Reflections

I had such a wonderful day today. I took Owen and Tess to the zoo, and we walked around for about two hours. Owen was having such a good time being out and able to run around (well, his version of running). The rest of the day was just one that meandered, and I didn't want it to end. When my husband came home, he told me he was going to make dinner. He made this amazing dinner of steak and scallops. It was so divine. So I decided that we had to break out a really nice bottle of wine. I opened this bottle that he had given me for Christmas (we decided that we weren't going to spend money on gifts for each other for Christmas anymore because we really feel it's about the kids, and besides, we always donate to a charity), and it was amazing. See, both of us had bought each other a really nice bottle of red wine, and they both were sitting there. I decided there was no time like the present. It was a 1995 bottle of Italian wine that was good from start to finish. Each drop was like silk, and there was such a smooth finish.

Anyway, while we were having dinner in the dining room (and our son was watching The Wiggles for the 50th time...I know, we are such bad parents!), Erik asked me if I felt like I bonded easier with Tess than with Owen. I told him that I did, mainly because their births were so different. With Owen, he was whisked away to the NICU, and for two weeks I had to visit him there while he was hooked up to machines. With Tess, I was allowed to breastfeed her right after my surgery, and then she was in the room with me. And maybe because she didn't have a diagnosis, maybe because she was my second child and I was more prepared, and maybe because she was my daughter, I felt closer to her right away. I loved her instantly, and with Owen, it was a slower growing love. Not that I don't love him to death, and he is so special to me, but there were so many factors with him from the start: a birth resulting in C-section; in the NICU for two weeks and then the DS diagnosis. With Tess, she was okay from the start, and I was much more relaxed at being a mom. Plus, I had been trying for her for a lot longer than with Owen, and she followed a miscarriage loss. Why wouldn't I immediately love her when I felt like we had struggled much more to have her?

I think birth order definitely defines a child and defines how a parent perceives a child. She is my second, and most welcome. Owen was my first, and I was a little ambivalent about him, because we got pregnant right away and I didn't know what to expect. He just happened, and boy did he happen! So I think that circumstances change things.

Actually, I can't write anymore because I think I've had too much wine and I'm sleepy...

April Showers

It's almost April and the rain is here. It will be raining for the next day or so, and in a way, I'm glad. Living in LA, when almost every day is sunny, I always feel as if I have to take advantage of the nice weather and be outside, and then I feel guilty for staying inside (must be a throwback to my life in Michigan: you never let a nice day go by without taking advantage of it!). So, I feel as if it's okay to stay inside and ponder my life, and enjoy my kids, and just let my day unfold. I have been printing pictures of Tess and Owen, finally!, so that I can show both of them off. I am so proud of my two beautiful kids, and every day I am still so amazed that they are mine. I often wonder why they chose us, what made us so special? I was asked today by a friend how everything's going with two kids, and I think she expected me to start complaining, but I couldn't. Tess is sleeping through the night except for one feeding, usually around 4 a.m, and then she's back to sleep until about 8 a.m. She's such a good girl, and so sweet. She really doesn't complain much during the day, unless she's hungry, or her diapers need changing.

I have to digress here for one moment: I was in for a big surprise with Tess when I realized that she actually cries when her diaper is messy (as a typical child will do). My friends and I who have Down Syndrome babies all laughed when we realized that our child never complained when their diapers were dirty, in fact, sometimes I would realize I had let it go way too long before I changed Owen. Now, with a typical child, they actually cry when their diapers are dirty! Who knew?

So, together, I think I have two of the best babies in the world: they eat well, sleep well, don't complain much and aren't too fussy. Although, lately, Owen has begun to imitate the baby's cry because he thinks if he cries like her, then I will pick him up right away and pay attention to him. Boy, that kid is smart, I don't care what those scientists say about his mental ability!

Progress, at Last

I took Owen to speech today, his usual Monday routine. Lately, we have been doing something called "co-treat," where he works with both his speech therapist and an occupational therapist in a therapy gym. It's a great approach for him, since he has some sensory issues, to be able to try to get him to use his words while they 'play' with him in the gym. But the last three times I have been there with him he hasn't wanted to do anything (of course, it could be because he has been perpetually sick throughout the month of January and February). I have kept him from his speech therapy for two weeks now, just to let him get healthy again and not push him.

So today, after his initial shyness, he warmed up and began to play. His teacher, Jana, kept calling out to me every time he said a word that we had been working on. I could see a look of astonishment in her face when he said "up" instead of "pu" and then when he said, "swim," finishing the word (instead of dropping the 'm'). She was really impressed with him, and I could just see her mood go from good to overjoyed. Funnily enough, I had asked her last week when we did the one-on-one speech (he gets speech twice weekly), how does she not get frustrated. She said she does, but the reward is there. And today, I saw the reward. I saw Owen finish words, and say words, and I know that the repetition that I insist on at home was working. I was so frustrated with him the other day because he refused to say milk (he says "ilk"), he would only do the sign, and I wanted so badly for him to say the word, that I almost, almost tried to reprimand him by withholding the milk. But then I thought about how mean that was, and how a two-year-old has no idea why he can't have his milk.

But for me, it's so frustrating. I guess that is probably why I never became a speech teacher, because I wouldn't have the patience for it. And yet, and yet...ordinary people like me think we could never be the parent of a special needs child because we don't have the patience. God thought otherwise, because rather than being a speech teacher all week long, I am now a speech teacher for life: 24/7. So I will persist and drive away my impatience for as long as it takes. And just like many of my fellow parents of children with special needs, we don't question the calling, we just answer the call.

Fun at the Park

I decided to take Tess and Owen to the park yesterday; but didn't plan on the emotional toll it took on me. I had Tess in the baby Bjorn and Owen in the stroller, since we walked there from our soon to be new house. When we got there, I felt so out of place, and instantly thought of what a mistake I had made. See, Erik usually takes Owen to the park and they come back laughing and Erik tells me what a good time they had and all these kids Owen played with. Well, my husband is 6 ft, 7 inches, so of course he can lift Owen up to the highest monkey bars, and then he does the same for other kids, and they all end up having a good time. Here I am, with a baby papoosed to me, and Owen looking so longingly at the kids at the top of the big slide. He stood to the side and watched as they slid down, and he clapped for them. Then, when he wanted to climb up from the bottom (because that's all he could do), they kept telling him to get out of the way, because they wanted to slow down. It's as if everyone was in fast motion, and Owen was in slow motion. I wanted him to be able to climb up as fast as they did, like monkees, and slide down, or run through the sand to the swings. But instead, he sat down, and watched them through his little glasses, sifting sand through his hands. I wanted to cry.

So I took him over to the baby slide, where I could help him up to the top and then hold his hand while he slid down. He was fine with that, but again, every time some kid came back around they were too impatient to wait for him, so I had to take him off and let them go. I saw one mother looking at me like, "well, aren't you going to get your kid out of the way?" even though she clearly saw that he was a little slower than the other kids. It pissed me off. I felt like I was caught in some weird music box that was playing some off-key music that hurt my ears. Even when one mother I knew came over and said hello, I couldn't really carry on a conversation. I was sweating, and felt like I just had to get out of there.

And Owen didn't even protest when I said we had to go! He didn't fight like other kids, he didn't dig his heels in, or scamper away to another set of monkey bars. No, he went willingly with me, and it made me hate myself. All the way home, I just wanted to cry, but I didn't. Why do I want Owen to be more than he is? Why do I feel like I am lacking in some way because my child can't do what other kids do? And why do I care? Why do I want him to be just like any other child, because he is so special the way he is? Why can't I just accept him? I think it's because I can't really accept myself. I've always been such a perfectionist, and it's hard to see him okay with being just the way he is.

So today I took Tess for cranial sacral therapy, and Jennifer, the therapist, and I talked about what happened at the park. She asked me why I still couldn't accept the diagnosis that Owen has, and furthermore, why I was so fixated on it. She told me that the Maori people (see previous entries about Maori healers that I went to), believe that those who have a child with Down Syndrome are blessed. They are chosen. I thought about that all the way home from the session with her. If I lived in New Zealand with the Maoris, I would feel proud of myself and my child, proud of being chosen. Here, in America, I feel shamed, as if I did something wrong by having my child with a disability. Is that so bizarre? Perhaps I am just thinking the wrong way. Maybe I should begin thinking the way the Maoris do, and feel special, chosen. Maybe I should block out all the negative thinking that is so American (if you can't have perfect children, then why have them at all? After all, there are tests you can take to tell you if you child is imperfect, before they are even born.)

It's been a long couple of days and I'm tired. I hope that I can learn to redirect my thoughts to that I can erase some of this negativity, especially before my children catch wind of it.

The House of Sickness

We are all just getting over a nasty flu bug: Owen had it first, then I got it, and now Erik has it. Thank God Tess didn't get it, but I think because I am breastfeeding she is less likely to get a virus (or so they say). This is my last week on maternity leave and I have to spend part of it in bed! Not a fun thing. Owen was supposed to start his new class today, but we had to cancel because he still has diarrhea, and even though he is potty trained, I didn't want him to have an accident at school. He actually has been coming into our room at night to tell us he has to go potty, especially since he hates going number 2 in his diaper. I think maybe he is self-teaching how to potty train himself at night. We never have to worry about him during the day, it's only at night we have him in diapers. I love to play that card when I talk to other moms with typical boys, because I can see how irritated they get that Owen is already potty trained, when their child is not, because, of course, my son has Down Syndrome so everything should be delayed, right?

I've been really sad these past couple of days; mainly because this time home with both my babies is coming to an end. I have been so happy with the pregnancy and then the birth, and now having both kids to take care of, that I almost resent having to go back to work. Thank God I only have to go back part-time. I was thinking today how fast life is going by; how it's been 12 years since Erik and I met, and it will be our fifth year wedding anniversary this year. Where has the time gone? And what is to prevent it from slipping away even faster? I feel like one day I will just blink my eyes and my children will be grown, and I will be trying so hard to remember what they were like when they were babies: the fresh, newborn smell and the little boy dirt smell...If only they could bottle those smells.

The baby's crying, I've got to go.

So Sad to Hear...

About Dana Reeves. I can't believe she died. I really thought she would fight the cancer, and beat it. She seemed so strong, so upbeat about everything. I think what makes me the most sad is that her son is now alone in the world. He has lost both his parents. How much crueler can life get? I told Erik that is why I wanted to have more than one child, so one of them is not left alone in the world. But I suppose there are never any guarantees. What scares me is that I used to smoke, and she never smoked, and she still got lung cancer. It all comes down to nobody is exempt. I feel as if once we had a child with Down Syndrome, which we thought we were exempt from having anything but a typical, healthy child, that suddenly the floodgates were open. Suddenly, bad things happen to good people; people who have always played by the rules. That's how I feel about Dana Reeves. She played by the rules, she stood by her husband, she fought like hell. And still, that wasn't enough. It's so sad, and it scares me, because I wonder what is ahead for me and my family. I feel as if every time I turn around, there is another person I know who has some form of cancer. And it's not necessarily the elderly, either. It's happening to more and more people, younger and younger. I suppose I just have to really go back to believing in fate, believing that things happen for a reason. But I'm losing my faith and I'm not sure quite how to get it back.