I’m sitting here in the few moments I have before I wake Aaron up for the day, listening to my Dino Piano Pandora radio station. The song? “For I know, whate’er befall me, Jesus doeth all things well.” Old language, yes, but beautiful in its reality for all of us who know Jesus. He DOES do all things well, whether it’s in His beautiful creation all around us…or our new day that stretches before us.
None of us knows what a day will hold. But we do know that God holds us and holds this day close to His heart. He ordains and directs every minute. It’s up to me to claim this reality, no matter how large or how small are my moments in this day.
Aaron provides both of those kinds of moments for me…large and small. I never know when I open his door to wake him up just what our day will entail. Happy Aaron? Angry Aaron? Sad Aaron? Giving Aaron?
It’s always a balancing act, based largely on Aaron’s attitude but really, even more so on mine. It’s sometimes tough, really tough, to be patient and kind when Aaron is anything BUT that! I often blow it. But God is faithful and patient with me, and to Aaron, and for that I am very thankful.
Aaron asked on Sunday if he could take flowers to his favorite Paradigm staff and second mom, Barb. So on Monday he fought off the early morning grouchies as I reminded him of his flower plan. And later, after I checked the wait time, I threw in a haircut to boot. Now I had a very happy Aaron!
A haircut and beard trim improved his looks, and then picking out some flowers at Dillon’s improved his Monday attitude. A cup of coffee from Quik Trip finished it off perfectly!
Of course, he wanted me to go in with him to Paradigm and watch him give Barb the flowers. When we walked into her office, we found her on the phone so Aaron had to wait – which is something he rarely does well. But there stood Ashley, his friend…or I should say, his “sometimes” friend. They sure can go around at times, getting very angry with each other, but look at what they did that morning.
A HUG!! So sweet! And so unexpected that even Barb, though on the phone, reacted as I did. “Awwww!” we both expressed.
And then when Barb was off the phone, the happy flower giving took place, with more “Awwwws,” and smiles, and hugs. I drove away with a peaceful heart.
I picked him up that afternoon, still happy and with tales of all the French fries he ate for lunch. At least that’s the story he told me. I never quite know if his food exploits are all true, because sometimes he loves to give away money as much as he loves to give away flowers. He knows that giving away money is not allowed, so he’s become adept at telling me what he knows I want to hear instead of telling me what he really did with his money. In other words, he has become a gifted liar at times, sad to say.
So I balanced my skepticism of his story with relief at seeing him so happy, not wanting to discourage him or accuse him, yet still driving home the point that I do hope he really DID eat French fries. But he was already off on his next topic, reminded by his food story that the next day was doctor appointment day…and doctor appointment day means eating out day. Doctor visits take a major back seat to the real purpose…for Aaron…of doctor days. They are restaurant decision days!!
Aaron had a difficult time getting out of bed the next morning for his doctor appointment. It didn’t matter that I had well prepared him the night before concerning the time we would need to leave. He finally was able to push back the covers, take a shower (possibly! I never know for sure!), drink his coffee, and climb in the van.
I could tell that Aaron was very, very tired. On many days, he seems to be over-drugged. Sluggish…slurred speech…very heavy eyelids…wobbly in walking. This doctor day was such a day for Aaron, but I was actually glad. Now the doctor could hopefully see what I have told him…that I think Aaron’s weight loss is impacting his medicine dosage.
Again, more of what we must balance with Aaron. Seizure control balanced with his ability to function as normally as possible. Medicine’s benefits balanced with sometimes detrimental side effects.
Aaron is on a new seizure drug since his hospital stay in May for his video EEG. His seizures are much better on this new drug. We increased the dosage after one month, but then a few weeks ago we had to decrease the dose back again after he became too slow and sleepy. Yet still, Aaron continues to have many days and moments of still acting like he is too drugged.
Aaron was still droopy and tired when we arrived at the doctor’s office. Even seeing some of the staff dressed for Halloween didn’t inspire much of a response.
This look at Aaron shows how he really felt that morning.
The weight loss combined with the tiredness did concern the doctor. He is used to listening to Aaron talk about Independence Day movies or Captain James T. Kirk or Darth Nihilus, but there was none of that on this visit. We will be slowly decreasing one of Aaron’s main seizure drugs to see if that will help. Another decision to make…another issue to balance.
And Aaron had most definitely made his restaurant decision! No amount of sluggishness could dampen his usual eating-out enthusiasm. His choice? Denny’s!!
He was at first cold from the weather and slow in his reactions…
But that soon changed as he drank some coffee, ate his favorite side salad with no croutons, finished off his French fries after methodically dunking each one into his honey mustard sauce, and then successfully tackled his stack of chicken strips. If we ate out like that every day he just might gain back some of that lost weight!
Watching Aaron for just those two days reminded me again that we have many sides to our complicated son. In less than 48 hours we saw highs and we saw lows. We saw progress and we saw some steps backward. We smiled and we frowned. We felt relief and we felt our hearts grow a little heavier with nagging worries.
I remember once when Aaron wasn’t feeling well. He asked me if he had a seizure during the night, so I told him that he had a small one.
“That’s probably what’s with me today,” he replied.
Aaron’s epilepsy and autism are certainly with him every day. And in extension, these issues are with Gary and I every day. But remember the song I was listening to earlier? “For I know, whate’er befall me, Jesus doeth all things well.”
Sometimes the things He “doeth” aren’t what I would do, but I’m not in charge. God is! I know He loves Aaron, and loves Gary, and loves me. All that God does, He does well. I may not see it as well now, or feel it, or like it, but in my heart and my head I do know that all…ALL…He does and allows, is well and good.
And THAT truth is really what I want to stay with me today, and every day!