Sorry relatively long absence again. The thing of it is I've been a lot more physically active and more centered since I got home with Hermione. I wrote more about this on blogspot, but the main thing to quote another LJ person with disabilities is I've been thinking of myself as "an okay person with a disability instead of a defective normal person" I'd say a good person actually. I hadn't realized how much time and energy I spent trying to "fake it as normal" aka do things that hurt, aggravated or added up to such without thinking about it.

I spend more time sitting down and more time walking. I spend more time saying "No, I can't do that." I've even stopped apologizing for not able to fill in useless forms. I spend more time getting my kids to do things that they should be doing like cleaning up their toys and less time either cleaning up after them or feeling bad that it causes me pain to do so. The kids seems happier. The house is cleaner.

I've spent more time thinking about how I can make things easier for me. Get a scanner, so I can in forms I have to fill out and do them on the computer. And less time worrying that I don't do enough. I'm a good manager. And we've managed as a family because I've managed people to do things for Little T so his life and therefore the entire family's life improves. Until now I've always felt somewhat bad for doing the same for myself even while knowing that when I'm doing better the family does better. And even now I'm squelching down a little voice that says I should be vaccuuming or whatever else hurts me and is what a "good housewife should do" which somehow gets conflated with "stay-at-home mom".

Good news
The new pump works a lot better than the old one.  For example if Little T rips the tubing it does continue to pump formula all over the crib.  I stand and cheer for this one.  It means we don't have to fully wake the three of us up.  It means   The only problem is the alarm is higher pitched (bad for C) and softer (bad for me) so we don't always hear it.  We may try to get a prescription for the Zevek Infinity if the problem persists because it has a loud and soft alarm setting.

Little C can answer "Who?" questions. He's particularly good at identifying Thomas the train himself and his sister. Before he answered such questions with a blank look.

BTW if you have a car obsessed toddler who has trouble saying the 't' sound I highly recommend introducing Thomas the train into said child's life. Before Thomas he said "woo woo" for train and never said his own name. Now it's "Thomas" and [Little T] all the time.

I must admit the videos have the most insipid music close to Barney's but he's old enough and obsessed enough that I can leave the room. He stands about 2 inches away from the tv.

Also good news as read in the Ophthalmologist's office standing so close isn't bad for kids' eyes. He refused to cooperate with any of the tests including depth perception.  He was mad we switched off the tv.  However the Ophthalmologist checked his eyes and said they looked normal.   He'll go back before he's five and presumably more cooperative.

The IFSP meeting went well. We continue all our services and maybe we'll actually get an LVN to relieve C of a couple nights of Little T's feedings.

Our parents club is having a stuffed toy drive.  We had l3 stuffed toys to give away.  The email also explained how to wash stuffed animals in the washing machine.  I had no idea this could be done.  A white bear someone gave me in college is now white again instead of gray.  It's a small thing that brings me joy.

We finally got the kids' passports done.

Mixed news
The transition meeting from ISP to IEP confused me.  Then it concerned me.  Same story as with CCS.  Little T doesn't fix the standard categories and we have to get a diagnosis that mentions one of the many issues he has that fits the categories. Then I heard about Medical.  I had no idea he could qualify.  Lots and lots of paperwork to get all this.  But I hope I'll remain victorious.

Bad news

There are still many unresolved issues and to-dos for Little T most of which I have to deal with.  I think one of the issues I'm having is the feeling this will never end.  I'll always be chasing around agencies.  Logically I know this isn't true but I also know that this will be an issues until at least Little T turns 3 and moves on to new agencies. 

In my ideal world Little T is developing and growing so why my workload would shrink.  Instead we have new and different problems.  I am grateful that we have different problems instead of being stuck with the same problems.  Little T is now changing every week. It's wonderful to see.   I always knew he was a smart boy and now everyone can see it.  But I have a new worry to replace the old worries I had about Little T.  This new worry is better in that it is not life-threatening but unlike the previous worries it may be lifelong.  I'm just not willing to write more than that down though I have said it to C and his doctors. 

My library has only half the season of the second season of Buffy.  Also a small thing but disappointing.  It has every other season complete.

A couple nights ago I had this dream I was pregnant again. I woke up, not scared, just thinking I should pee on a stick, and find out for sure. Previously this would have been a nightmare for me. Of course I'm not. I am exhausted much of the time. I am, as the Catholics would say, Immaculate.

Nothing in my pregnancy/infants has gone according to any plan. I have to admit I haven't shared my story with anyone in its entirety, except for C. But today I want to. It's helpful for me, and may be helpful for someone else.

Before Special K, I had an unplanned pregnancy despite use of birth control pills. I continued to take them hoping that would result in a miscarriage. Thankfully it did. I wouldn't have been able to have an abortion, but once I was pregnant, I realised I didn't want a child with my boyfriend (who wasn't C), even though we had discussed getting married and having children together.

Special K was also unplanned despite condoms. C and I were already engaged. But for a time I was annoyed at the timing. I was working full-time, getting my MBA, and planning a wedding. Shouldn't stress prevent conception? Clearly not in my case.

After Special K was born, I wanted a particular timing between the kids -- 2-3 years. I started charting, and actually trying to have a baby. A novel concept for me. On our first try, I got pregnant. Unfortunately it was another miscarriage. Was it because I flew early on in the pregnancy or went to a volcano with nasty gases? Or just a bad egg?

I was pretty crushed. We took a break from trying for 3 months, though I continued to chart. Then we both felt ready and tried again. The result was Little T. The timing was perfect. Little T's health was castrophic. I have never regretted Little T for a second.

But I have learned that I can't plan anything to do with my pregnancies. I am content with two children. But I still have this feeling, we'll wind up with three. This thought used to fill me with terror.

The saying "abstinence is the only reliable method of birth control" is perfectly true in my case. Great for teens. Not great for a married couple.

C is supposed to get snipped at some point. However I have heard of women getting pregnant, despite the man getting one. Once in a great while, the snip repairs itself. I wouldn't put it past us to achieve such a feat. I'm not willing to undergo major surgery myself, given that I have enough to deal without adding major surgery to the mix. And as women sometimes have ectopic pregnancies after the procedure.

I'm very pleased that I have passed the milestone of no longer terrified of becoming pregnant again.

C and Special K have been made several batches of No Knead bread. It seems easy and Special K loves it. C said he never made bread before.

After a party for C's work, I had to spend the weekend, Monday and Tuesday in bed. The vibrations from the loud music really bothered my toe and it took me a while to figure out what the problem was.

( More stuff about my toe )

It turns out my toe is broken. The tons of ibuprofen I'm taking for my tendonitis were masking symptoms. Like my toe didn't swell up that much. However it remained this lovely black color and the pain started getting worse on Friday so I went to Urgent Care.

Urgent Care said I broke off a piece of my second toe. They said it should heal on its own but I need to go see a podiatrist. I want to go see the same doctor who looked at my ankle before. Then I can tell him I broke my foot just so I could see him again. Ha. No, he was a good doctor.

C said he was concerned that this relates to my diagnosis of borderline osteopina. I've never broken anything in my life before. Sprained my ankle tons of times even ripped all the liagments in my foot, but no breaks.

I don't have a cast, but get to wear this lovely shoe 24 hours a day. I tried taking it off at night, but my toe hurt worse.

I haven't blogged much recently for two reasons.
1. What's black and red all over? On Sunday I tripped over Special K and somehow badly bruised my second toe. It was black in the back for a while. Now it's purple in back and black in front and a bit swollen. C made me call the doctor yesterday who said that the bruising moving around is normal. I can move my toe. I don't try to walk on it but it hurts less a sprained ankle. However the level of pain isn't a good indicator for me since I have a high tolerance for pain.

2. I was feeling irritable and stressed out. It's hard to say if it's the drugs. Or the fact that C got sick again and at first didn't tell me. He says he's better now. We also had several serious discussions about Little T and Special K's education. And I found those also stressful and draining.

I've been jerking more which is irritating. I spilled two bottles of pills all over the place.

Then yesterday I started to feel more myself. I laughed several times.

My insurance approved 4 chiropractic visits. To a different chiropractor than the one I've been going to, but hey I'll give the other one a try.

Pulled from kynn



Ironic that Google has this nice logo in Braille, but you can't create a login if you're blind. You know those verification things that verify that you're a legit user. Well if you're visually impaired, you can't use them. Most major Internet companies including Yahoo, have an audio option. Not Google. So please sign this online Google Visual Verification Petition to get Google to make their site accessible. The petition asks Google to follow their mission statement and "not be evil" to blind people.

spoon story shadesong blogged about describe folks who live with chronic illness or debilitating disabilities. When I was pregnant with Little T, when I was healing from Little T's traumatic birth, I guess I had fewer spoons. Though the analogy isn't quite fluid enough to really work for me personally. Ironically I'm too tired to think of a better one, except a battery though that's hardly original. Any thoughts?

I've been searching for a radio station that I can customize and actually works. That perfect match. Looking for a girl like you to come into my life, Pandora Maybe you're the one I've been searching for all my life! Thank you Neil Gaiman!

Julie produced this wonderful spoof of a Baby Einstein video. Even if you're not a parent, I think you'll find it funny.

We had company over which was lovely. My friends had a nice lunch in my garden while the CCS social worker did her session with Little T inside. She showed me why Little T will pull up in certain places, but not others. It made perfect sense when she explained it, but I'd have to think about on my own. I don't think very well spatially.

I wrote 500 words today up to 15,325. I'm totally obssessed with my non-fiction book. But after having a good talk with Jenny last night, I know I'm in a down phase. I really hate spraining my ankle. Bad stuff from my childhood. I feel it's a moral failing. I'm literally and figuratively lame. It's okay to be disabled as long as I'm not limping around. It's okay to be disabled as long it's partially hidden. It's worse and better that my ankles are hyperflexible because of my disability. At least I know it's not just because I'm a total klutz.

I hate having to literally have to count each step I make. I started to tell her it was the writing that was killing me. Guilt about that coming out. But actually I was feeling pretty good before I sprained my ankle. I was getting stray projects done like getting rid of books. As she kept telling me, I was getting my groove back. It's hard to groove when you're lame.

But after I said some stuff that out loud to her and blogging more stuff here, I feel a bit more free. I don't want to pass on this crud on to Little T. I sprain my ankle about once a year. Last year I was 8 months pregnant with Little T, so it's a lot easier this time around. Maybe this time I'll do my exercises better or something and I'll avoid it for longer. But I just have to face up to the fact that at least for the foreseeable future, it's part of who I am. It's part of the me that jerks. It's part of me that can't drive on the highway. I just do the best I can with the body I've got.

Special K seems largely unaffected by my lameness. She can now dress herself, get her own food, go to the bathroom, and play. She does need some help, but it's not like last year where she was frustrated and hobbled by my injury. Little T is too young to care. He just wants to be picked up. But I'm asking for more help this time. Next year will be better too. Little T will be able to do more. Special K too. I'm not sure what it is about this time of year that causes ankle sprains. I'll have to think about that. Got any ideas?

Sixteen years ago, I was at Bryn Mawr College during the Loma Prieta earthquake. A lot of kind people asked if my parents were okay. My parents live 100 miles away, so they were fine. I was touched by people's kindness and also amused by their ignorance of just how big California is.

I sprained my ankle on Saturday night. We were rushing to see Wallace and Gromit. I stepped too quickly off the step to the garage and slipped and fell. I have hyperflexible ankles due to my disability. But mostly I was rushing too much. I also should have asked C to get my ankle brace before going to the movie. He did get me an ice pack. But shoulda-coulda-woulda. I'm trying to let go of useless recriminations. It's a hard habit to break.

My cold has also worn me down. Special K asks every few hours "Mommy, are you still sick?" "Yes, I'm afraid so." I answer. C told me "You've been sick, lame or sleep-deprived for over a year." It made me feel sad at first. Then I realised it's basically true, yet I still carry on. I wrote 300 words yesterday on the Road to Mandalay. I wrote 1200 words today on my non-fiction book, which is now 13,820. Still keeping up with my quota.

I cried on the way home from Little T's hand apt, because the hand surgeon told me that Little T's left arm probably wouldn't improve much. I wasn't going to cry. I was going to just tough it out. Then I thought to myself "If I were my friend, would I think it was okay to cry?" So I cried. Not as much as I thought I would. I didn't have any particular dreams for his arm as such.

It did really hurt to hear that part of the cause might be brachioplexus. I'm still letting go the small voice that blames me for not making the horrible OB do an ultrasound on Little T's entire body and not just his head. When I was admitted, the nurse examined me and probably felt his arm and asked for an u/s to see where his head was. The OB on duty very snidely agreed and just waved the wand briefly over his head. I had a fleeting desire to ask to see the entire body, but it seemed silly at the time, so I didn't ask. If she had, she would have seen his huge left arm, and we'd have both been spared an incredibly traumatic birth. Even if she had no, I'd have felt less regret, because I'd have done every possible thing I could. I so rarely regret speaking up and asking for what I want, but there it is.

And that reminds me of my uncle's question "How do you cope with all this?". He asked me as we were sitting at the reception of my brother's wedding, which no doubt influenced my answer: We have some choices in life, but a lot of our choices come as part of a package deal. I didn't grow up in the richest country in the world, but I choose to stay here. I chose C to be my husband. I'm happy with those decisions. Even knowing what I know now, I wouldn't want to choose someone else. I choose the entire package.

And I didn't choose that horrible OB and probably she'd have just made fun of me for asking to see the entire body and refused. I went to the hospital in labour, but not active labour, and my water had been broken for just two hours. It was also my second birth and with my first, my sack had not broken until almost when Special K was born. Even so, the OB insisted that she give me pitocin. I equally insistently refused. I said I'd go into active labour on my own. I was right. And pitocin might well have killed Little T. So I got the big thing right. She got angry with me and that clouded her judgement. I think she labelled me as a "difficult patient" and ignored her nurse who noticed something was wrong.

For some reason, the hand surgeon asked if I wanted to have another. We have thought about it. He said "It's not hereditary." I know that. And unlike perhaps many able-bodied parents, I never had the dream of the perfect child. And I still wonder if Little T might not also have my movement disorder as well. Special K doesn't appear to. I just don't know if we can handle Little T and Special K and a third child. We were thinking two kids before Little T was born anyway. But never say never.

And I realised it's so much his arm that bothers me. It's other people treating him badly. I mostly want to spare Little T a painful childhood. Because I know what it's like to be teased mercilessly because you have a disability. But at least I can provide him a soft place to land. I already know he's a very strong person and there's just something about him that attracts people, charisma if you will. I think if we can get him through all these hospitalizations in one whole piece and that's still an if in my mind, he'll be okay.

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?"