Friday, October 10, 2008

Japanese Garden Feeding the Koi

On Wednesday, Wren and I went to the Seattle Arboretum Japanese Garden to feed the koi. I have been meaning to go for a few weeks and am lucky I did because it was one of the last days they were selling fish food. Apparently, as the water temperature drops the fish go into a kind of hibernation (metabolism drops) and they eat little.

When we arrived sun was breaking through between huge purple mountains of cloud. Wren ran straight to the bridge and I game him small handfuls of food for the fish waiting under the bridge. He loves feeding them - there are also Koi at Swansons nursery and we get really close to them there and he tries to touch them. Here, he stood and chatted about the fish for about 20 minutes, carefully dropping pellets of fish into the water.

Eventually, I managed to persuade Wren to walk around the garden. It is a beautiful place, very tranquil and ordered. Unlike English country gardens or most of our gardens, the aesthetic is controlled and everything non-essential is removed, shaped or pruned in a way as to reveal the intrinsic form of a plant, moss, a rock or a puddle. This makes it very satisfying for a toddler - its a series of dioramas: little river, beautiful rock, hidable bush, bridge and fish. Wren did not respect the paths as much as he should and tried to hide in shrubs along the way. He hid in this one before finding it too small:

Inevitably, we returned to the bridge for more fish feeding (a second bag of food). This time, a hungry duck decided his odds were better OUT of the water. Wren did not like this. He said "Duck, go back IN. Duck IN. Duck DOWN." I waited to see how close the duck would come and the answer is VERY close. It ate from my hand for a while then I pushed it back into the water with my hand, causing wren much satisfaction. "Duck go down. Duck go down." he repeated.

We completed the circuit around the little lake (Wren calls it a "bath" - as in "fish in bath?" or "Duck go in bath!" by then, Wren was yawning and I pushed him back to the car at a jog as the rain started to fall heavily. We were lucky to catch a little sunny hour in the day.

No nap?
On they way home, Wren fell asleep in the car but woke during transfer to his bed. For the first time in his life he had no nap yesterday (well, only 10 minutes). He was quite distraught by 7pm and he went to bed early. Due to his head cold (yes Wren has a head cold) he has been waking during the night and getting up early but he did OK considering. He woke at midnight, 5am and up at 6.20am. I hope he naps today for Heather. I was a wreck by 5pm and even forgot Wren's soccer ball when we took Frost to soccer practice.

Remodel update
The flooring, Marmoleum, was delivered today. Installation will be next week.

Talking about Death

I subscribe to a number of invaluable online support groups which correspond via email and a recurrent discussion in these groups is how and when to speak about death with our children. I know I have told this to some of you but for many congenital heart defects, today's teen survivors are the first generation on the cusp of adulthood. Since techniques and technologies are constantly improving, we do not know the life expectancy of those who receive repairs today and the death of a hamster can open up a more difficult discussion in our families.

Here is my reply to a recent thread on this topic, replying to a mother whose 3 and a half year old with HLHS and unknown prognosis. Her preschooler asked when he would die and she wanted to avoid that conversation...

I would like to delay that conversation too and we have a bit of time since Wren is not yet t 2. However, Wren's risk of death due to his heart is very present in the mind of my 7 year old. I know it worries him but he looks to us for reassurance and help in interpreting the risk - not easy for us since Wren is facing surgery next month.

Just yesterday, I stopped the car at a crosswalk to let a very pregnant
woman cross in front of us. I said to Frost:

Me: Her baby will be born quite soon. She is very pregnant.
Frost: Maybe she is just fat.
Me: No, when you see a woman who has a very big belly like that but she is
very skinny everywhere else you can guess she is pregnant.
Frost: Oh.
Me: Lets wish her baby a blessing for a good birth.
Frost: Mmm, lets send him wishes that he doesn't die.
Me: He's not going to die! Almost all babies are fine being born.
Frost: Well, lets send him blessings that he doesn't have a heart defect.
Me: [thinking fast] We can send him the wish to have a good doctor if he
has a heart problem.
Frost: Ok. He will be fine.

Uh oh. I notice that Frost is very matter-of-fact about death and its risks. When I was a young girl my grandmother died slowly of breast cancer. Nobody spoke about death or what was happening and I lived for years in fear that I secretly had breast cancer [and was a rare pediatric case - as a preteen I even looked it up in a medical dictionary] but in my tragic narrative nobody knew I was dying all the time.

I think that children can cope best with fears when they have the freedom to air their worries with us. Remember, they have no context or perspective by which to measure the relative risk of anything and we can help contain a fear - even a very real fear of death - and make it manageable because, ultimately, even death IS something children can face. I think children do well with facts but are always alert for the currents of anxiety which can cause them to disbelieve platitudes.

Another example from our lives is when I told Frost to remember to wash his hands so Wren didn't get a cold because if he gets flu or a bad cough now his November 7th surgery date may get bumped. Frost said "and then he will die?"

"No," I explained. "Then we will have to pay a lot more money to change our airfares and find another date for surgery and to manage without Granny because she will only be here from Australia for a month at most."
"Oh," said Frost "So if he gets a cold we will be poor?"

I realize I have to spell out repercussions very carefully to avoid placing the weight of the world on his shoulders.

Wednesday, October 8, 2008

Lego, apples and fast food

This evening I was cleaning the bathroom and found an entire roll of toilet paper in the bathroom rubbish, half of it was soggy. I mentioned my discovery to Frost who told me it was a bit embarrassing but he had been juggling toilet rolls while on the toilet and "the toilet seat is a bit small for me so there was a hole and it fell in." He reminded me of a Roald Dahl story I had told him and said it was "kind of like that." I left it at that but I had to add "juggling" to activities to do while on the loo.

This evening I helped represent our school at the Parentmap Education Fair while Josh took the kids home. We had a booth and a board and brochures and spoke to quite a few parents who are embarking on the quest for an appropriate school for their little one. When I came home the island was covered in fast food containers. I knew this was going to happen - I even suggested Josh "pick up dinner on the way" - I knew MacDonalds was a likely choice BUT I have to say that this is why I cannot die yet. I fear that if I died the family would live on Fast Food and watch TV all day on weekends. They would have icecream for breakfast and play truant from the dentist.

I ate a cold cheesburger for dinner because Frost's burger had cheese and "you know I don't like cheese but Joshua ordered me a cheeseburger so I had fries and chicken nuggest and Sprite for dinner." When I came home he asked for desert!

Apples Apples
This afternoon, Wren and I did some cleanup in the vegetable garden. Sadly, we found that the weekend windstorm had knocked over the chicken coop Joshua was constructing and the window we salvaged from the kitchen remodel was smashed. The small fig tree had been badly damaged by the falling window and I shall have to wait and see how it does.

While cleaning out the raspberry patch I found many fallen apples and even more ripe apples on the espalier. The apple trees we have are grafted so each level of the tree has a pair of branches with a different species of apple. The ones ripe now are Fuji - love pink-red and round. I am going to clean, peel and slice them tomorrow and make a few apple pies. Here are our apples (I have since thrown away the damaged one.)

Lego BrickCon
This weekend Frost, Wren and I went to Lego BrickCon, the annual Lego conference and display at the Seattle Center. Frost had the camera and was mesmerized by the huge armies, buildings, minifigure dioramas and battles. He kept asking how he could enter, how good or large a thing had to be. Next year we plan to enter as a family.

Even Wren enjoyed the show. He wanted to get closer and touch things, especially the diggers, big trucks and little guys. He held onto the flags with both hands and bounced them up and down.

At the end, Frost spent all his allowance on a set of custom weapons from Brickarms. He begged me to buy a vintage Lego fort called Legorado but just as I conceded I found my debit card had been eaten by the atm and I could not get the cash. He is now 'watching' sets of 'cowboys and indians' on ebay.

Tuesday, October 7, 2008

Weekend at the hive

This weekend a strong windstorm swept through Seattle. While Joshua painted the kitchen lime green (aka Lime Twist) the gale tossed Wren's garden chairs about and lifted the hammock up like a parachute. The trunk of the big black walnut tree was swaying about a foot against the fence and at Frost's soccer match unattended balls were being blown off the field.

Painting is Complete
Despite the dreary and tumultuous weather, we got a lot done. The kitchen is now a very pleasing shade of green and I have almost recovered from the mess. Wren and Frost and I went for a bicycle ride to Top Pot Donuts and Wren ate almost an entire pink iced cake donut while Frost could stomach only half a "feather boa" donut frosted with chocolate icing and flaked coconut.

CHD Support Group Meeting
I attended the Heart to Heart support group meeting at Children's on Sunday afternoon. It was a longer meeting than usual because we had three new families in attendance. One is expecting a baby with tricuspid atresia, another has a 2 month old born with HRHS who has undergone the first of the three-stage Norwood procedure and the third has an almost 3-month old baby who has been waiting for a heart transplant since birth. I felt very sad and helpless hearing the story of Baby Mia - told by her quite remarkable parents. Mia has hung on for a long time waiting for a heart. The usual wait is 6-8 weeks for an infant and she has had to go so much longer than that. I know it seems 'good' when another baby hasn't had to die for her to receive her heart. However, the sad fact is that a number of babies died in that period but for whatever reason their parents have not listed them as organ donors. It is an awful process but Mia is still waiting for her gift of life while her parents live out of the closet-sized family rooms at Children's Hospital.

8 Hours Sleep for 2 Consecutive Nights
I should close on a this cheerful note. For the past two nights I have slept beautifully. I have gone to bed around 10.30pm and merely stirred when Josh came to sleep. Wren has woken for the first time around 5.15am and after nursing he has gone back to sleep until 7am on both days.

It has been delightful. I am full of energy and clarity. This is the best sleep I have had in more than a year!

Flights are booked
On an operational note. I have not yet spoken with Dr Lewin regarding our decision. I am fine with that - I suspect we are both all talked out. Meanwhile, I have booked us flights to leave Seattle on November 5th at noon. Josh - get your voting done early! We should arrive in CA by 2pm and have time to explore and be in our room in time to watch election results roll in after dinner.