Red monster returns

This morning Little T's teacher called and said that Little T's left arm was red swollen and felt hot. This teacher is always matter of fact and patient and delivered this news calmly but she called first thing.

I called Hematology and told his doctor the news. I said I'd bring him in if the teacher's description was correct. I hoped anyway that somehow it was Opposite day and the teacher was exaggerating. But no Little T had hot sausage arm. And was fussy in that way he has when arm hurts.

The Hemo doctor wanted to rule out a fracture and so his arm was x-rayed. I have never hoped for a fracture before but I did and knew it was futile. Bone structure is fine. Swelling looks like blood vessels. A pause as the doctor tries to hope too.

The swelling and redness looks all too horribly familiar. The start of Kasabach Merritt Syndrome again. It's too early to say for sure and nothing is being done. Well okay another MRA which means another round of anesthesia. Seeing him go under is a terror that never dulls.

But back to the Hemo clinic where now Little T can play the Ninetendo. Kinda. Hermione was there and was helpful. I want to whine that Hermione was supposed to make things better. My magical companion.

I said at the Hemo clinic "I have a bad feeling about this." I still do. I want desperately to be wrong...for once.

We take photos of his left arm. Another familiar thing which we will go back to doing everyday. New twist is now Little T hates it and protests.

I want to shout "Can't the kid grow and not have this red monster grow too?" I want to cry but I don't because that would confirm my worst fears.

So let's have it be Opposite Day where I'm wrong and everything will be just fine. I hold on to that hope.

And new thing. We will now all go for walk with Hermione. Maybe that will be the spell that will break the red monster's hold. His arm grows slightly cooler and I hope and then heats up again. Walk to cool down. A walking spell. A walking meditation. It's all I have new. That and cod liver oil imported from Norway which he asked for yesterday. It must be new and different. Not the same.

Laptop cured, but I'm sick and nervous about leaving the kids

I have a cold virus.

I am putting together my packing list for Team Training for Canine Companions for Independence (CCI) which is just 10 days away.

Yesterday I photocopied the schedule for the entire 2 weeks, my dorm assignments and all the directions to various places around the CCI campus.

Don't get me wrong. C's a wonderful father, but he's a WAW (Work at Work) dad. But WOW is how folks often view dads that do anything with their kids. I'm nervous, because I'm basically leaving the kids under his care for 13 days and I feel he has NO idea about what it's like to look after the kids full-time. He's gone camping with them and several other families for a couple weekends, but the village helps out.

Ironically I would feel better if he was a bit more nervous. Instead he says things "I think we'll be fine." I hope he is nervous, but just doesn't want me to worry.

Has Harry Potter lost its appeal or I have gotten too serious?

Special K has a high tolerance for fantasy violence and death. She used to play World of Warcraft and now she plays Guild Wars with her dad because the online community aspect is limited only to certain areas. She has a low tolerance for real violence and death. She draws a sharp distinction between the two. Whoever said that kids don't understand the difference has not met my child. Classic fairytales are also full of violence and death. Some children are frightened by them and others are not.

I guess how far we'll let her read will depend on how "real" she thinks Harry Potter and his crew are. I'll ask her after the first book. So far she says she "doesn't get" Harry Potter so I guess Harry Potter is still a little above her.

Meanwhile I found it hard to get into reading the seventh book. I skipped to the end and read the last few pages. Very bad I know. For a few days it sat there in all its largeness. I know Harry Potter has big problems but I feel like I have several Voldemorts to deal with and I'm on quest to destroy them before they destroy my son's chance at a good life. Okay overly dramatic but isn't that what the series is all about?

Now I've started reading it and I find it interesting but it doesn't have the same 'must it read' it feel the I had for the other books. Has Harry Potter lost its appeal or am I have gotten too serious? Or is this book just a bit too grim? What appeals to you about Harry Potter? Do you think the last book was as good as the rest? Which is your favorite Harry Potter book? Why do you read seven books of such huge length?

Crossposted to Silicon Valley Moms Blog on 8/17

Blogging Against Disabilism Day: Are you or have you ever been insane?

A parent on my Special needs list sent a story about Depression in Mothers with Autism. Perhaps some of these mothers are truly depressed. But depression would make it very difficult to care for a child with autism. Depression is a mental illness -- an incorrect biochemical neurological response to stresses in the environment.

More than once, a friend who suffers from depression has said I'm depressed about my special needs son. I am not...anymore. I get sad sometimes. That is different. My life is stressful by any objective measure. And I think it is reasonable to be upset when you are the parent of a child has a debilitating disability or deal with one yourself.

Unfortunately I've also been medically depressed twice in my life. I had post-partum depression after the birth of both my kids.

I can't speak for anyone else, but depression feels different from grief or sadness. When I was depressed,I actually felt very little except hopeless. My post-partum depression was actually worse the first time after my healthy daughter was born and lasted several months. I felt I was the worst mother ever, not only disabled, but also just completely incompetent. At any moment, the state would discover I was "an unfit mother" and take my daughter away. If I did something right, it was only because of some book or someone else. If I did something wrong, it was the end of the world. I can see how for a few mothers who go for a long time without help, the end of the world might mean killing their own children. They are insane, but post-partum depression is a form of mental illness.

With my son, who was born so sick, being depressed meant feeling he was going to die (could be true) and I had killed him through my inaction (insane). Unlike with my daughter my situation was so dire that it was obvious I needed help.

I think this is the first time I have written this in public. The day my son was born, I did seriously consider dying. Not actual suicide. Just giving up. My son's birth had been very difficult and I was incredibly weak, so I felt I could just let go. But within hours after my son was born, a nurse whose baby had died came to talk to me. She helped me realized that a) I might just survive the death of my son and b) I still had a daughter who needed me. She didn't break the insanity --the feeling that I was completely to blame for everything wrong with my son took a while to fade. She did get me to promise to talk. She told me I was not a bad person to feel the way I did. That I didn't need to be ashamed. I started talking with her and then my husband, and eventually when I had time, I talked to a therapist. Day by day, issue by issue, I started to feel less to blame and eventually I could separate what was under my control and what wasn't.

I still feel grief or sad when my son is very sick, or something else
bad happens like my son gets denied a service or he or I suffers a setback. But depressed, no. I don't just sit there and stare at a wall. I cry and then I do something.

My reactions are sane as can be expected, given insane circumstances. My mothering body was designed to rally to protect my children from predators and try to treat them when they're sick for a few days. It doesn't cope terribly well with continued prolonged almost dying (fortunately that phase seems behind us), a infancy that lasted a year and some aspects of babyhood that are still ongoing at 2.5 years old. This is a wonderful and dreadful aspect of modern medicine. I have to laugh a little at those who claim the body can heal itself from all things. Left to his own device, or heck even left in a third world country, my son would have died at birth. Terribly sad, some might say depressing in the nonmedical sense, but it is the truth. Clinical depression is about untruth.

And no, I don't always feel things will get better. Sometimes this is in fact a rational
response. The doctors tell me some things will never get better. Depending on the day, I believe them or don't. But even in my darkest days, I feel small fleeting moments of happiness. I walk outside in the sunshine. My family hugs me. I feel love. I get frustrated. Grief, even grief that lasts for a long time allows for fleeting moments of other feelings. Grief is harder than not feeling at all and inaction which characterized depression for me. I struggle every day to try to make things better.

And here's where I find our current approach to mental illness to be so twisted. Our current approach is focused on if people "pose a threat to self or others." That is our requirement for locking people up. That makes sense to me. But how about the majority who are mentally ill, but not a threat i.e. need outpatient therapy? The first time when my post-partum depression was worse and lasted a lot longer, I posed no threat to anyone. Months went by and I sufferedin silence.

A lot of hand wringing over Vtech is about how Cho didn't get help. He did get help. He was seen by an outpatient facility who let him go "because he didn't pose a threat to others."

Sadly I think the current atmosphere makes it LESS likely, folks will get help for mental illness. People are watched closely for signs that they might "be a threat." Meanwhile outpatient mental health services are cut all the time. Most medical insurance drastically limit mental health benefits.

Unfortunately it's much harder to tell if someone is a threat than if someone is mentally ill. Strangely as my psychiatrist dad will tell you, becoming a mass murderer requires a certain amount of sanity, Cho did a lot of preplanning. He even sent off a tape before his second murder spree. In our society, premeditation means that the person is sane to stand trial. It requires an utter disregard of other people's lives to the point where you think you have the right to kill them. I'm not sure if that is sane or not, and it may well be associated with other forms of insanity, but it is not depression or schizophrenia or any of the other common forms of mental illness.

Yes, a few moms with post-partum depression actually kill their own kids. More likely are the moms who have fleeting thoughts about killing their own kids along with themselves and then feel awful about it, and the spiral down continues. And I know a call to watch out for moms with post-partum depression, because they might kill their kids would be so effective at getting moms to speak up about it. NOT.

Sadly the usual face of mental illness is not Cho. The face of mental illness is a homeless person talking to the air. Many homeless people have mental illnesses. A person who won't get out of bed for days because "there is no point". A mom who says "I can't love my baby." A mom who feels "I am the world's worst mother" and not for a moment as we all do sometimes, but for days and weeks. A person who feels pleasure in nothing. A person who honestly believes that there are strange faces peering out at from doorknobs and laughing. A person who feels that everyone is plotting against them. A person who is too scared of open spaces to leave the house. With the current stigma against mental illness, many are too ashamed to admit they have a problem until things get very bad indeed.

I have only experienced mental illness for a brief time and I was ashamed about it. I still feel a bit embarrassed to admit that I ever had this disability. And yet having post-partum depression was no more my fault than my movement disorder is. Both involve brain issues. With post-partum depression my brain just got scrambled due to hormones.

For me, a large part of that shame comes from "I'm not one of those who pose a threat." It's like admitting to having leftist tendencies while the McCarthy trials against Communism were going on. The huge association between mental illness and "being a threat". I would like to say that I feel this is totally and utterly wrong for most people and especially for those who receive the proper treatment. I'm not a doctor, but from what I read, it does not match the current medical understanding of mental illness either.

But yes, twice I've been truly insane. My strong beliefs about the world, my children, and myself were in direct opposition to reality. My insanity was only temporary, and I'm so grateful. Are you or have you ever been insane too?

Will be crossposted to Silicon Valley Moms Blog

Wow I got an award

Thanks Susan Ettinger! Susan of the Family Room gave me a Thinking Blogger award for my post on Silicon Valley Moms blog called Mommy Wars miss the point I link it because the comments are interesting.

Mother worry

Yesterday was the kind of wonderful day I'd always hoped to have when I decided to have children. Now that's not to say that these days are so remarkable. The amazing thing I find about both my children is that they are essentially happy.

I want to say despite the medical issues that rise and fall in our lives, but that's my deal. They seem a lot less affected in general. Special K says in a matter of fact voice "Well sometimes [Little T] goes to the hospital and sometime he doesn't."

Right now I'm not living under the constant shadow of life-threatening disease, but it's left its mark. I was never a worrier before, but now I've become one. When he gets a fever, I worry that he will have to go to the hospital. Okay, so far we're only one fever not going to the hospital versus four fevers landing him in the hospital. But when he got a fever on Friday night, I didn't take him to the ER despite the hemo doctor's recommendation, because he started playing. The ER is so germy. It's a great place if you're coding, not good if you're immunocompromised. Then he got better. So I guess I'm not so paranoid in that respect.

Today he has a rash all over his back and my first instinct was to worry and call the doctor. His doctor was on vacation and the other doctor who has seen him wasn't available today. Then I thought "it's just a rash." He doesn't have a fever. Sure he's whiney. But he was sitting around waiting for me. He hates waiting.

I used to be essentially happy also. And yesterday left me feeling more like I could be again. I see a long tunnel and happiness at the end. But I could never be happy worrying that my son's life was in danger. And I was miserable for months.

To be honest, I'm not sure if I believe that he won't be in the hospital again. No one can tell me if Kasabach Merritt will return or not. They guess it won't, but they've been wrong before. My son's tumor is particularly aggressive. I get different answers about how much the drugs affect his immune system and how vulnerable he is to the nasty secondary infections that landed him in the hospital before.

I wrote this because sometimes I feel this pressure to be happy, to be in my old life. Writing this all out helped me see it's just part of where we are right now. And it's okay. I do really enjoy the joyful moments with my children, but then worry returns.

I guess I'll live with worry a little longer. My worry level has definitely gone down too. I used to go up to code blue and actually take him to the doctor or ER and find out that yes indeed he was really really sick. Now I just worry a bit he might be seriously ill, but don't actually take him anywhere. This is in fact an improvement. As the months go by, I hope my mother threat level will go down further.

The Boob Tube

For a few years of my life, the boob tube was literally the boob tube as it was the only thing I could do while breastfeeding. Yeah breastfeeding is supposed to be this magical bonding thing between mother and child and it is for the first five minutes. However if you're fortunate and your child is healthy, your child then breastfeeds for another 15-20 minutes. There's only so long even the most adoring mother can stare at her baby's guzzling mouth and the back of her baby's head. My babies never let me read, so I turned to tv. Now I turn to tv at the end of a long day. I have talked to C. I'm tired. My brain is full. I'm still too keyed up to sleep. Here's six shows I watch.

• Veronica Mars - If you're not watching this show, and love intelligent drama, you should be. It's hard to find strong female characters anywhere on the tv landscape. Well, here you have one in the title character. Film noir meets California high school drama. Veronica is a tiny blond bombshell who's not afraid to use her sex appeal or her smarts to solve mysteries or deal with jerks in high school. The disturbing and intricate mysteries involve murders embroiled with local town politics and teen angst. Veronica has a quirky offbeat sarcastic humour and so does the show. My main beef with the show is there are hardly any Asian Americans in Veronica's town, supposedly a rich town in Southern California, surely a mecca for certain types of Asian Americans. And pretty silly of the producers to miss a key demographic.
  
  
• Six Feet Under (on DVD) - The only show I know that features a gay couple like any other couple with their problems and heartwarming moments, not as a joke or the stereotype. I fell further in love with the show when it had an episode with Susie Bright. Some folks criticize the show, because at the beginning of the show, someone always dies, sometimes in silly ways, sometimes banal, sometimes shocking. The writers research and draw these vignettes from actual deaths. People die every minute and in all sorts of ways. Life doesn't stop being weird and funny because death is involved. I discovered this show a year ago and I found myself watching this show when things were really bad. I found it comforting not in a schmaltzy tv sort of way, but because it's the only show I've seen that understands grief. How grief can make you laugh inappropriately, trust inappropriately. How you can go along seeming fine, but grief catches up with you later. It's not a linear process. This show even has an Asian character. Woo hoo!
  
  
• House - The medical details on this show don't bear too close scrutiny, at least not the one time I looked, so pretend they don't matter. They're all supposed to be medical conundrums. I just accept them as given. Anyway it's not about that. It's about House, a misanthrope doctor who professes to hate patients but loves a good puzzle. He has one friend, an oncologist, but otherwise browbeats and insults the rest of his team who stay with him, because he's brilliant and right most of the time. He's so mean and unhappy, because he hates himself and self medicates with drugs. Because of his drug addiction, other doctors missed the fact that House's own leg had muscle death and he now walks with a pronounced limp. With a bad actor, this could be an awful show, but Hugh Laurie pulls it off. And you're sucked in wondering watching him take slow halting steps between self destruction and saving himself.
  
  
• Jeeves and Wooster - Hugh Laurie used to play his complete opposite, Bertie Wooster, a English upper class twit with lots of friends who got in silly meaningless misunderstandings. Also utterly captivating and so is his very proper and very clever butler Jeeves who quotes Pope and gets Wooster and his friends out of their mad cap schemes with quiet efficiency. He also brews a good cup of tea and makes a wonderful cocktail for a hangover. Who wouldn't want a Jeeves in their life? Never mind he's a servant. In this show he loves it.
  
  
• Daily Show with Jon Stewart - If you don't know about this show, I don't know which rock you've been hiding under.
  
  
• The Simpsons - Somehow this show manages to be funny even how after all these years. Occasionally it misses, but I have to say I laugh almost every episode.
  

There's more, but my mind wandered off. I do like my tv, but in small doses unless I'm sick or I really really need to escape from real life.

Little T has severe nerve damage, roar!

Sorry I haven't posted for a few days. My heart broke again. I went to Little T's Hand apt on Wednesday and the report said in black and white. "These electrodiagnostic studies provide evidence of severe loss of sensory and motor axons in multiple nerves in the left arm."

This doesn't actually change anything. I mean the boy's arm barely moves. And in fact since the report the boy now slightly twists his arm inward. But somehow I let myself believe what the EMG doctor told me. Why this stupid doctor (not his hand doctor BTW who's really wonderful) told me this. I dunno. I believed him, because I'm his mother and I believe in my boy. But believing he had moderate damage for a week and then hearing he had severe loss was crushing to me. I feel horribly betrayed and sad.

On the day Little T was born, they told me they would have to cut off his left arm to save his life and I honestly thought if they did so, he would die. Now I would have just refused the operation. That day I accepted him as he was, a one-armed Popeye. His arm no longer resembles Popeye's, but he's still a fighter. I think his arm will do more than what it can do now, which is mostly hanging by his side, but I'm not sure what that means. Whether that just means he pushes it around or not and makes it grasp and ungrasp things with his right hand. I'll leave that up to him and what develops.

For Little T, life is fun and a big happy game, but Little T is not a laid-back kid. He's always pushing himself. He's aggressive. He roars. When he falls down, he literally gets back up and tries again. So that means that as his mother, I can't give up on his arm whatever the numbers say, because he wouldn't. He's just too young to understand what his arm can do.

But I can't live in fantasy moderate nerve damage land either. It's a very hard thing. The past couple days I've cried several times. I think not just about his arm. But because this also feels safe to cry about. I wrote in my book that I rarely cried when he was seriously ill, because crying meant facing his death and that I couldn't bear. I think that's really what I'm still grieving.

Grieving not being able to fix things. I never dreamed I'd have the perfect baby, but I think I did dream I could be the perfect mother and not make mistakes, especially not mistakes with scary names and consequences like brachioplexus. We still don't know if that's what he has. We may never know. I will always know he should have been born via c-section.

And being Little T's mom, well being mom to any child, means that you have to leave your heart wide open to all possibilities, to dream and strive for your child's potential, while looking at him here now and loving and working with what he can do today. Little T has so many unknowns, more than most, so I'm resigned to more heartbreak. I read these books about special needs kids that don't match me. I never feel sad about him. And when I go to the hospital, I always see kids that look so much worse than he is and feel so grateful for his vitality, his zest for life, how incredibly charming he is. I always feel joyful to have him around when he's happy which is most of the time. And like any mother when he's cross sometimes I wish I could run away. Rather I'm well aware of the challenges of being disabled in an ableist world. I want him to be happy with who he is. I want to make sure I've done everything I can to help him accept himself, to live up to his full potential and to make his path easier. There's still a lot of soft biogtry of low expectation for disabled people. It's changing, but I still encounter it from time to time.

But today I woke up still feeling sad but lighter. I don't think about the past much except when the present reminds me of it. I used to blame myself for that. Why do I think about these depressing things when I want to forget them? But a couple weeks ago C asked me "What is your brain trying to tell you?" Oh! Light bulb moment! My subconscious is trying to tell me a life lesson from my past.

My past also tells me we got the most crucial bits of that bits of that day right. I saved his life. I refused pitocin which would have killed him. He didn't get surgery which would have killed him. He's still here by some miracle. I felt so all alone that day. I stared at the ceiling. I had never felt so raw and broken in my life. I wasn't sure if I wanted to live. Then a light - a nurse whose baby had died came to talk to me. She was still alive and actually working. And I realised that even if the unthinkable happened, I might actually be okay and I started to get back up.

Today I feel less alone. I have C now. We have figured out how to support each other in the ways we need. I also know other parents who had kids with life threatening issues with whom I've talked with honestly. I have close friends without kids who will listen, though of course none of them really understand. I have some kind parents with kids who will help babysit Special K when my nanny isn't available and I need help. But I still find myself crying with Special K and Little T in horrible pain not sure what to do. I didn't call any friends the past couple days. I didn't know what to say. I dunno if there's anything to say.

C says that "a support system doesn't make this stuff any easier, it just makes it so you don't fall off the deep end." I guess that's true. I didn't fall off the deep end. And I did just figure out like 90 seconds ago that maybe I should let my friends know beforehand when we're doing these upsetting tests and appointments, so they can call me and ask what's up. I tend to just avoid thinking about them until at the last minute, because I know they'll be bad news. But it'd prolly be better for my mental health. Our next upsetting appointment will be our meeting with the brachioplexus doctor on the afternoon of 8/7.

Anyway I'm still sad, but I also wanted you to know I've started to roar again. I leave you with

Special K's first reading lesson

Special K has asked me several times to learn to read. Before we started, she could already read several words like "ok", "no", "on" and "Deeprun Tram".

As soon as the reading books arrived, Special K wanted to read them. She read the first two books of the first set of the Bob Books. Together we read the first book of the first set of Dora Phonics Together we read the first Dora book and book 9 of the Bob books. The Dora books are way too advanced for the absolute beginning reader, but she really loves Dora.

I taught my sister to read almost twenty years ago, and the Bob books are a lot easier and more interesting than the Peter and Jane books we read. However Special and I started to have the same frustrating problem where phonics didn't make sense to Special K. They never made much sense to my sister either. Sure Special K knows every letter sound and can sound out C A T, but to get from there to the word 'cat' is a huge leap.

In reality I don't read that way and my mom tells the story of how she tried to teach me to read. "r-a-t, what's that word?" I replied brightly "Mouse!" I remember a teacher taught me to read in preschool, but I forget quite how.

I've memorized thousands of words and word chunks. On the rare occasion I encounter an unfamilar word, I never sound out the word letter by letter, I process it as a chunks. With my sister, phonics only made sense after she had learned to read as tool to learn harder compound words, not as a tool for learning to read.

I was beginning to think the same might be true for my daughter, but the Bob books are much more clever than the books twenty years ago. They have words like Mac, and Mat and rhyming words like bags and rags. After she read bags, I told her rags was very similar to bags except it started with r, and she got it.

I've heard of some other movement like whole language or some such. If I had more time and patience, I might look it up. I took a brief look at this DISTAR book, and to be honest, it looked so tedious and difficult for the poor parent, not to mention the child. You had to move your hand in a certain way. A total nonstarter for a person with a movement disorder. And each lesson didn't seem to tell a story. What's the point in reading to a 4-year-old if you can't read a story? But then I'm afraid most reading theories make me want to beat my head against a wall. "Did you bother to make it fun and exciting?" as well as fit with your theory.

But if you have any fun and exciting recommendations, please let me know.

New mom to my emerging book

I have a new title for my first non-fiction book. It has sat comfortably for over a week with me. I think this one will stick, at least until the publisher gets a hold of it.

On Saturday morning I met with a mom, a friend from my Haas days about one of the most difficult chapters of my book. When I told another mom I was writing this chapter, she gave me a horrified look and said with a pregnant pause "That's a weighty topic.". Frankly I agree, but it belongs in the book. My friend thought overall it had the right tone, style and content. Such relief.

I feel like a new mom to this book. I feel like the book chose me and it's not an easy child. It keeps me up at night. It makes me cry. It makes me relive a year I'd rather forget. Sometimes I feel just as bewildered as any new mom. But at last, with some helpful comments, the book proposal has passed from its ugly and awkward newborn stage to a more polished adult form.

As a new mom at times I knew I was winging it and I feared the authorities would find out this gimp had this baby girl and come take her away. I don't feel nearly as scared and insecure as I did in the first few weeks of motherhood. It is after all just a book. And I also know a lot more about writing than I did about motherhood. But I've also learned that just admitting it out loud helps a lot.

On Saturday I was pleasantly surprised. I half expected the mom to tell me 'bad things'. Instead she said it was really good. I'm competent. I don't suck. I accomplished something really difficult.

I still have a long way until a complete book, but amazingly I'm a third of the way there. Part of me knows how this happened since I sat there pounding away on the keyboard, and gods know the revisions have been painful, but part of me is as amazed as any mom. "Look at how it's grown!" I exclaim.

Two's Enough, Three's a Crowd of Kids

I spent Saturday and Sunday morning alone with Little T. C and Special K went on their annual camping trip with some other families from our playgroup. We all had a lovely mellow time. Little T basked in all the mommy attention and smiled and laughed most of the time. Even at bedtime, his fussiest time he didn't cry, too bemused at the novelty of having his mommy put him to bed. C and Special K hung out and played with all the other families.

I really enjoy being able to spend time alone separately with each child. I spend time with Special K every day when Little T takes his nap and Little T gets his time when Special K goes to preschool. I like how C and I can take one child or take both children.

I'd been feeling vaguely wistful that a friend of mine was pregnant with her third child. Before we had any kids, C and I had originally planned to have three children. Then after Special K was born, I wanted one and C talked me into two. But the mystery third beckoned. I wondered what a third would look like. I still thought having a third seemed crazy with all Little T's medical needs, but that reason always seems lame. Not to have a child because your second child is so demanding is not a satisfying reason. It doesn't give me the sense of completeness I need to say "We're done."

But this weekend gave me a sense of peace. I love my family the way it is. We have four different but compatible personalities. Fortunately C and my complementary personalities combined to produce siblings that not only get along for the most part, but seem to genuinely like each other. The mystery third's personality could shake things up. Three or five's an odd number that leaves one out and we're definitely not having four. So we're done. As we say at Bryn Mawr, "done is good." Are you happy with the number of kids you have now? Why or why not?

Evil mom doomed ducklings

Okay now I know I'm an bad mom, because this series of doomed ducklings made me laugh out. I think mostly because I think it's a twisted metaphor for motherhood. You try to get your ducklings safely across the street. You're looking for traffic and all kinds of other bad things, but you miss the grating, because it doesn't really affect you. Then the world thinks you're bad or evil, because your ducklings fall down the drain.

Bad mom bad knee

Last night I thought I had done something for sure that marked me as a bad mom and would mean my daughter would need therapy when she grew up. Through my stupidity I scuttled our trip to Disneyland this weekend.

Ironically her desire to play Disney games began the whole debacle. The laptop was on the coffee table and she needed help to get the game started. I knelt down to help her. My knee discovered not soft carpet, but a sharp pointing object that stabbed my kneecap. I slipped off this object and onto my daughter's foot, bruising her little toe. In one fell swoop I injured us both. While my injury appears to be mild, walking the few blocks downtown last night made it swell. I'm not up for the marathon amount of walking Disneyland entails. C could have gone in my stead, but sadly we discovered Special K's foot was injured too when she refused to walk downtown. C carried her on his shoulders. And yeah my daughter is more sensible than me since I should NOT have walked downtown last night.

Last night as I lay upstairs putting ice on my throbbing knee, I cursed my stupidity and my clumsiness. Special K has been asking about going to Disneyland for weeks. I wondered if Special K would ever forgive me. I wondered how I'd make it up to her.

But I have the sweetest most forgiving daughter. When she came into our room this morning, she gave me a big hug. She said "It's fine to go to Disneyland later." And I haven't heard a peep about going to Disneyland since then. She seems content to play Disney games on the computer instead. We're going to make the attempt again sometime in July.

Special K singing star

Special K sang today at her school assembly, such a singing star. She sang all the words and did all the motions of all the songs. Adoring parents videoed her performance. Last year she huddled on the mat, afraid of the crowd.

When I had to leave to go home for Little T's babysitter (C was staying with her at preschool), I asked her for a hug. She gave me a huge hug with her arms and legs and a big kiss too. So wonderful.

As I was driving home, I felt sad both that my girl was growing up and that I hadn't really adored her fully in a while, at least not with my full rapt attention. I'd been feeling tired, or focusing on Little T and his numerous needs, talking to C, or preoccupied with my book. In response she'd been trying to reach out to me, sometimes in positive ways, like trying to pretend we're Wonder Pets, and sometimes in negative ways by whining. And she deserves my full rapt attention just as much as Little T or C. I need to set up special time with her. I did before, but not on a consistent basis. We both really enjoyed it and it was really good for both of us.

Trader Joe's

I slide my socked feet into my shoes with a soft whick. Little T stops playing with the respite care worker "aaah?" He scoots on his butt, swinging his left arm, and knuckling his right hand, full speed ahead to his traiterous mother. "Aaah" I manage to tie both shoes before he reaches me, but not to stand up before he pulls up on me. He clings to my shirt and pulls "Gah" he says firmly. His meaning and motion very clear "Take me with you." I sigh and hug him tight and say softly, "I'm sorry sweetie. I can't." He arches his back, his face crumples into a ball of misery, and he bursts into tears. He doesn't understand much about the effects of steroids, but he does understand this. He's being left behind. Again. He wails at me and pulls at my shirt again. I hug him and tell him "I wish I could take you with me." and I remember other trips to Trader Joe's.

Back then I used to curse the fact that Trader Joe's carts only held one child. Little T rode in the front. I bought a nursing pillow that also converted to a shopping cart seat cover. Before Little T, I regarded such things as rather a joke -- a marketing ploy for overprotective parents. Special K rode without one, ate dirt and sand. But now Little T rode with a shopping cart seat cover to protect his medically fragile self from all the germs. Special K rode in the back in the main shopping cart. I piled the groceries around her, burying her in frozen peas, bread, milk, and Weetabix. She'd laugh and hold up a chocolate bar. Little T would laugh too. He'd try to grab it from her, but he was too far away. They'd giggle and giggle. Then Special K would hold up a tin of tomato sauce. This game continued until Special K was swimming in a sea of produce.

We'd reach the checkout and the checker would often stare. Some would comment on our strange arrangement "Looks like she's buried" "Is she one of the groceries?" One was almost afraid to reach in the cart. Special K would helpfully dump the food onto the counter. "I'll help!" she'd say proudly. She'd pretend to swipe the groceries on the laser.

Now our shopping trips to Trader Joe's are much more sedate. Special K tried sitting in the cart a few times without Little T, but it wasn't the same. Now she sits in the front. Our groceries stack neatly in the cart. Nobody giggles. Nobody comments. I used to count the days until Little T would be off steroids, and we could all shop at Trader Joe's again. Special K did too. She used to tell me "I want to go to Trader Joe's with [Little T]." But now she doesn't anymore. I don't even know if Little T remembers anymore. But I do and whenever Little T tugs on my shirt before I go to Trader Joe's, I feel sad.

Booster seat dilemma

Little T has finally grown out of his infant car seat. C and I debated whether to graduate Special K to a booster seat. She weighs just over 30lb and is about 38 inches tall, so she just about qualifies for the Britax Parkway. It costs $89 while a car seat costs $230. Special K has more freedom to move around in a booster seat. However a booster seat is easier to install wrong and can be less safe.

In the end we decided to buy the booster seat and use it as the spare car seat. Our nanny uses this seat to take Special K to gym and for occasional other trips. Right now our spare car seat is a Britax Roundabout. We'll put Little T in the Roundabout. By the time Little T grows out of the Roundabout, we should be comfortable having Special K in a booster seat full-time.

It amazes me how stressed out I got making this decision. I'm the parent banned from a group of mothers for letting Special K eat sand. Yet I got scared when I read sites that "Children should be get in harness restraints as long as possible." and "children under 4 should not ride in booster seats." Also two years ago our car was rear-ended by two cars in a car pileup. Special K was just under 1. WS and I both had back injuries that required treatment while Special K escaped unharmed.

Little T at 15 months

Little T platelets continue their slow climb upwards now to 100 and his fibrogen was 130.

His weight jumped up to 9531. I think he gained a lot of water, thanks to the steroids. His cheeks are as round as a chipmunk's, and his arms and legs seem pudgy, but are actually more puffy when you take a closer look. He's so short at 27" and he doesn't walk, so he can be mistaken for a younger baby. I sometimes get weird looks when I say how old he is. He turned 15 months yesterday.

Little T inspires me to keep plugging away at my book. I'm primarily revising the first three chapters, and I've had little time to myself this week due to various medical apts, and Special K's cough, so I've fallen behind on my quota. I also haven't had good sleep for two nights in a row. Last night Special K lay in our bed coughing. The night before I ate something that disagreed with me and I stayed up half the night worrying about things I normally just put out of my mind since worrying about them does no good and just adds to the number of things I have to keep track of.

I wish so much for my kids, but I can't will them to health. It's amazing how much sleep affects my ability to deal with stress. And how when Special K cries because she's coughing, it still breaks my heart, even though Little T has endured so much more without a whimper. And I'm too keyed up to take a nap. I'm eating chocolate in an effort to improve my mood.

First Non-fiction book

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Slow

This week I didn't have any effective childcare until today. By effective, I mean childcare in which Little T wasn't crying and rushing over to me every half hour. While he's on steroids, only our nanny or the respite care people he knows can look after him without making him cry. While he may have problems talking, there's nothing wrong with the child's lungs.

I thought leaving home might work, but that utterly failed. His sitter called me and asked me to come home, because he was "suffering", because he was crying so much. Special K took it very well since I was supposed to be spending time with her. I can't take her out unless someone stays home with Little T, because he can't be exposed to germs. And as is typical, I felt a mixture of pleasure and annoyance. I don't know if this makes me a good or a terrible mom. While it was terribly annoying to have to come home because Little T was crying, I was pleased with my boy's social intelligence. He was crying a frenzy with heaving dramatic sobs utterly convincing in his great suffering. He stopped crying as soon as I held him and told him I was staying. He gave me a look of great satisfaction and a big grin. I just read a blog from someone whose kid doesn't care who looks after him. Definitely not the case with my laddie.

I realised that I have written 90% of the first three chapters, but still need to complete the toughest 10%, which will probably take more time than I want to think about.

Part of what I need to write about includes death, which I didn't even want to think about until Little T was stabilized. He appears to be stable and up on a upwards trajectory, thank you very much gods. So far during this current round I'm not worrying that Little T is going to die. (knock on wood) But at other times Kasabach Merritt Syndrome and his infections have threatened his life. And I'm not even going to link back where I've blogged about it like I often do. It just drags me back down. And I'm also superstitious.

So I'm at the point where I can feel the book proposal is so close to being finished, but the work to get it done feels very daunting. I'm off to take a walk. It's partly to clear my head and partly for a good cause. I have a bunch of books that I want to try and sell at our local second-hand bookstore.

Cherry red desk

We went to Ikea and bought a small red desk. I love the absurdity of its ridiculous maraschino red. Ikea was celebrating its 20th birthday, so we also got birthday cake. And the icing on the cake matched the desk colours. Perfect.

My desk fits neatly in the alcove between the sofa and the kitchen table. And somehow I fit my writing in between all my other activities and it brightens my days. It has wheels, so theoretically I could wheel my computer around and write all around the house. qqqqqq122222222222222222223v Here Special K sat down and interjected her thoughts. That's one of the disadvantages of having this new ergonomic set up. My old chair was a bar stool. She still managed to climb up, but it was harder.

After Ikea we failed to go a friend's games party, which was sad, because Special K crashed and fell asleep. Though it turned out to be a good thing, because she's remained healthy...so far. (knock on wood)

The day after we went to a lovely fondue party, which Owlmoose blogged about. Unfortunately C was very tired and fell asleep, because Little T was up a lot....getting sick.

At the party I had a parent moment. You know one of those moments where a non-parent stares at you in utter bemusement. Little T urped all over himself and me. He was quite cheerful about it, so I just calmly set about changing him and trying to wipe myself down with a paper towel. I know before I had children, the thought would fill me with horror. But now it's the screaming I can't stand. And I know it can get a lot grosser and I was thankful it wasn't.

Unfortunately my gratitude was short-lived. We're now into day two of screaming and explosions from every orifice. My nanny is here. He's finally gone to sleep. And I'm thinking sweet cherry red thoughts. I'm also taking a couple days off from writing. My writing is back in the NICU days, and I start to worry too much about his illness, even though he just has a stomach bug. At least I hope so. Knock on sweet cherry red desk.

My take on disabled people having kids on a good day

Today was a relatively good day, albeit not a very productive one. I took Special K and Little T to gymnastics. Little T and I watched while Special K mostly did the right thing. She seems to have a hard time listening to the teacher. I think there's too many other distractions like other classes and interesting equipment. In her evaluation last week, she received a few hearts showing she has learned a few things, but no heart by "listens and follows directions." But most of the time she listens and follows my directions.

And today is what I wrote answering the question "Should disabled people have children?"

I have two children ages 3 and 11 months. My movement disorder makes certain things more difficult especially since my younger one has feeding issues related to the aftereffects of chemo for his massive lifethreatening tumour.

I'm a good mom. My kids are both happy and reasonably well adjusted. Being a mom is so much more than being able to provide for them physically. At 3, my daughter can already do some physical things better than I can and she needs less and less physical care though she'll need me to drive her places until she turns 16.

I really wanted to have kids, so somehow I've coped. A lot of able-bodied people find having children difficult. In some ways I have an advantage, because I never expected it to be easy. Everyone has their limitations. For some, those limitations whether physical or mental may mean they shouldn't have kids. However I don't think having a disability, or a bad temper, or whatever your issue is, in and of itself should prevent you from having a child. I think the real questions for any potential parent are
"Are you willing to do whatever it takes to put your child/ren's needs first?" Some parents confuse needs with desires. I mean needs.
"Are you willing to change your entire life so your child/ren can thrive despite your limitations?"