I thought life was a roller coaster before.......now I see I didn't even know the half. Our family has learned to adjust to the unexpected and take days as they come. This is a lesson adults sometimes have a hard time with---imagine the maturing my girls have had to do to accept God's daily will (sometimes hourly!) for both themselves and Dale.
Usually we can tell what kind of day Dale is going to have by how well he is able to get around first thing in the morning. If he is really shaky and unsteady, that's usually how he'll be the rest of the day. Conversely (not the tennis shoe!), if he is fairly steady, that generally means he will be okay for the day. This does not exclude the possibility of falling from having his leg buckle, but it's a fair guideline.
Wednesday morning: not good. In fact, really bad. And it was, indeed, indicative of the pattern for the day. :-( Dale woke up and started to get dressed.......and that's when the trouble began. He was shaking and jerking quite a lot; this, of course, caused innumerable problems for him as he struggled with various buttons and laces. He almost had a seizure just trying to get his sweat pants off---literally. We heard him cry out for help. Amanda, Katie, and I raced into his bedroom to find him fallen over sideways on his bed, limbs jerking uncontrollably. His eyes were super wide and full of fear; he was aware of the jerking but unable to stop it. I managed to get him sitting up which helped him pull his brain back from the seizure. He told me, "Mom, I could see the room getting dark. I almost had a seizure!" Dale was crying and scared and really mad at me for not teleporting instantly to his bedroom the second I heard him call out! Eventually he calmed down and tried again to get dressed for the day. Again, he found himself in difficulty and had to cry for help. His bedroom door was left open so we could hear him call out (modesty being the least of our worries), so we were able to come right away. Dale had no control over the jerking, which kept him from being able to pull on his pants or button his shirt or tie his shoes. This did not bode well for the rest of the day. Eventually, either Amanda or I had to remain in the room with him to assist him in dressing and help calm the jerking limbs---something we have not found necessary for a couple of months. Getting Dale to the bathroom to brush his teeth was a challenge as well. Every stage of his morning routine took at least twice as long. At this point, I should have listened to my instincts and kept him home, but I was hoping things would settle down. (Sometimes, he is shaky first thing but steadier as the day goes on.) The next obstacle was the stairway. Dale managed to actually step down only a few times; the rest was spent either "falling" (sitting down halfway through the stepping) or scooting down on his bottom step by step. We finally made it to the first floor where Dale sat down, much relieved. Keep in mind that Dale's mental perception is around 90% of a "normal" seventh grader, so he is very much aware of everything going on in his body and brain; he is aware that his older sisters would not normally be allowed into his room while he is changing clothes; he is also aware that this is the way things need to be right now. Acknowledging these facts does not keep Dale from wishing things were different. Every day he struggles against his unsteady hand control in order to write words and numbers for school. He knows, and it's frustrating for him.
By this time, we were hopelessly late for school. My younger girls were so good, getting ready and waiting quietly until the rest of us could go. My older girls were such blessings, looking for and doing such as needed to be done, whether it was helping with Dale or assisting the younger girls. Dale and I slooooowly made our way to the car with Amanda walking behind. Good thing, too, because she had to catch him a couple of times. He had almost no steadiness in his limbs, and his legs would buckle without warning. Usually, if his leg buckles, he has a chance to catch himself---not so that day! Dale got himself in position to climb into the van; he got one leg up, but when he tried to lift the other leg, both legs gave way. I helped "push" him into his seat where he was able to scootch around and get settled before buckling his seatbelt. We arrived at school about twenty minutes late. Thank God for an understanding secretary who marked the tardies as "excused." I took Dale in my classroom to start work for the day but soon discovered that his brain was in no condition to work properly. Dale needed to finish one question on a page in his science PACE, but his hand wouldn't cooperate and allow him to write legibly. He began to get frustrated again at this inability to write easily, so I had him stop for the moment. I compared his handwriting from the day before to Wednesday's sample; the difference was obvious and saddening. Dale simply did not have the control that he usually does. His letters were misshapen as his hand jerked the pencil repeatedly. I decided not to push the issue of writing at that point.
Dale did attend one class---history---and seemed to be all right. I informed the teacher of Dale's rough morning and warned that he would probably fall out of his seat if he tried to pick up even a dropped pencil. After history class, I tried to walk with Dale back to my classroom, but he fell a couple of times. Amanda finally stepped up behind us and walked with us, catching Dale as needed---and he needed it. At this point, I decided that enough was enough. I was taking Dale home! I called my husband to get his approval of my decision and then called PT and cancelled the 10:30 appointment. Spring pictures were on this day, but Dale had already had his taken, so we were free to leave. Ashley, Dale's next youngest sister, helped carry my things to the van so I would have both hands free to help Dale. Even so, another sweet teacher came alongside and assisted Dale as well. It must have taken us ten minutes to get from the classroom to the van. I think we all breathed a sigh of relief when Dale was, once again, ensconced in the seat.
Once home, getting Dale into the house was not a problem. I had a feeling that instinct would take over and that Dale would naturally do better going in than coming out. Praise the Lord! He walked into the house and over to the table to sit down with just a few pauses. And, it seemed that, now that he was home and "safe," he could relax and not fear falling or having a seizure. We spent the rest of the day quietly, letting Dale's body and brain calm down. He still experienced the jerking throughout the day, but these did not interfere with his ability to sit in the easy chair and watch TV! Chad chose to keep Dale home from Wednesday night church and not require him to try again that day to go anywhere. Good idea! Dale had had enough "exercise" to last awhile!
Thursday was much, much better! Physically, Dale was back to his regular, just-a-bit shaky self. He could walk down the stairs fairly well, write when doing school work, and walk with minimal assistance. Mentally, he was raring to go! (Are you ready for the proud mother bragging part?) Dale completed two history lessons, two math lessons, two grammar lessons, and one science lesson, as well as two Hidden Pictures papers (just for fun) and a session playing computer solitaire after lunch!!! Amazing, right? I kept teaching, mixing things up so as not to tax his brain, and he kept listening and learning. YES!!! What an indisputable sign of God's miracle! Dale does well learning for longer periods of time if we don't spend three straight hours on one subject. (Really, who would?) We did some math, then some history, then grammar, followed by lunch; then we covered more math, more history, more grammar, a couple of Hidden Pictures, and ended with science. Altogether, it was a great school day!
I was talking to God this morning yet again about my personal desires and wishes for Dale. I always make clear to God (and the devil who might just be listening too) that I desire His will above all else and accept whatever He decides is best......then I hasten to tell Him that, if He wants to heal Dale straight out, that would be great too! God knows my heart; He knows I trust Him implicitly and will follow Him regardless of circumstances or wishes granted. (I'm making God sound like a fairy godparent!) I mean, prayers answered. He blesses us so much daily that asking for any more seems ungrateful, at the least. Yet He tells us repeatedly in the Bible to ask for what we want. Sometimes the answer is "Yes"; sometimes the answer has to be "No." Sometimes God makes us ask over and over and over again, not because He is being spiteful, but because He wants to see just how much we really want our petition answered. He is, above all, loving and kind---and, most definitely, in the business of answering prayers. So I continue to ask for Dale's full healing and trust Him with each day as it comes. I have plenty of doubts and fears; there are many times that I complain about things and even question why He allowed certain events to happen. He patiently listens and almost always brings to mind a Scripture that answers my questions. I don't fear His wrath for my weaknesses; I know I can bring Him all my problems and failures as well as my successes. He's a big God; He can handle it. I am so blessed to call Him Abba......Father.
II Corinthians 13: 14 "The grace of our Lord Jesus Christ, and the love of God, and the communion of the Holy Ghost, be with you all. Amen."