can’t do that, at least not right away. So we tensely muddled through the moment, hoping that Aaron was not too terribly embarrassing to us or to our guest. And what a blessing that Andrea is very understanding of Aaron, and was able to smile and put us all at ease.
Later we played Christmas Bingo, and once again Aaron was very unpleasant. He doesn’t like parties, as he sees the laughter and the silliness that may ensue as being abnormal. Yet he wanted to join us, even as he sat there making comments about how Gary called out the Bingo moves and being very rude when we tried to calm or correct him. We were honestly relieved when Aaron went back up to his room and we could continue the evening without worrying about Aaron telling us all very ungraciously about how weird we were and that we needed to shut up!
Christmas day found Aaron a little unnerved because we decided to open gifts in the living room instead of the family room. Change!! And change does not go over well with Aaron! The family picture in front of the Christmas tree was an exercise in futility for us, as Aaron did not want his picture made when it was just time to get on with the gift opening. And opening gifts, for Aaron, involves a process. He must have his little Swiss Army knife for cutting the paper; and he must open each DVD or PC game right away with his knife; and he must put the DVD wrappings and tape in his trash can from his room that he has sitting right beside him. He shows very little emotion as he continues his mission of opening his presents from beginning to end……….and then it is over and he must move on to the next day’s event.
The day after Christmas, Aaron was up and about as usual. He drank his coffee and he took his pills and he talked a lot as always. He was upstairs talking to Andrea, as normal as ever, and then walked down the stairs………..and we heard an awful crash. Aaron was having a seizure. He had fallen backwards at the foot of the stairs and was laying there on the hard floor, seizing. It was terrible and was very frightening to all of us. Aaron’s seizures have been in his sleep for years now, so this breakthrough seizure was very surprising. He finally stopped and Gary placed a pillow under his head as I covered him with a blanket. Aaron is too big for us to move, so he slept there for awhile as he recovered from this episode. We checked him for blood and we worried about a concussion, but later when he was able to be helped to his bed we felt that he was all right.
He has an ugly bruise and some scrapes on his upper back from hitting a piece of furniture when he fell. We are very thankful that there was no major injury to him from such a hard fall. I’ll be taking him to the lab for some blood work to check his levels. Keith, Aaron’s nurse practitioner, told us not to be alarmed at this seizure and not to assume that these will continue. We hope this is true. This episode has made us face an element of fear that we haven’t had for a long time. It makes us realize how serious seizures are and it jerks us back to the reality of how fragile Aaron’s health is. How fragile, and how very dangerous and serious.
And our love for Aaron was confirmed as we struggled emotionally, watching him lay on that cold, hard floor both during and after his seizure. He yanks us around a lot…….one minute we are laughing because of Aaron and the next minute we are so frustrated with his behavior. The frustrations melt away when we see him so vulnerable. We know that life for Aaron will never be normal or easy. Life for Gary and I will never be normal or easy. But it’s the life that God has chosen for all of us……….for Aaron, for Gary, for me, and for Andrea and Andrew. I pray that we will trust God as we travel this road, and that we will bring glory to God as He enables us to move forward.
Christmas is a season of light and of hope. Aaron points us to that light and hope in ways of which he is totally unaware. Whether through our joyful laughter or through our gritted teeth, Aaron does have his ways of pulling us back to Him on which our dependence lays. And I believe that Aaron will receive a great reward for fulfilling that purpose of his life.
Christmas is also a season of gifts………..and Aaron is our gift, one which we continue to unwrap and try to understand every day. He comes with a no-return policy and on some days, that’s a very good thing! On Christmas Eve, I told Aaron not to come in the bedroom where I was stuffing the stockings. He replied, “So you said you were doing my personal present?” He was sweet and hopeful.
God has given us a personal present in the gift of Aaron. Even on the hard days, we are especially blessed.
We love you, Aaron!