Can you believe Easter is almost upon us? I really don't like it when Easter comes in March; it seems almost as if the year is being rushed along too quickly, and we can't take the time to enjoy any breaks between seasons or holidays. I mean, I just took down the penguin and snowflake window clings at my house, and now I need to put up bunnies and eggs and such! That being said, Happy Easter to everyone!
I believe it is time to give you a realistic update on Dale's condition. Our family tends to "put on a good face" whenever we are asked how he's doing, without going into any details, but somehow I feel the time has come to be completely open. Please know that we are not asking for any sympathy, nor do we wish to sound like we are complaining---just stating facts as they truly are. We appreciate your prayers and continued support for us; it's so good to know we are not alone as we face each day's challenges.
Dale, quite simply, is not getting any better. In fact, he's getting worse. As time progresses, Dale's abilities decline and he becomes more dependent on those around him. There was a time during his recovery that Dale could walk without assistance, that we could stand at the bottom of a short flight of stairs and watch him walk up rather than assist him on each step, that he could get ready for bed on his own and turn off his light and climb into bed, that he could put away his own clothes into dresser drawers and closet without difficulty. Those times are past. Now we walk up and down stairs with him without being more than two steps away. Now we stay upstairs with him while uses the restroom and brushes his teeth before we walk him into his bedroom, and then wait in the hall for him to get dressed for bed before we turn off his bedroom light. Now we walk him down the hall to the bathroom from the living room, and back again when he is finished.
Dale needs my help getting into and out of the bathtub. He needs my help most times with washing his hair because he has to sit in the tub and try to scrunch down to a reclining position to rinse his hair, and this movement causes him to jerk violently. He cannot step into the tub on his own, and trying to get out of the wet, slick tub after his bath is almost always a wrestling match between him and me! He cannot stand for a shower because he no longer has the motor control to keep himself from jerking and then falling. So far, Dale does not need help using the restroom, but I honestly don't think that is too far down the road.
Dale's ability to walk correctly is severely limited. He continually hunches his shoulders, juts his neck forward, stares at his feet, clenches his free hand and grips his pocket or jacket, and takes smaller steps that his natural gait should allow. Walking across the gym can take a short minute or a long five minutes. He no longer has the ability to control any shaking or jerking that his limbs frequently exhibit, nor does he have the strength to walk more than a few steps without becoming winded. What's worse is he doesn't listen when anyone tries to give encouraging hints or suggestions to help him walk better. Dale does what he thinks he needs to and absolutely refuses to change. Going into a store with him is always a trying experience. I am usually the one to hold him by the hand and walk, for two reasons: no one else has the patience for it, and I know how stressful walking with him is and I don't want anyone else stressed out.
Dale cannot do most household chores. He cannot stand to unload the dishwasher. He cannot bring down his laundry hamper or take his clothes upstairs when they're clean. He cannot help clean the bathrooms or take out the garbage or vacuum. His sisters get frustrated because Dale's chores have been divided among all of us, while Dale sits at the table with his tablet. He does what he can, but that's honestly not much.
Because I am usually the one to walk Dale around, Dale has become more dependent on me. He seems to have decided that I am the only one he can ask for assistance of any kind: taking his plate to the sink, walking him to the restroom, answering a question, etc. Other family members have bought into this philosophy as well, for the most part unintentionally, by thinking that I can handle Dale's needs better than anyone else. So I have become Dale's primary care giver, thus assuming the lion's share of the responsibility and the stress. Naturally, this has made me feel burdened with caring for my handicapped son, rather than blessed to be able to still have my Dale alive and with me.
See what I mean by being open? I know we're not the only family to be struggling with caring for a disabled member, and we are definitely not looking for pity or tears. I'm also aware that circumstances could be a whole lot worse, and I am grateful that Dale can do what he can do. There may be some who will criticize us for complaining about "God's miracle"; please don't think that's what I'm doing here. God did indeed perform an amazing miracle when He gave Dale back his breath and heartbeat and life, and I do not wish that had been different. I do wish Dale had not given up once he realized God was not going to heal him fully, completely. I do wish Dale had not gotten angry with God for not allowing him to live the life he had decided on. I do wish Dale had not stopped trying to improve his physical abilities, because that is when he began to decline. However, I praise God for the wonderful works He has done in our family, and I continually pray that my spirit will be right so that I do not ever think how things might have been if God had only..... No---that kind of thinking is dangerous; it leads to discontent, complaining, self-pity, and the like.
Now you know what life in the Ostrander household is like. Simply put, it's all about Dale. Every thing we do, every outing we wish to take, every household chore we have to do---it's all centered on whether Dale can do it or not, or whether Dale can go there or not. Every thump we hear, we jump and worry if Dale fell and got hurt or not. Every time Dale falls, we worry if he put another hole in the wall or not. The older girls and I take turns walking Dale up the stairs to bed each night. We take turns getting Dale his medication each morning and night. We are versed in how to brace Dale when he falls so as to mitigate any injuries he may receive. We are always on alert in case Dale goes into a seizure. We literally don't make a move without considering Dale first.
Now, for the good news:
We've discovered, as people with disabled children do, that life continues after an accident. We've reorganized our lives to include the need for more time getting to/from events or locations. We've learned to stop and wait for Dale to slooooowly get the words out that he is trying to stay. We've decided to take each day as it comes and enjoy what we can. Some days, Dale can walk fine and talk fine, and our family kind of forgets that he's different now. Some days, it's all too obvious. I'm thankful beyond measure that Dale's mental faculties have returned to the point he is doing well in school and is on track to graduate next year with his class. I'm thankful that he still possesses his sharp wit and crazy humor. It's funny to us to see the looks on people's faces who, when Dale starts to speak, expect him to say something obtuse or irrelevant and are surprised to hear him "talk like a normal person." Oh, he has his moments when nothing he says makes sense---but then again, he is a guy!
There are days when we are screaming in frustration at our situation. There are days when we are overwhelmed with gratitude. But, most days, we just are. Most days, we just deal with it. We strive to remember: God's grace is sufficient for our daily needs. We are the ones who forget to use it.
II Corinthians 12:9 "And He said unto me, 'My grace is sufficient for thee: for My strength is made perfect in weakness.' Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
