Joey still thinks that helium balloons are hilarious! Shaking the ribbon, and making it bounce up and down sends him into hysterical laughter!
This morning, I handed him one of his hand bells, not knowing if he would remember them. His eyes widened, he reached out his right hand, took it, and then shook it like crazy, smiling, and saying "BELL!" Later, he shook it again for a long time, laughing uproariously! This gives me great pleasure, since they wouldn't let him have them at the nursing home. How could a hand bell not be "age appropriate" when adults have hand bell choirs that you have to pay, to hear? Oh well, my son is home now. That is what matters.
June 18, 2004 - It's a wonderful sunny day here in the mountains. Joey is wearing a shirt with the lion cub on it, and it says Mane Attraction. Joey is amazed, outside, watching the trees in the wind, my clothes blowing on the line, and the sparkling water in the waterfall. Since he has been inside for so long, I am going to keep him in the shade as soon as I take his pictures. Caressa is in her chair beside him, watching him with interest. He glances her way now and then, covertly, as though he is figuring out whether she will do something fast or loud. They grew up together, but he was the little brother. When he was a shy five year old, she was a loud, social twelve year old. The only thing they had in common was that they couldn't walk, talk, or eat by mouth. Their personalities were worlds apart. I wonder if he remembers her. They grew up together, but then, there were many brothers and sisters. Well, with her curious nature, and her attention to him, he'll probably remember her soon. If they don't remember each other, then they will learn to know each other again. Caressa is no longer loud, and she smiles so sweetly. I think they will be friends. These years, they appear to be the same age, as grown people do. A few years here or there no longer matter.
Joey learned to say a new thing during his stay at the nursing home. Whenever he is alarmed, or feels like something might happen that he doesn't like, he says "say good-bye!" It's actually a helpful word. He and Caressa were sitting side by side, and suddenly Joey said loudly and urgently "SAYGOOD-BYE! SAYGOOD-BYE!" I went to them, and she had leaned way over, and gotten a hold of his wheelchair, and was pulling on it a little. There was no danger, but he didn't like her jiggling him. So I moved her farther away. Since he only has a few words in his vocabulary, this is kind of cute! He certainly has the right to have her keep her hands off his chair! And I'm glad he can say so!
June 19 - 2:00 A.M. I just went in to watch Jo-Jo sleep. He's sleeping in a night shirt that says There's Only One Of Me. He looks so handsome in his adulthood. I love the Hispanic in him, dark, beautiful eyes, nearly black curly hair, mustache. I wonder what he would have been like, if he weren't brain damaged. As it is, he is my little boy, and it's so good to have him home again at last.
Joshua would have looked a lot like him. Joshua had a longer upper lip, and a wider nose. But they both had that dark wavy hair, and those lovely dark eyes! Oh, how I wish they were both here.
But how blessed I am that my son Joey lies in a soft bed, beside a big window he loves to look out, and with so many pleasures that I provide his sister Caressa, that are still to come. It will take many days to show him all the old things he knows, and all the new things he hasn't seen yet. He has always been, and still is as limp as a cooked noodle. He was a frail preemie, and never grew very much. He was never designed to be a big man. He was a slender little man when he went to the nursing home, and I could lift him by myself, the same as I do Caressa, who is a hundred pounds. The nursing home put him on all kinds of medicine to help him digest, and he's a heavy little man, now. 117 lbs. Moving him is kind of like trying to get a hold of a pillow full of water. I move him up in his bed the same way I have with many children when they got too big - gently pulling him with handfuls of his shirt or pajama top. He finds this hilarious! When he's getting up, my husband, or Jordan, Joey's twenty year old brother, lifts him effortlessly from his bed to his chair, and later, back to bed.
I am just so happy. I feel like I have a new baby. No one goes in to watch their twenty-one year old son sleep! Well, unless he has been away for a long time. And my child has been away for a long time. Now, I must calm down, and get some sleep myself. Praise God, from Whom all blessings flow. It is so good to set his medicine cups and syringes out for the next day. Put the morning meds to melt, and have everything in order, the way I do for Caressa. I have always enjoyed that routine. For me, it's just part of putting a beloved child to bed, arranging for their medical needs. Oh, I'm just so keyed up. I'll have to go lie down, and pray to sleep.
What a wonderful year we have coming! What will he think of the snow! Caressa loves to watch it come down, for four months. Joey will watch it too, because it just keeps coming down, and he loves to look out the window. But he has very rarely seen snow, and this beautiful mountain is a lovely place to bring my beloved son.
June 20 - today, Joey said "mama" for the first time since he's been home. I've been telling him for two and a half days, in case he had forgotten me - the way I did when I first adopted him, patting his chest, and saying "Jo-Jo," and then patting my own, saying "mama," and he has been looking attentively at me, and smiling. Well, today, I was a few feet from him, and he said "mama!" I whirled around, and came to him... "JOEY! You said MAMA!" I exclaimed in joy. He began to laugh. "Mama," he said again, waving his arms in excitement, "mama!" Several times, as the day went on, he did this again! I knew he knew me by sight, but I was unsure whether he remembered that my name is "mama!" Now, I am sure he remembers. Tonight, I tucked him in, with his nightshirt that says I like the way you like me back! It has been a wonderful day. I wonder how long it will be before he starts saying his own name again - "jo-jo." If no one called him that, at the nursing home, he might have forgotten it. But maybe it will come back to him. It took me years to teach him each word that he knows. It will be interesting to see if they all come back. (There aren't very many.) He definitely knows the word "window," for every time he is in bed, and I ask him if he wants me to open his window, he turns his head to look at the window, instantly. Then I open it, and he works until he gets his hand outside! He's crazy about getting to put his hand out the window! Several times I have gone outside, and put my hand out, and he put his hand in mine - we held hands through the window! He seems very surprised each time, to see me! At the nursing home, he was on the second floor, and I don't think there were faces in any windows up there!
June 21 - This morning, for the first time, Joey said "Jo-Jo!" I was so excited! Joey is in his shirt today that says That was funny! Do it again! (You can tell I had great fun buying these shirts for him!) Today, he has shown me two new things he remembers. I've been putting on videos - new ones, and old ones. He ignores the new ones. But when I put "Raffi" on, he turned his head around, and latched onto it with his eyes! He grew up with Raffi, and he has not forgotten! Later in the day, I put on "Winnie the Pooh," which his sister Caressa does not have the slightest interest in. Joey turned his head to look at it too. He grew up with Winnie the Pooh, and though I cannot tell if he comprehends it, he does remember it.
Tonight, I tucked Joey into bed, put on a Praise and Worship DVD on his big-screen, which he has appeared to be enjoying, and went out for a while. All of a sudden, I heard the sound of his crying. It's the first time he has cried since he has been home. I went in, lowered the side, gathered him into my arms, rocked his upper body back and forth like I used to, and told him I was sorry, many times. I didn't know what was wrong. I was thinking, let's see, no, he's not constipated, no, he's not hungry, he might be lonely for someone in the nursing home, or, perhaps the bright light above his bed is bothering him. So I turned the light down, and held him some more, telling him I was sorry. Whatever it was, I was. He said "mama" many times, and reached his awkward right hand up, getting a handful of my hair. But he did not pull. He just stayed there, calming down, and saying "mama." Do you suppose he is wondering if he is home to stay? I feel so sad that he was sad. I told him "I want you to be happy, Joey!" As I held him, rocking him back and forth like when he was little, he calmed down altogether. Then, of all things, he said very clearly, several times, "I KNOW." "I KNOW." I told him I knew he knew lots of things, but he kept repeating all kinds of sounds that made no sense, through my talk. What I think, is that some kind nurse maybe used to tell him "I know," when he cried, to comfort him. Like "say good-bye!" He has learned what he has obviously heard countless times. "Joey!" I exclaimed, playing with him now. "Say hi, mom!" He smiled at me. "Joey, say 'hi, mom!'" Of course, I don't want him to tell me "say-hi-mom" the rest of his life! But if I just tell him "hi, mom," he might think I'm calling him mom. Hmmm. Anyway, I talked to him, and stroked his hair like I used to, and was so very, very happy that he became all happy again, and laughing. Thank God, he still can be comforted by his mama. And he is a very content, pleasant and sweet little boy-man. Having a bleeding ulcer in his throat was a severe trial to him, as well as to me. I'm so glad he's well.
June 26 - I am so pleased that Joey is learning to be calmer during baths. I tell him I will not get any water in his eyes, and I wash it while he is lying on his back. He is already beginning to lie still, though he still cringes, shuts his eyes, and makes anxious noises, but he listens to me. I tell him "I am mama, and I love you, and I won't let any water get in your eyes. I know you don't like water in your eyes. I am careful. See, I am being very careful!" And so on. I think the time will soon come when the whole bath is an enjoyable thing for him. I go slowly, tell him what I am going to do, and do it gently. And, though I don't know if he understands all my words, I do know he understands what I mean. That he doesn't have to worry. That I am smiling, and going slowly. What a treat for me, that he listens, and his behavior is getting calmer!
July 2 - Today, for the first time, Joey has been having fun with his sister Caressa! He was in his bed, and I pushed her in her wheelchair up against his bed. Then I hooked a bunch of shower curtain rings on his hospital bed rail, and, of all things, they both began to jingle them, and move them back and forth, playing together! They both look at each other, and smile. This is wonderful for Caressa, because she has tried endlessly to attract the attention of her sister Cassie, who ignores her so steadily, it seems like a career. Now, Caressa's brother is home, and they are both social. What fun! I'm not certain if either one of them remember each other, so I keep telling them - "this is Joey, your brother! This is Caressa, your sister! Now you can be good friends! You are friends!"
July 4 - Joey is a teaser! Tonight while I was working to clean up his poopy mess, he kept hollering "saygoodbye!" So I started saying to him "Oh, Joey, you should be saying 'THANK YOU, MOM!' That's what you should say! "Thank you, mom!" And then he looked at me, and grinned in a mischievous way, and said quietly, "mama?" Of course, I was all over him with hugs and smiles and laughter, and we were both happy. "You said 'mama!' I exclaimed, 'you are so nice!'".
July 16 - Joey has been home one month today. He was perfectly fine until his first appointment with our family doctor here, on the 7th. He had a real trauma after that visit. Getting his blood drawn was definitely something he remembered, and hated. But I don't think that was the problem. He screamed and hit himself in the face for days and nights afterward. His emergency medicine only helped a little bit, for a while each time. I think he thought he was going back to the nursing home. Or perhaps, going somewhere else. Who can say what his thoughts are like? On the way to town, I told him over and over that we were going to the doctor, and then "home-again, home-again, jiggedy jig!" Because that was always how I explained doctor visits as he was growing up, before the nursing home. While he was complaining at the doctor's, I kept telling him: "We're going home soon. Almost done. Almost done, Joey." But the following days, he could not be calmed. I tried everything. Only by the 14th, did he calm down. That's an entire week. Who can possibly tell what was going on in his mind. Anyway, the important thing is that I kept telling him I love him, and that he was home to stay, and that he was not going anywhere new, that I am his mom, and he's stuck with me now. But if he can think at all, why should he believe me? All he knows is that he got sick, went to the hospital, then to the nursing home, and now he's home again. He may well think it could happen again. All I can do is love him, comfort him, and tell him the same things over and over. Poor little one. My poor little one. Only this morning, was he calm, and smiling again, during his bed bath. He'll be okay, but I am so sorry.
July 17 - Today when I told Joey "I love you!" He said "No." I said "yes, I do, I love you!" He looked at me. Then I said, "I'm so sorry you were so sick, and had to go away for so long. But now you're all better, and you're home again! I love you!" Just in case he understands.
July 18 - Yep, I can safely say that Joey is back to normal. This morning, when I asked if he wanted to dance, he smiled his mischievous grin. He knew what was coming. He put his right hand out. (I used to "dance" with him a lot while he was growing up.) When I took his stiff little hands, and swung his stiff little arms back and forth, singing "sugar in the morning, sugar in the evening, sugar at suppertime - be my little sugar, and love me all the time... honey in the morning, honey in the evening, honey at suppertime - be my little honey, and love me all the time... " his smirks and chuckles and sparkling eyes told me how much he enjoyed that. His peace is back, and he's not needing any emergency medicine any more. His fear of the unknown, or whatever the doctor visit did to him is gone. He is home, he knows I love him, he knows what to expect from me, and accepts all that I do with him. I feel such a great sense of triumph!
July 30 - Oh, Joey's homecoming has been so triumphant! He is enjoying this sunny mountain summer, and bonding to me clearly, more and more. I know he must have loved the kind people at the nursing home. And I'm so grateful for everyone there who truly cared about him. I am also grateful that he is able to enjoy me again, and bond to me again. I am grateful to be able to give him all the joy in life that he deserves, and all the joy that I can give him. I pray he will never have a bleeding ulcer in his throat, ever again! The nursing home was able to get him on medicines that I was never able to get him on at home, before. I asked, but was not offered. Therefore, I did not even know there WERE medicines out there, that could keep a person from dying from their reflux. Joey is on a LOT of medicine for reflux. If my Joshua could have been on all of this, he probably wouldn't have died of his reflux. I am so grateful for Joey's medicines. And so happy that he is home again at last! Oh, by the way, I can lift him in and out of his wheelchair again, though it is a strain. My "Joey-muscles" are returning!
Aug. 2 - Joey is looking like an old soul this night, about an hour before sleep - perfectly motionless, peaceful, meditating, staring at nothing, unblinking. So very still, I have to anxiously look twice. Who could say what he is thinking? Or IF he is thinking. I walked to his bed tonight just silently, watching him. After a few seconds, he turned his eyes toward me. With smiles, and soft talk, I spray his slightly sweaty chest with ginger scent body mist, and pat it, to help him feel cool, on this hot summer night. "Mmm! It smells good, Joey!" I exclaim, sniffing deeply. "It smells good!" He sometimes seems to sniff, and smile. Tonight he just smiles. Then I sprinkled his arms with baby powder. "Do you like this?" "No," was his quiet response, then some carefully articulated mumblings, which I am sure had thought behind them, but I could not catch a word. "Oh." I said, as always, as though I had understood him.
"I love you, Joey." I say, holding his hand, and finding it sweaty, putting a tiny spray of ginger in it. He looks at me. "I love you, Mama loves you." He wraps his fingers around mine, and looks at our hands. I watch his face, wondering what sense he makes of the recent events of his life, or the past events, for that matter. I am so glad to have him home.
We go on for a bit with this peaceful exchange. Then, all of a sudden, he says "good graw, go." This sounded for all the world like "good girl," though I have never heard him say it before!" "You want me to go now?" I asked, trying to encourage him to communicate, as always. "Go." He said firmly, but perfectly nicely. Then, "bye." I let go of his hand. "Okay, honey, I will go. Bye!" I said, as I slipped out the door. I listened. He made no sound.
I do believe he really meant it. He says so very little, and tends to repeat himself, so it has been difficult to tell what his talk really meant, all his life.
I never felt so happy to be dismissed from someone's company! Joey talked. He did not scream or holler, leaving me uncertain as to what the problem was. He talked.
August 17 - Joey has been home from the nursing home for two months now. I have, just in the last week or so, figured out something new about him.
Joe-Joe desires to lie the opposite way in the bed, than I had him!
He has kept up a steady, grumpy attempt to turn himself around in the bed to put his head at the foot. Every time he was in bed, he was attempting to turn around. But he is a bit too long, and can no longer do it, as when he was younger. He always got stuck midway. Then he would scream, hitting himself in the cheek.
I have been watching this, puzzling over it. Wondering why he always went one way - why he was so insistent upon turning around at all.
But one day, despite the fact that his doctors have always told me to keep his head up, I helped him complete his turn around, so his head was at the foot. He relaxed, and stopped screaming.
Within hours, I could see at least three of his points of view. He was able to grab the feeding tube while I fed him, and jerk quite wildly upon it, laughing. He was able to grab my hair while I fed him, and jerk it very hard, laughing. And he was able to see his two sisters, at the other end of the room. Now this last, is doubtful to be much thrill. One - he is not a very social person. Two - he does not really appear to be looking at them, and only one ever glances at him. So I think it is all about being naughty, and laughing about it. The nursing home has taught him well to be naughty. Why? To give them every benefit of the doubt, I guess they thought they were playing with this poor little man. But instead, they were teaching him to be naughty and mean, and think it was funny. These are new skills, which he never did at home; and I guess it frustrated him not to be able to do them. For he cannot, with his left hand, which was nearest me before.
This must mean he is able to reason a little - "if I struggle, and pull the rail, maybe I can turn around. If I turn around, I can grab." I did not know he could really reason at all.
Well, I hooked up a longer tube, and looped it around the left side of his body, and fed him at his feet, so he couldn't grab it. I flopped my long braid around the other shoulder, so he couldn't grab it.
Then I moved his bed around, so that he can be the direction he wants to be in, and still have his head up, per doctor's orders.
He has been happy all afternoon, in bed, while I cleaned his room, folded the latest clothes, put them away, had a movie on for him on his own 20" DVD/VHS player. He didn't care a bean about the movie, as it was actually something for me. But he really liked the new activities!
I hooked a new toy onto the rail with a shower curtain ring, and he had great fun banging that toy against the others. He reached his hand out to me, and we played patty-cake. Many times! And I learned quickly that when he put his hand out flat, and close to mine, and waited, looking at me, that he wanted to play patty-cake. This was made evident when his eager, happy chortling accompanied his flat hand willingly meeting my own as I chanted the rhyme.
Now I see. His interaction with others is severely limited, when his right hand is away from them. And he wants to play, while looking out toward the rest of the room. He still enjoys looking out the big window on the other side, but can no longer put his hand out the window.
I feel quite triumphant to have discovered this, and I'm sorry it took me two months, but happy that it didn't take longer.
Here is my little man, lost in virtual wordlessness, somewhere between two and three years old mentally, who wanted to lie with his good hand out toward the room, and could not say a word about it. All he could do was scream, and hit his own face, to express extreme frustration. From that frustration, I worked very hard, thinking of everything that could possibly be wrong. After eliminating every possible problem, I came at last upon this thought.