Yesterday Aaron woke up very tired………or so he said. I finally agreed to let him stay home, but he did not get his keyboard all day. That meant no computer games at all. He could watch movies but not play games. I was gone to my PT appointment for a short time, and then later to my mother’s prayer group. Other than that, I was home all day. Home with Aaron. Home with Aaron and no keyboard. I love Aaron, but it was exhausting. Part of it may have been my mood……..I was just a little tired myself, and thinking of too many things to be able to enjoy Aaron’s non-stop talking. Seriously………for almost the entire day, he followed me everywhere. I did not want to talk about the Predator/Alien computer game that he wants us to let him have. I did not want to talk about the Airbender movie. I did not want to talk about what he had read in his Handy Science Answer Book. I did not want to talk about forensics. I did not want to talk about Cheetos. I could go on and on, but it makes me tired again. By the time bedtime rolled around, I was very thankful to pull the covers up and have a reprieve…….after two good night hugs and several, “Wait! Mom! Mom?? I wanted to tell you one more thing!!” I was brushing my teeth when I heard him outside our bedroom door. “Mom! Mom! Mom? Mom?” I opened the door, hoping he didn’t see my gritted teeth, and he gave me one more big, warm goodnight hug. That brought on the guilt, but I was too tired to really be affected much at that point.
This morning, refreshed and with rested ears, I was in the kitchen when Aaron thumped down the stairs to find me. He came into the kitchen and with bright eyes and a lilting voice, he said, “Mom! I’m not tired at all! I went to bed early! 10:59!” I smiled at the exact time that he mentioned. Dear Aaron! How can he be so precise in the matter of numbers, but so clueless as to the feelings that he should have been able to see displayed so clearly the day before all over his mother’s tired face?
We had a pleasant morning. Aaron wanted once again to stop at Dillon’s for more jelly beans like we did a couple days earlier. As we drove to meet his group, he was full of talk about the Titanic……..because he’s watching the Titanic movie, so this is his latest topic. Why did the smokestack break? Why was there an iceberg? Was there metal in the ship? What is that dancing place on the ship? Why were they using Morse code? What is Morse code? Do we use Morse code now? Granddaddy knew Morse code?! He was so intent in expounding upon the Titanic that I was hoping he wouldn’t notice that we drove right by Dillon’s. But not Aaron! “Mom, was there metal in the Titanic? Aren’t we stopping at Dillon’s?” I told him that we didn’t have time this morning for Dillon’s, and so he continued with his Titanic monologue.
We pulled up beside the Paradigm van, and as Aaron got out I handed him some Jolly Ranchers to take to Paradigm. This reminded him of the fact that I hadn’t gotten him the jelly beans………and he got angry. He yanked the bag out of my hand and slammed the van door…….but not before calling me a name. Then another name, and another……..each one a little worse than the one before. No cursing, but just mean old rudeness nonetheless. I so wish that Aaron could verbalize his feelings without acting like a spoiled 4 year old. Cody, his driver, was frustrated. I was, too, and embarrassed. This afternoon, Aaron called and launched right into his thoughts about a game he wants……..but I called his attention immediately to what had occurred this morning.
“Mom, I said I’m sorry!” I reminded him that he had not. “Well, I feel better now!” And I reminded him that I did not. “Well, when I got here today I was thinking in my mind that I’m sorry.” I told him that this didn’t help me at all……….and he said he was sorry, but I never really know if he is truly sorry or if he’s just wanting to put that chapter to rest.
I saw an article in our newspaper today with the headline – Caregiving is a Marathon. I thought of my day yesterday with Aaron. He was happy but being with him all day was so tiring for me. Then today………..he ended up angry and rude, which caused a different kind of tiredness for me. I’ve always thought of caregiving as involving the physical care of an aging or sick family member. But seeing that headline made me realize that caregiving is what Gary and I do day after day for our Aaron. We are still responsible for most of his care, much as we did when he was a small child. We love him so much and we want to care for him, but it does take a toll. I in no way mean to sound like I’m whining or wanting sympathy. These are just facts.
And I think of all the moms and dads that we know who are in similar, or much more serious, situations as we are. Those with little or no help, who are stretched financially……physically……emotionally…..spiritually. I think of the doctor appointments, the hope of a new plan or a new treatment that is slow in coming or may never be found. I think of the effect on siblings of having a special needs brother or sister, and the many ways that this impacts their family. I think of how hard it is to go anywhere…….to church, a movie, shopping, eating out, a vacation.
It really is a marathon, but we don’t get much if any time to train for this one. We often hit the ground running, trying to adjust to all the twists and turns of life with our special child. We find ourselves winded and stretched beyond what we think we can possibly accomplish. But then we see a smile on our child’s face…….a light in their eye……….a joke on their lips……….delight at the touch of a hand or a brush of their lips. Or of our lips as we kiss them goodnight……if they allow it!……….or as we say, “I love you.”
They may not respond, but we know that they know they are loved. Through all the ups and downs, the tears and the laughter, the tantrums and the sweetness……..there is love. We run the marathon, not knowing where the finish line even is or if we can possibly make it. But with God’s strength, and with the support and the care of our family and friends, we will make it.
We’ll run the race that God has set before us. One day at a time……..one hug at a time……one “I’m sorry” at a time.