Next Monday

Next Monday is the first day of the rest of my life.

Four years ago I set my nursing career aside. Three years on the job and that would be it. Although I loved the patients, I felt I was too type B to ever truly succeed in the field. I just wanted to smooth fevered brows, rub tired muscles and listen to the stories my patients wanted to tell. What with all the running here and there and charting, and arrogant physicians barking and scowling, it seemed the important work never got done.

So I stayed at home, sat at my desk and wrote. I wrote and wrote and wrote about facing the loss of my father at thirteen, about trying to make sense of the world after that. But I didn't write much, or talk much either, about what it has been like to lose the hopes and dreams I had for my youngest child, when he was three years old, when autism came calling. I kept almost mum on the subject, only writing entries here just after particularly memorable visits with Caleb.

Because to write about, or talk about, a loss that has no ending is to open up a privately seeping wound for all the world to see. Air blows on the wound, someone accidentally brushes it when walking by; this thing hurts. Yes, IT HURTS. And I don't want to think about it. Thinking about it HURTS TOO MUCH. I would see Caleb, decompress from the visit a bit, and then place my precious son back in the box where I kept him. I guess it's a box I call "coping mechanism."

But prayer works. Got has slowly, methodically, miraculously, brought me to a path that on my own would be impossible to tread. Next Monday I begin my new job as a nurse at Brenham State Supported Living Center. Yes, where Caleb lives. I will be near him and see him more often. The patients that I serve will be a lot like him. I am facing my nemesis - autism and other forms of mentally debilitating diseases - head on. And I'm not afraid.

By God's grace, I know I will not stop crying for the "loss" of my child, but I will cry less, because I'm where I'm supposed to be, doing what I can do. Finally, I've stopped running. And the air feels fine.

Skinny

Caleb is very skinny these days. Not sure why. Everything falls off of him. Today we will visit and I pray that he looks better. At one point he was noticably overweight and this was due to medications, which was also worrisome. Since the stint at Austin, he is on barely any meds at all. With this med reduction, I have noticed some regression as far as language use and level of compulsion. I pray and pray for my child, yet feel helpless to change his life most of the time.

This blog: This blog is quite skinny as well. I know. Most of the time it seems I'm only confirming, to some of you, that you aren't the only ones with feelings of inadequacy or despair. Maybe that isn't enough. All comments and suggestions are welcome.

Well, here is a positive thought: Today, the sun still shines, rain still falls, plants continue to grow. Yes, we are alive under God's watchful eye, and there is hope.

Enough

It's been a while, but a son in the state mental hospital is a daunting experience. I can only speak for myself, of course, so that is what I do.

Tuesday's visit: a fair amount of pacing; great smiles; a banana inhaled; coloring; leaning his cheek to my face, then the other cheek, several times, for one more kiss; at the end, he listened to my story reading and fell soundly asleep.

The drive to the visit - apprehensive. Used distraction techniques and compartmentalization to overcome memories of Caleb putting small objects from the environment into his mouth last time and the fact that the new clothes I purchased had still yet to be worn and seemed to disappear on the day I presented them, appropriately labeled, to the state hospital worker.

The drive home - relief. God's merciful presence at every turn. This is enough.

Resurrection Blessing

Well, it seems March just poofed by and here we are in the middle of April. I think that is because March was sort of horrendous for Caleb. He visited the ER for twelve stitches in his head and has broken those stiches apart a few times since then. He is now wearing a helmet and big, puffy mitts on his hands. My last two visits were not so great, because I generally depend heavily on an itinerary of one hands-on activity after another. I take my bag of tricks - puzzles, coloring etc... - and we work together as if I were his tutor. I get my Mommy talks and hugs and kisses in there. He gets his smelling of my hand and touching my earrings and hair in there, but the structured activites really work for us. This helps keep pesky obsessions under control. But you can't very well put together a craft or a puzzle, sort colored marbles or even eat a snack with huge puffy mitts on. So after last weekend, which was truly a disaster, I hesitated to visit my sweetheart today. But I couldn't help it. It's Easter tomorrow, he goes to Austin State School on Wednesday for a thirty day placement - medication adjustments - and I wanted to see him very badly. So I went. I thank God I did. My prayers were answered. Caleb and I had a precious time. He did not remove the mitts, manhandle me or hit his head until it bled. Instead, he watched me work a puzzle while I talked to him and he listened and sometimes replied, he watched me color a picture and again listened, and he listened to a storybook and about fifteen minutes of The Bible. He laughed. He hugged me twice - spontaneously - and did not cry once. This is my Resurrection Blessing! Praise to God, who is always good.

Sweet Sleeper

My visit with Caleb was sweet and odd. He was very sleepy and kept sleeping and waking up periodically to look at me and smile and wrap his arm tighter around my arm, smell my hand, and pull my arm and hand to his chest. Then he would go straight back to sleep. Other than that I just sang to him, talked to him, prayed for him, and gently massaged his arms, touched his face and hair—all while staring at him while he slept. Dan raised a lot of money for the school, through business contacts, and so now they are talking about what to do to make Caleb's room nicer. I said if they would give him a little extra attention it would be worth more than anything money can buy. The house manager took Caleb's Viewmaster and locked it away for him to use once or twice a day, as I have asked many, many times before. I guess she felt sorry for me because I almost dropped a tear when I said if he could have some of his things locked safely away and then offered to him daily, that would help me to be a little less broken-hearted. I said that would be much more important than a new dresser. After that she also suggested a rug for his room, which blessed me. I didn't think anyone there gave much thought to his comfort, like bare feet on a cold floor in the morning, or bare feet on a nice, soft rug. Now I know that at least one person cares. Also met a nice night nurse who said sometimes Caleb plays possum. I know he does. I was glad she knew that from her own observation. God is good. He holds Caleb's hands. Thanks for listening.

My Valentine

Valentine's Day will soon be here. I'm reminded of one of my favorite Valentines. I have a picture, but it's part of a collage now, hanging on my office wall. Caleb had just turned four, so it's 1988. He wears a paper crown which I think was decorated by his brother and sister. Of course, the crown has red and pink hearts and cute designs all over it. He also wears a soft,checked, red, white and blue flannel shirt. A yellow, paisley patterned bandana covers his neck and chin. (Big sis definitely decked him out in that bandana ☺) He looks like a prince, holding court on the couch. Caleb's eyes, and all of him, smile straight into the camera lens. I hear the giggles of the chubby little guy. A beautiful memory.

Let's all cherish those we love. ♥

I Love You

Yesterday we played cards, smiled, laughed, held hands, smelled hands, read books, colored, chewed gum, shared a snack, took a car ride, hugged. Yesterday, for two hours and change, I forgot everything in the world but you. I love you so much and am unable to help you out of your seemingly sad existence. Some people say you are happier than I imagine, because your mind works on a different plane. I am thankful for a certain understanding you must have with God and nature and yourself, an understanding which keeps you here, keeps you from leaving the world. For this I am thankful. Because I hold out for a time when a miracle happens. That's a day when I know how to really help you, or someone else does, and you know how to be helped. You know how to communicate fully in this lovely time I'm dreaming of. You never bite yourself or bang your head again. You and I discuss everything under the sun. You stop asking for another car ride all the time. I stop crying on the way home from our visits. I take you home with me, to stay. We cook together and fold laundry. We watch corny sitcoms and play Scrabble. We stand in line at the post office and we are peaceful. We are healed.