Surgery Behind Us

We just got back from surgery; Owen had tubes put in his ears. I had a couple of flashbacks to when he got his first surgery, for an undescended testicle, and how we were told the surgery would last no more than 2 hours, and we were waiting for 2-1/2 hours! But I said some prayers, and no more than ten minutes went by before they called us into the recovery room. Owen wasn't there yet, but when they wheeled him in on a gurney with an oxygen mask, even though we knew he was okay, my heart stopped for a moment. It it just such an awful image. I have to say, though, this kid is a trooper. He was awake within minutes, pulled everything off him, including the blood pressure band and heart rate monitor, and was asking for water. He must have drank half a bottle, he was so thirsty. But he didn't throw up at all. Now he is happily playing upstairs with his grandmother.

When we took him in to the pre-op room, I thought for sure once he figured out what was going on he was going to have a fit. But the anesthesiologist was really easy-going, and he took to him right away. They put him on a gurney, and started to wheel him down the hall. I had already given him a kiss and a hug. Owen looked at Erik and said "Daddy," in that small-I-might-cry voice, but then Erik said "we'll see you in a little bit, Buddy," and Owen turned around and went along with them. He didn't even turn back to look. I saw a nurse say hello to him and he waved at her. I turned to Erik and said, "he is growing up so fast," because even three months ago, there is no way he would have gone in without kicking and screaming and crying. But, school has definitely helped.

I just hope that this helps him speak more clearly. It seems the one thing we all want for our kids is to speak clearly and be understood. Not a lot to ask for, right God??

Sad News From a Friend

I just got an e-mail today from one of the moms in our moms group. At the last meeting, she had brought a new friend of hers who was eight months pregnant and had just found out that their child had Down Syndrome. He was a boy who they had named Shawn. She had come to the meeting, and even though she seemed shell-shocked, she was so beautifully pregnant, and she kept touching her stomach, as if to remind herself that she was there because of "her little man" as she called her baby. I could only think how brave she was to be there before the birth of her child (although, to be honest, if you are braving the world of Down Syndrome, there is no better place to start than with the amazing group of moms that we have).

Today, the mom who had brought her sent an email saying that baby Shawn was born, and had died the same day, from pumonary hypertension. He lived for 30 minutes after being taken off the ventilator, and died in their arms.

First of all, I cannot even imagine what it's like to have your child die in your arms, and second of all, I cannot imagine the gaping hole this creates in your life. I mean, she was growing her child for nine months, and then he is born, and then he dies. What can that mean for her? How do you respond to that? I know that she has a daughter, who is around five or so, and how do you explain to your daughter that her little brother, that she probably anticipated for so long, is not going to come home with you? In fact, he's never coming home. He's not alive anymore. How does a baby go from being so warm and alive in the womb to dying in the world?

I always feared that. I always feared that while my child was so safe and protected in my womb, what would happen when they got out? What if they died? I'm sure we all have thought about it. I'm just so sad for this mom. She was so ready to accept her child with Down Syndrome, and to love him, and now she can do neither. Now she must look at a different picture: death. Now, she must readjust her expectations for every part of her life, and what happens next. Now, even though she knew her child had Down Syndrome, she was okay with that, and had begun to cope with it. But death? Who would have thought? I mean, for the most part, our kids do survive, and thrive.

But perhaps in the end, he was not meant for her and her family after all. Perhaps his lesson that he was teaching them, to accept him, was done, and his job was finished. Who knows. It's just said, because regardless, she would have taken her baby no matter what. Now, she only takes home a memory.

What is it about our kids that you just want to capture them exactly as they are every second? And then they keep growing, and you just want them to hold still, and stop, and be a baby for one more day. I thought that by working part-time I would have more than enough time at home with my kids, and that being able to go to the office would be a blessing for me. But it's not. I still want to stay home every day, and this weekend I am leaving to go to the Palm Springs Short Film Festival and I can't imagine how I am going to get through two days of not being with them. (I also wonder how Erik will do with them for an entire day through the night...).

Today, I got ready to go for work, and when the babysitter came, Owen ran to her and gave her a big hug, and then Tess looked up at her and gave her this warm small. Tess has the greatest smile. She smiles with her eyes. When she looks at you and her smile spreads slowly up her face, and her bluer-than-blue eyes light up, it makes me catch my breath. She is going to be some beauty. I have had so many people stop me and tell me how beautiful she is, and of course, I am biased. But they really mean it. Erik said to me the other day that she is "model beautiful". All I know is that I am so in love with both of my kids.

I watched Owen tonight as he leapt onto the couch, pulling himself up onto the pillows, then did somersaults across the couch, and finally lowered himself on the floor, where he proceeded to roll a couple of times on the rug, (all while wearing his cute little "Finding Nemo" underwear), and I was amazed at how lithe his body is. I was amazed at how much he can do with his muscles, and his balance and his knowledge of his place in his little world. All from a little man who we were led to believe would be nothing short of a village idiot, sitting in the middle of the floor, rocking. I can't wait for our kids to prove themselves, to mock the medical community with their ability to be someone who can excel, who can be a part of society, who can matter.

And the way he makes Tess laugh. Sometimes he throws toys at her head (yes, I'm trying to stop that), but Tess screams with laughter when he does. She thinks everything about him is funny. She lights up when he comes into the room and turns his attention to her: as do we all. He is our joy, our light, our reminder that nothing is ever as it seems.

A Changed Boy

I know I haven't posted about Owen and the whole school situation, so here is what is happened. As soon as I had the talk with his teacher, I went to the bookstore and bought the Supernanny's book (I really liked her show) and began reading it. By the end of the next day, my husband and I had decided to implement some of her disciplinary tactics, including getting down in his face and speaking to him in an authoritative voice, when he would throw something or start whining. And, guess what? It worked. We also gave him some responsibilities, like brushing his teeth, and putting his dish in the sink when he was done, and he has a little chart that he gets a star when he has done something right. We also have begun to praise him for being for just being a good boy, or for sitting at the dinner table well. In other words, we have been giving him more attention, but the right kind of attention, not just yelling at him to stop throwing his food, or the crayons, or his toys.

We began implementing this on Friday of last week, and that gave us three days of working with him before he returned to school. When I went to pick him up on Monday afternoon, the teacher came out and started telling me what a joy he had been in class and how excited she was about his attitude. She said he even colored without her having to hold his hand with the crayon in it. I was happy. Then, the next day, when I picked him up again, she told me that she is seeing progress with him and she is excited about teaching him. It was a whole different attitude, and apparently Owen is a different child in class from the previous week. I was so happy, and felt much better about Owen being in school. Yesterday, when I picked him up, they told me he actually helped pass out the nametags, and that when they asked what the homework assignment was, Owen answered "circle" which is what they were supposed to color. I was so proud of him. He is doing so well.

So this morning, after Owen went potty, I put him up on the sink and said, "we have to brush our teeth, Owen." As clear as day, he said, "I don't want to." I was floored. There was no speech issue, no rounding of the words, it was said exactly as you or I would say it. My husband heard it too. I had to laugh, but then I made him brush his teeth.

I'm actually a little excited to see what a difference the tubes will make in his ears. He has begun saying "Mommy," but with a very rounded sound, as if he heard the word while he was under water (which, technically, he is if he has fluid in his ears). So maybe things will be a little bit clearer. I know that I'm just so excited about the possibilities, and so excited about the change I have seen in him. It is true for our kids as well as typical kids, they still need discipline and boundaries.

Have a good weekend everyone.

Heavy Thoughts

August 15, 2006

The days seem to be flying by, and I can’t stop them. I can’t slow down the incessant march of time. I see Tess and Owen both growing up so fast, and I want another baby; not today, but someday. I feel as if I can’t put it to rest, not yet. Funny how I think of my parents and how they just kept having kids, one after the other, and they probably never stopped, I mean really stopped, and looked at us and marveled at us. I mean, here they had nine perfectly healthy, really robust kids, with very little medical problems. And yet, they probably didn’t get to spend much time appreciating the day to day miracles that human beings are. And especially babies. There is so much they are learning so fast. I didn’t see it in Owen as much as I am seeing it in Tess. There is no plateau with her. She is just progressing. And I love them both so much, but I am so much more fascinated by Tess. Number one because she’s a girl, and number two, because she’s so normal. I hate to use that word, but with Owen, it’s true, he is special. And with Tess, she’s so normal that I love watching her progress. I have to admit that there is something about Owen that has always scared me; as if he I don’t quite accept him and he understands that. There is something about him that seems as if he knows too much, as if he knows what I am really thinking. Sometimes I think he knows that if I had my choice, I did not want a child with Down Syndrome, and that makes me feel naked, as if my thoughts are no longer safe. He makes me afraid that he will turn against me one day, that he will confront me with my inability to accept his disability. I feel sometimes as if he is really sent by God, an angel if you will, to test me, to see if I can really hold up and handle it all. I love him so much, and sometimes I don’t think he accepts that. I think he really accepts Erik because he know Erik loves him regardless. And I envy that. I envy the ease between the two of them. A few months ago, I actually considered taking Tess home with me to Michigan and leaving Owen with Erik. Why didn’t I consider taking Owen home? Because I feel as if Tess is more okay with me, as if I haven’t hurt her yet. When I walk into the room, she lights up. When I leave the room, she gets upset. She wants to be with me. Owen never did, and that makes me sad. He always wanted to be with Erik, and I always thought that they had a better connection that we did. Was it because Erik stayed home with Owen, and I am home more with Tess? I don’t know. I just know that I can handle Tess, and there are days that I see Owen as a foreigner, that I can’t get through to him, that even though my body grew him, he is of another world, and not mine. I don’t own him.

I’ve been thinking a lot about death lately; and partially because I have been having my weird panic attacks. I am afraid to go anywhere, or to let Erik go, because I am afraid someone is going to die. I even lately have been afraid to be alone with the kids because I think maybe I will have a stroke or a heart attack and what will happen then? Will Owen sit by himself in the house, and will Tess be there as well? Will she fall over and not be able to get up and will Owen try to help her and hurt her? Will no one know that something is wrong for a long time? I think about how Owen doesn’t have the wherewithal to call someone, or to act. Will he ever learn? I know he is only three, but I hear these stories about kids who are two and call 911, or they unlock the door and go for help. Can I ever expect that from Owen?

I think about death, and I think about sudden death. I think about what will happen when my parents die, and when Erik’s parents die, because it will happen. But what if one of us die? Or what if one of our siblings die? Or our children? Someone who is not expected to die? What then? How do we handle it? How do we handle the curse of life: that death will happen but we do not know when. I get so scared thinking of myself, and Erik and my kids, then I include my family, and it makes me sad already. But I know that I must continue to live every day as I would, or there would be no point.

Some Advice Please...

I took Owen to school the other day, as usual, and asked his teacher if I could come in and meet the speech teacher. She said okay, and I came in with Tess. As I did, I spoke to the other teacher, who when Erik asked her how Owen was doing she said, "how is Owen doing? How is Owen doing? I'm not sure how to answer that question." So I asked Owen's teacher what she meant by that comment. Then, it all came out. The teacher took me aside and said she's been having a difficult time with Owen and she's not sure this is the right environment for him. And slowly, my faith in the school system begins to crumble.

She told me that Owen has some behavioral issues, especially when he doesn't want to do something he will throw it (i.e., when he doesn't want to color, he throws the crayons). Then she said he will do things to get attention, like get up and run for the door, standing by it while the rest of the class sits and does the lesson. She said she finally started ignoring him and he stopped doing it. But, he has a difficult time with scissors and she and the OT thinks he needs clinical OT (well, duh, don't we all...it's their system that said no), and that she doesn't see any progress with Owen. She told me that he is operating at the level of a 1-1/2 year old. But, she said when it is something he likes, like story time or songs, he does well. "He's very smart," she said, which made me feel happy, all while I am thinking he's going to get thrown out of preschool for being basically Erik's son: smart, but not wanting to do the work when it gets hard.

So we continued to talk, and she told me that we need to start setting limits with him at home and not helping him with things. She told me that we need to expect of Owen what we will expect of Tess. "Look, I'm not telling you how to be a parent, but if you feel sorry for him and you continue to do things for him, it will not benefit him." She's right, but of course, I don't know how to address these things. First of all, Owen has been usurped with a new baby who is breastfeeding, and seems permanently attached to me, and second of all, he is three years old and is just now entering the "terrible twos." So, how do I discipline him?

Oh, and to top it all off, I have realized that he hears very little of what we are saying. The reason I know this is that I have been testing him by saying things soft and loud. When I talk softer, he only catches the one word I say loudly and repeats it. If I say the whole sentence loudly, he repeats it all. Now, I wonder, how much of his acting out is frustration because he doesn't hear us and when he does say things, we can't understand him because he learned the words with fluid in his ears?

I feel as if I have already failed at being a parent. The last two days, I have been trying really hard to insist he do things, like use his fork, pull up his underwear, etc, but I feel as if it's all about me bossing him around and I don't feel as if I can have fun with him. It's as if I have become the general, and I know he knows that things are different.

I just don't know: do I discipline him as a 1-1/2 year old, or do I discipline him as a 3-year old? And to be honest, how the hell do I know the difference, since he is my first child? Lately I've been wishing that he was the second child, so that I already had experience in this whole arena. To top it all off, I wonder if he will ever grow and get beyond this level of understanding. I see so many kids who are 3 years old and they seem like these little grown up people. Will Owen ever be that way? Am I fooling myself into thinking he will be more than he is?

Childish Behavior

Saturday I took Owen and Tess to Beeman Park in Studio City. I thought I had it all figured out, and we would have this grand day at the park. Owen was so excited that we were going. He kept saying “ark” to emphasize that he knew where we were going. Then he kept saying “daddy,” since his dad always takes him to the park. We packed up and got ready to go. When we got there, I was relieved to see there weren’t very many cars there, since that meant it wasn’t that crowded. I hate when it’s crowded, because inevitably some of the kids gang up on the slides and the younger ones can’t use them. I know it’s just kids being kids, but I still hate it. So we got there and walked to the big slide, since Erik told me that Owen had been going down the big slide by himself. I put Tess in the stroller and watched as Owen walked over to the slide. There were two boys at the top of the slide, about 5 or 6 years old, and they both looked at Owen, who was at the bottom of the slide trying to climb up it and one of them said, “You’re a freak. You’re freaky looking.” Then he looked at the other kid and said, “doesn’t he look funny? Doesn’t he look like a freak?” I felt like someone punched me in the gut. Owen just looked at them, not understanding what they were saying (thank God!), and I just looked at both of them in fear: fear because I know that this is just the first instance of someone calling my son names, the first in a long life of him looking ‘different,’ of kids pointing that out. I picked Owen up from the bottom of the slide, looked at both of them and said, “did anyone tell you that you are ugly?” A little less sure of themselves now, the one boy said, “but he looks different.” I said, “oh yea, and you don’t think you look different? Maybe I should call you a freak.” I know I was being childish, because I knew better, but I couldn't help myself. I really wish I had a better comeback, to be honest, but I guess "ugly" is just as good.

I was pissed, and I was so hoping that their parents were nearby so I could walk up to them and say, “how old are your boys? Five? So it starts that young? So they are already bullies this young?” but I couldn’t find their parents. My stomach was in knots at this point, and all I wanted to do was kick the kids, and tell them that they would amount to nothing, because who gives them the right to tell my child that he looks like a freak? But I took a deep breath, and brought Owen up to the slide, and slid down with him. Then, he seemed to get a little more confidence, because next thing I know, he was climbing the slide by himself! By this time, the two boys had run off somewhere else, and all I could do was forge ahead. I wiped aside any emotional thoughts about the whole thing, and just concentrated on making sure Owen could play. At different times, older kids would come by and just want to use the slide, and I was just so taken aback at how rude they were, saying “can you move that little kid, he doesn’t belong on the big slide,” and then barreling on through as I was still trying to get him out of the way.

When Tess started crying, I was relieved. At least I had an excuse to leave the park. I had given Owen an hour of playing and even though he didn’t know anything was wrong, I was heartbroken. But I didn’t cry. Not until I was miles away from the park did my eyes water with tears and my throat hurt from trying to hold them back. I called Erik as I was leaving the park and told him what happened. I told him how I feel as if that park is full of rich kids who don’t know anything better, or how to behave. They are given everything, and they think they have every right to do anything they want without concern for anyone else. I know they are just kids, but I can see it already. Nobody said “excuse me,” nobody was polite, it was as if everything was there for their use only and if you were in the way, well, get out of the way. I told Erik that maybe it’s better that we don’t move to Studio City, maybe we are better off being in Hollywood, integrated with a different kind of society, maybe one that has been raised on manners. Is it my imagination, or am I finding that kids with too much money have no manners, and the Latino kids that go to school with Owen, who probably don’t have much, at least have respect and decency and manners? Do I really want to move to that neighborhood? It makes me wonder if Owen will be shunned by people because he is different. Will people treat him badly and call him a ‘freak’ the rest of his life? I told Erik that I want to have more kids just so they can protect him, and beat the shit out of kids like these when they treat Owen badly. And right now, I know I sound like a bitch, but I really do mean it. These kids may be 5 years old, but they are learning this from somewhere, and they are making it part of their personality. They probably could use a good spanking, at the very least.

And for all of you who read my blog, and have typical kids, please, do your child a favor and teach them to respect other people no matter what they look like. I know what a wonderful child Owen is, but when typical kids are mean, they learn it from somewhere, meaning their parents. If you are going to respond to my post and say that they are just being kids, then I hope I never meet your 'typical' kids, because they will grow up to be people that nobody will like.

I’m tired. I just want to forget what happened today, and I don’t really want to call anyone and talk about it, because I just can’t quite get my head around it all yet.

Finally Posting, Again

I feel as if it's been ages since I posted, although, in actuality, it's only be less than a week. So many things have been going on, and trying to get down to my computer after the kids are in bed is a major feat, especially since sometimes I don't get finished with everything else until 11 p.m. and then I know I'm going to have interrupted sleep so I quickly get into bed.

We had Owen's hearing checked again last week, and sure enough, he has fluid in his ears. His hearing is flat on one ear, and barely above flat in the other. I cringed as we sat in the soundproof booth and I clearly heard sounds that he didn't even acknowledge. And it's not that he was busy with anything else, there was nothing else to do but hear the sounds. It made me sad that he's been going through life the last few years without being able to hear certain sounds...what if he can't hear the birds singing in the morning? What if he couldn't hear Giles meow (our now gone cat)? And, more significantly, what if he is not hearing certain things I say to him, or songs I sang to him?

So, we will get tubes put in as soon as possible, and of course, the doctor's office that I previously spoke so fondly of (I'm being sarcastic here), still has not called me back to tell me what my next step is. I'm guessing they have filed my son's chart again...so I called Cedar-Sinai and spoke to the person who asked me to be on the parental advisory board and asked her for a referral. She told me she would get right back to me. Within an hour, she had three doctors' names, and I told her that I needed it done as soon as possible, not in three months. She told me that I could use another doctor's name who referred me, and get in as soon as possible. Now, I'm usually not one to cut in line, but I'm tired of being hung up because every doctor's office is overbooked, and/or their staff is incompetent. So, I am going to use my contacts and get it done with a doctor who comes highly recommended. I'm not the first to do it, and surely not the last.

Erik is gone for the weekend, so I have very little time to post. I'll write more later...