My new life with Hermione, my service dog

Sorry I've not updated in so long. My whole life changed the day before Valentine's Day when I received my new partner service dog Hermione. She brings magic into my life everyday. We go out everyday by ourselves and I walk faster, because I don't have two kids in tow and because Hermione matches my steps, so if I stumble I have an area where I know to go.

I hadn't realized how much subconsciously I avoided going out without my adorable kids. But now I have a pretty dog. People smile at me and open doors for me and Hermione instead of getting impatient with me for being slow or dropping things or worse make rude remarks as if I can't hear. Hermione also opens my fridge door, pushes push plates and picks things up for me.

I thought I was getting a dog to help me. The organization I got her from is called Canine Companions for Independence (CCI). I've also thought of myself as an independent person and spent the first few days I was at CCI wondering if I belonged there with folks in wheelchairs. Then I got really discouraged as my spatial issues became profoundly clear. Then I actually worked on them instead of spending that time kicking myself for not for example understanding how a door opens without actually seeing it open.

One of my LJ friends put it best I've spent most of my life trying to "pretend I was a defective normal person instead of a "ok person with a disability." As one of my classmates said to me "I embrace my limitations rather than fighting them so I can do more." I am still exhausted from my training and my increased physical activity of exercising a dog and walking more. But my whole outlook has changed. I don't fight to get by. I try to figure out how to adapt conditions to improve my life with my disability. Already I'm doing more. I can't wait to see what future brings.

1234567890 seconds old

Yesterday my husband threw me a surprise birthday party to celebrate my being 1234567890 seconds old.

I loved the idea as a total nerd and because my regular birthday always falls right around Thanksgiving.

All my life I've wanted a surprise party. My husband finally pulled one off.

So far this seems to be a year of my dreams coming true, but all was not sunshine quite literally.

We drove through a terrible storm to get the kind friends who hosted my party.
And my parents' power had been out for the last 48 hours and so had all her friends, so my sister-in-law and sister baked my cake at the last minute.

My dad said that they got home to a cold dark house, and then a minute later the house lit up again like magic.

The whole thing was a great symbol of my life so far.

Mostly good Christmas

I had a mostly good Christmas. A few rocky spots, but the kids romped through with minimal crying.

They did stay up until 11pm on Christmas Day and then Little T fell out of bed at 4am with a loud thump and woke up crying. This symbolizes my Christmas for me. Mostly peaceful with occasional and unexpected thumps.

I'm still figuring out where the thumps come from. Part of it is that we visit my parents' house very infrequently except during the holidays. Mostly it's all managing the kids so that stress is minimized. Little T in particular has a certain routine and when that routine is disrupted, he cries. For a typical kid, this would be just part of the holidays. With Little T, I get into this space where I feel he's wasting calories. A bad space. We're a few months away to removing the g-tube forever. A feat we've accomplished by not stressing about calories and just working on feeding him.

Little T ate and ate and ate at my parents. I've never seen the boy eat so much. Honestly this was the highlight of my Christmas. I say this not to minimize the other joys of Christmas, but just that seeing him eating with such gusto after months and months of struggling with bags and bags of messy formula and vomiting and reflux filled me with such joy and pride.

Another joy was to see my little niece so healthy and active and curious and to watch Little T's utter adoration of her. He seems to regard her as his younger sister. In Burmese, there is no word for cousin, your cousins are your brothers and sisters. That's clearly how he feels. He loves babies in general. But he greets my niece as if she was the best baby on earth. She of course responds with a joyful smile. My niece doesn't bestow her smiles on everyone. She's a serious intense little girl who has things to grab, people to look at. It's funny how even at 6 months, personality is clear. Even as a newborn, she gazed at you with great intensity.

I had other joys and other rocky spots, a personal rocky spot -- my wrists and hands just gave out at about 7pm last night and started just aching a lot. A wrist soak and stretches and a good night's sleep got them to tentative okayness. But they are on the edge. Typing is one of the least stressful things I can do with them. Even so, I will rest them and end this post.

We hold it within ourselves to be good family

My package for my parents has spent Christmas eve sitting in the UPS warehouse about 40 miles from our house, so alas not in time for Christmas. I ordered in on Dec 18, so UPS does not get my Christmas cheer this year. But it does mean we will visit them again once the package arrives, so I guess it is good cheer for my parents.

We did avert one Christmas crisis by buying the last two Christmas puddings at Andronico's. Otherwise my mom would make it herself which takes at least 7 hours. I kid you not.

But the kids are really excited this year mostly about spending time with extended family and that's what Christmas is about for me. A friend who's had a particularly hard year this year blogged "We hold it within ourselves to be good family." And that's what I strive for.

Personally I don't care if we have Christmas pudding or not, but it matters a lot to my dad. So after a lunch with my brother's in-laws, we drove to Andronico's. My son was already fast asleep and my daughter who normally loves shopping refused to leave the car. I thought about whether to spend the wrist points to get out of the car and carry those puddings. My husband offered to do it. I briefly wished my service dog was already here. But I decided that getting the right pudding was worth it and my husband doesn't know about Christmas pudding. So off I went. I returned and discovered they had overcharged us. My husband just said he'd go back. He understood the cost to me to go back again.

My mom only vaguely understands my daily pain and my dad not all. My service dog may teach them. I have no idea. But I've decided it doesn't matter. My children don't understand the costs of the things I do except in vague terms. Sometimes we talk about wrist points. And I don't really want them to. I try to be good family.

Lifechanging news, exciting news and commenting

My first and best news is that I will getting my service dog in February. I was invited to Team Training at Canine Companions for Independence (CCI). It's the best holiday gift I've ever received!! I feel incredibly excited and blessed.

Around the New Year CCI will send me an enormous binder chock full of info basically everything I'm expected to learn in Team Training, so I expect to blog more about this. Not the contents themselves since that belongs to CCI, but rather my reactions to it all. I should note that CCI has a pretty strict policy against not revealing the name of my dog or identifying details about my dog until graduation which will also be my sixth wedding anniversary. My human partner has graciously agreed to share the day with my new dog partner.

I do like the CCI logo a lot, but as it involves a person in a wheelchair, it doesn't seem quite appropriate to put in my blog as I'm not in a wheelchair. I know it's the universal symbol for disabled or special needs which I definitely claim. And I even have a disabled parking placard. Still I'm at a loss what picture to put for this post, since I don't know what my future partner will look like. Oh well.

Not life changing, but exciting Peter Jackson will be producing The Hobbit in 2009 in a two part series.
It was my extended family tradition to watch Lord of the Rings each Christmas.

Of less importance to me personally, but of import to readers of this blog, you can comment now using Open ID.

Dear Santa Paws

I've been a pretty good girl this year. Here's my real wish list

1. No more hospital stays for Little T. I know a year is a whole lot to ask when we have only managed a few months, but that's my biggest wish.

2. No more visits to the ER or Urgent Care. Yes you gave us fewer than last year and they were not nearly as scary as previous years, but I'd really like none next year.

3. Little T's g-tube to be removed forever. His GI doctor says he's close - maybe 3 months and maybe that will allow my first two wishes to happen.

4. Better health for my parents

5. A service dog of my very own

6. A path to writing success

7. Peace for my relatives who struggle everyday just to get by

Thank you very much for your gifts this year including, but not exclusively:

1. Little T's improving health and learning how to talk

2. Little T's wonderful preschool teacher

3. Special K's love of reading and thriving in Kindergarten with her own wonderful teacher. And Special K's continued good health. Something I sometimes forget to mention, but never take for granted.

4. My friend L who drove me and my kids all over the place until I could drive myself and has in many other ways been a true friend this year.

5. C finally feeling things are okay enough to go ahead

6. My brother's healthy baby girl who also seems very bright and curious and social. Little T and she adore each other. As if in solidarity, she even has a hemangioma on her left arm, though hers is harmless like 99.7% of hemangiomas.

7. Our prosperity when others around the world including my own relatives have so little

8. Although I am never pleased to see horrible violence, I'm pleased that the world has noticed Burma just a little.

9. All the kind CCI people who showed me their dogs or sent me photos of dogs this year or wrote to me about dogs. You make waiting just a little easier.

So happy about my tea

I'm so happy to learn that my favorite tea Tetley advertises at least on its website "Tata and Tetley not only share a passion for tea but also a commitment to operate as a responsible business. Use these links to find out more about what we’re doing to manage our environmental, ethical and social impacts."

I had been debating if I needed to get a more expensive tea that I like less in order to have fair trade tea. I think fair trade is far more important than organic when it comes to foreign produce and of course tea doesn't grow here.

Nerdy giving

I love Free Rice. Maybe it's because I achieved the maximum score of 50 and gave 570 grains of rice to UNICEF.

When I think about it, 570 grains is a pittance, but I loved playing the game. It filled me with nerdy joy, and I even learned a couple words too. I believe this is the first time my large vocabulary has directly resulted in doing good. I'm working on doing it both more indirectly, but today with both kids home from school on holiday is not a writing day for me.

Slimy yet satisfying

In the Lion King Pumbaa says "Slimy... yet satisfying." as he eats a large grub from a rotten log. This is how I'd describe the IEP process at the school district where my son was transferred. Our district has no program for his "low incidence disability" --school speak for we don't see many kids like this so we have to be more careful.

We love the special preschool he's in and adore his special ed teacher and like the other kids. And our son's already making measurable progress after only a month in. He's started to climb stairs without holding onto a rail. I thought he couldn't get more confident but I think I was judging him as a two-year old and he's three. He asserts himself more with words. He used to be quiet around other kids which I stupidly accepted as "just being a boy." Well he's not quiet anymore. And he was never quiet at home. This preschool is definitely the right fit for him.

The school district... Well. It's only two years. And we can work with them as long as we don't look too carefully at the whole thing. One the plus side they're organized in careful segments....

Anyway if I had to choose I'd choose this way. Because we're not moving anytime soon. Our older daughter loves her elementary school. And our school district special ed people are disorganized but so far warm and friendly.

Pencils inspired our Halloween

After reading from a mom of a diabetic kid and thinking about how fat many kids are we decided to supply Halloween pencils stickers and spider rings for treats. We also had about 12 pieces of candy but those didn't go until the end.

Pencils were by far the most popular. "Cool! Pencils! I need them for school." exclaimed one boy. We bought 3 dozen Halloween pencils for a dollar a dozen and by the end of the night they were all gone.

It made me feel good that I was actually contributing to a child's education instead of their bad health.

I guess if everyone gave away pencils it wouldn't be special any more but Walmart and dollar stores are full of little cheap things. And maybe part of the reason pencils were so popular was that my husband was so excited to be giving them away. The kids had a choice but the pencils sat bright and shiny at the top.

Did you give something away this Halloween that interested you or inspired you? If not what could you give next year?

Steps for Little T one huge victory

Little T can climb up and down the steps of his school bus by himself. His preschool teacher says she has worked with him on steps everyday. How she accomplished this miracle I don't know since in therapy sessions it has been difficult to say the least. Picture a screaming boy at the top of our stairs. Bribes offered and refused. Lots of "No" screamed loudly.

No screaming at school. But then it's hard to refuse his teacher anything. She makes it all sound so sweet and reasonable.

It looks like Special K will be a Daisy Girl Scout if we can find one more girl in the entire school to join the troop.

I really like being able to walk to Longs. I'm still perhaps a bit overly excited to have a Longs in my neighborhood. I think it brings back childhood memories of biking to Longs as a child and Longs was this wonder store full of delights like candy and Merlin the electronic game that all the kids wanted and amazingly my parents bought.

Bodies in motion

I'm thankful my husband made me tea and went shopping with me and Little T. Something he does quite a lot. He's really a very nice man.

It was good but a bit painful to get my back worked on. It was sweet to see that although I woke Tucker from his little puppy nap. He got up lifted his head and greeted me with a little puppy snuffle. To me it sounded like an "I know you and am happy to see you" sort of noise. It reminded me of how my children as young babies used to snuffle before they could coo at me. It's funny how in the end we're all mammals. I read this breeder's journal about her puppies learning the commando crawl. Oh yes I remember my kids learning that.

I loved visiting Little T's preschool today and seeing how excited he was to participate in "body class". The OT made it all about fire safety and engines. How could he not be excited. He laughed as he bounced on the big ball.

Gratitude

I'm happy because I kept Louie engaged 95% of the time yesterday during our lesson and he only tripped twice even though we were walking and we had a side walker too.

I'm thrilled that Little T is alive. A friend just wrote that yesterday was Infant Loss Day. I have no idea how or why he lived that first day but I'm so glad he's still here.

I'm pleased that the reason my butt still hurts is that the muscles are still tight and pinching a nerve. A good hard massage from my chiropractor Dr. Deb helped and I hope it will heal over time.

My kids and cat fence keep my cat Mori young

Yesterday at Mori's annual checkup the vet said that Mori looked like a younger cat. He's eleven years old now.

Last year he went to the vet having snuck outside and been abused by a neighbor who was convicted of animal cruelty and had to pay my vet bills and serve community service.

For several days he dragged himself around the house like a very old man. We worried about it and gave him lot of very gentle petting and tried to cajole him to eat and drink.

Now we have built a cat fence for our back yard. Yes they do work but periodically he finds a chink and worms his way out again. So we walk around trying to find the 1/4 inch hole he's exploited and patch it up. It seems more like something to do than a discontent with our back yard. He always returns at mealtimes meowing at the front door or when called. And our other cat seems perfectly content to stay in our yard and has never once escaped.

The back yard provides exercise sunshine and a lot of ways to run around. He also comes inside and gets a lot of petting and attention from the kids. My daughter carries him around with her arms stuck out. He's so big compared to her that he's secure but it's very peculiar to see them together. Then he wants less attention so he goes into our yard again.

Thank you

Thank you Fenders Collision for fixing the latch on my car door so it shuts properly. You had the right tool and just screwed it in. And you all are so nice.

Thank you for the nice handwritten note my CCI friend.

Thank you Little T for having good vision even if you didn't want to cooperate with the optometrist.

Gratitude journal

I've been trying to think what to do with this blog. I have my LJ. It's where I started and where I feel most comfortable. I have a little community there. Here I don't...at least not yet.

But I realized this blog has a place. I tend to record more negative things than positive because I tend to focus on the positive. I record the negative so as to lay my burden down. I think this gives a skewed version of my life. I don't care so much about that since no blog can capture the complexity of a person's life. What I do care about though is that I don't have the greatest memory. I want to record the everyday things that make me happy.

I also find myself falling into the pattern of my parents. When people ask me about my kids I talk about problems or funny things. I find it hard to say to others that I really really really adore my kids although I tell them all the time. I guess it's a lot better than the other way around. So in this blog I will try to record the things I'm grateful for.

The kindness of strangers

Yesterday my husband and my two kids tried to go shopping but emerged with literally nothing after 3 stores. My healing broken toe throbbed, and I was starving. The kids were too cranky to be put back in the car, so I hobbled to a noodle place in the same mall. And I discovered I lost my purse. Horror.

I walked back to Target, but I was too worried to think about my toe. I wandered the circuitous route we had taken around Target. I could not find my purse. No one had turned it in.

I hobbled back to the noodle place to eat. I had ordered the wrong noodle dish. I was very sad. Everything was going wrong.

I had to try once more. So we drove to Target. I stood in the long Customer Service line. I felt forlorn, and lost too. I thought about how long it would take to replace my driver's license, credits cards, etc. Time I did not have. I felt very very tired.

Then like a miracle, I saw my purse sitting behind the counter. Thank you kind and honest person who returned my purse with everything inside!!!

I was too tired to cry "Praise be!" but I must have looked very relieved. The person behind the counter said "We paged you." in a kind voice. I believe in miracles and the kindness of strangers.

Laughing in the hospital

Little T literally laughed in the ER. You'd never know from this picture that he was here in the hospital recovering from a life-threatening bacterial infection back in July 2005. He turned blue in my arms at home twice. He coded twice at the hospital. Teams of doctors rushed in and saved him.

But a few hours later my sister held him and he laughed again.

I no longer worry each day whether he'll still be here in a concrete sense. And I've been bogged down a lot by the constant grind of day to day care of a special needs kid. I've also been feeling depressed lately due to the medication I've been trying from my movement disorder. But this photo really lifted my spirits. It reminded me how far we've come and how he still laughs with that same wide open grin. I hope it lifts your spirits too.

My children the aquarists

"What was your favorite part?" Special K asked over and over again on the way home.
My favorite was watching Special K and Little T laughing and laughing and exploring everything.
But Special K asked the question, because she really wanted to say "My favorite was watching the otters bang the ice against the glass." We watched the sea otters feed. Towards the end they were given rings of ice with fish buried inside. So they had to crack the ice to get at the fish.

Many of the Monterey Bay Aquarium exhibits are at Little T height, so he pulled up over and again and cruised around, even taking a few steps to see everything. If it weren't so far away, I'd take him there all the time, because it's great for his physical therapy.

We also got stamps for our Special K's Official Explorer passport. Special K got a poster for collecting 4 stamps by visiting various booths. If we get obssessive visit a lot of different places by December, she can earn 30 stamps and get a sweatshirt. But I think we're going for 20 10 stamps. Must not get obssessive. Must not get obssessive.

Love of Learning

Edited: My two kids' relationship goes in waves of fighting, or sweet sibling bliss, never in between. A couple weeks until yesterday we had a particularly long bout of fighting. Little T was smacking Special K on the face. She cried in pain and bewilderment. He'd climb over her to get somewhere else, kneeing her in the process. He'd grab her toys and scream until she gave them to him. "He's so annoying!" was Special K's constant refrain. Not exactly a great photo for Love Thursday. :) Then today as if on cue for Love Thursday, as we were driving to gym this morning, I captured more recent love.



Yesterday Special K and he had a playfight where they tumbled about and tangled legs, and laughed and laughed. After that he kept jabbering to her sweet nonesense. "I don't understand what he's saying!" Special K exclaimed as bewildered but also delighted. He follows her everywhere, tries to keep up with Special K and her friends. When she was sitting at dinner yesterday, he pulled himself and leaned his head against her several times putting his arm around her. Then today this moment. I hope love will reign for a couple weeks.


Here's the original photo of another time when love also reigned, but back in November. Special K is copying Little T, who is pointing at something and I'm sorry, but I've forgotten what he found so fascinating. So it shows Special K and Little T's love for each other and their curiousity aka love of learning.



For Love Thursday