Saturday, September 11, 2010

Three years

Oliver is three years old today. Shami and I will do our best to make his birthday fun and joyful. A day to celebrate the amazing little boy that he is. And he is an amazing little boy! I hope it will be a happy day for him.

We try our hardest, but the anniversary of Oliver's birth remains a painful day to smile through. Today is difficult not only because the memory of 3 years ago is still raw, but because getting through each day remains a struggle. Overwhelming grief still visits too often, and sorrow accompanies me everywhere. Many things have not progressed as we had hoped.

For Oliver physically, I wish I could write a different story. As hard as he works, there has been little improvement with his motor skills this year. No milestones have been met. Inchstones? Maybe. Perhaps he has a little better control of his arms. He can now usually roll himself from his back onto his tummy, and will actually spend time resting in that position. That is good. These last 2 months he has also been exploring just a little bit with his mouth, putting his hand to his lips, and occasionally his thumb or fingers find their way inside. And believe it or not he is usually okay with it (when it doesn't make him gag). He even seems a little curious. And for the first time he can initiate a game independently… peek-a-boo. He learned to reach for a towel placed on his tummy, grasp it with his hand, and hold it long enough to raise it to his eyes and then down again. He is clunky and not always successful, but he can intentionally do this himself, and it brings tears to my eyes. He delights when we exclaim "Where's Oliver? Oh… there he is! Peek-A-Boo!"

But I had hoped for more, and dreamed of much more. Hope remains my worst enemy. It can crush me like nothing else. Oliver's efforts should yield more success for him. He still has very little core strength in his torso and neck. He constantly kicks and thrusts himself back uncontrollably. He can't control most of his gross movements, much less movements with his hands and fingers. He has made little to no progress with his ability to sit, walk, vocalize intentionally, eat or drink. And some things are getting worse. His CP is affecting his skeleton more and more, and his spine, torso, hips and legs are becoming more problematic. He still lacks basic oral motor skills, and still cannot swallow well. He is grinding his teeth away, and his reflux and vomiting remain terrible. The frustration he feels when he tries, tries, and tries again to do a simple task, only to fail, is agonizing. I fear he is beginning to understand that he is different. That he can't do what he wants to do. That he can't do what others do. And I don't know if I have the ability or strength to help him through it.

But Oliver is an amazing child, with a wonderful personality. He has a great sense of humor, and he thrives on silliness. He brightens the room with his giggles. He loves the outdoors, especially going for walks in his stroller or swinging at his cousin's house. He enjoys working on puzzles, and he loves trains, dinosaurs, and space. His spirit is strong, and cognitively, Oliver shines. He loves words and numbers, and he has an incredible attention span. He listens intently when things are explained to him, and he works very hard at everything he tries. He impresses everyone who makes the effort to spend time with him and really get to know him.

A year ago, at age two, Oliver knew his basic shapes and colors, and his alphabet, both upper and lower case. He was even recognizing some words. We were blown away. Soon he was spelling and rhyming simple words. And for a while now he has been rhyming tricky words. For example he will read "blue" and rhyme it with the written words "two", "flew", "shoe", and "do". He will rhyme "tree" with "flea", "me", and "see", but not with "please" or "sneeze" until I add an "s" to the end of "tree". He will rhyme a picture of a square to the word "chair", or "pear", or a swatch of green to the word "clean". I try to stump him, but it is not easy. And not only can he spell and rhyme, he can read sentences. We have fun playing "quiz" games where I'll write things out on a white board, and he'll have to read it himself, and answer written questions… or many variations on that theme. It is impossible to know for sure how much he knows or comprehends. But he shines in the word and reading games I play with him with our dry-erase boards. And he is pretty good with numbers and sequencing as well.

Oliver is a very bright child, but he is trapped in a body that fights him at every turn. I worry he will lose his spark because as hard as he tries, he physically cannot do the simplest things. I fear he will lose his curiosity because he cannot ask questions, or initiate observations or requests as children need to do.

This has been a hard year. I am told it is better to live in the moment, but I am haunted by the past, and as I look to the future I am scared of the life I see ahead for us. I thought maybe this year the anniversary of Oliver's birth might be easier for me, but it isn't. I am trapped in a universe where I am not supposed to be, looking out at others casually doing ordinary things we will never be able to do. Three years out, I still feel like a caregiver, a nurse, a janitor, a therapist, a teacher, a coordinator, a zombie, but usually not a mother.

September 11th will come and go, and come again. I can't help but have hopes for where we will be a year from today, just like I had hopes last year. No matter how many times I've been knocked down, hope manages to creep in. There will undoubtedly be changes this year. A big change comes on Monday when Oliver will get on a yellow school bus and start preschool. I hope that Oliver will thrive there.

I hope and yearn for many things. But regardless of what does or does not come to be, Oliver is amazing. I am, and I will always be, very proud of him. I love you Ollie.

Sunday, August 29, 2010

At the Zoo in Syracuse

A fine and fancy ramble to the zoo In late August, we finally made a trip to the Rosamond Gifford Zoo in Syracuse. It is not a very big zoo, but it made for a good day trip with Oliver, and allowed him to see real live elephants and penguins. There were many other animals there as well, but the elephants and penguins were the easiest to see, and the most fun for Ollie. The tigers were impressive, but I am not sure Ollie was able to see them very well.

Penguin swimming Meet the penguins
Tiger, tiger The elephants are kindly

It was a good trip, though it left me feeling a bit down. Seeing the animals in cages was sad. And seeing all the carefree kids running, shouting and pointing excitedly was also sad for me. We had to keep lifting Ollie up out of his stroller so he could try to see the animals. Lifting and carrying him is becoming harder and harder on our backs as he gets larger and heavier.

It's all happening at the zoo
We did bump into this good looking family of penguins. I think I deserve a medal for holding Ollie and getting both our faces in those holes at the same time!

Monday, August 23, 2010

Farewell, Mr. Toad

It was a lot of fun taking care of Mr. Toad this summer -- watching him metamorphose into a toad, and then grow from being miniscule to being merely tiny.
Toad on a quarter

I was so attached to him that I thought about getting a larger aquarium and keeping him all winter. But it was tough finding enough food for him to eat. I'm sure fruit flies are yummy, but Mr. Toad needed more to fill his belly, and finding bugs and worms that were just the right size for him was surprisingly difficult. As the summer went on, it became clear that it was time to let him go so that he'd have enough time to establish himself before winter set in. Shami, Ollie and I decided to let him go near a small pond in Sapsucker Woods.

Leaving with the toad Waving goodbye

Here's our cute little guy leaving the nest. I hope he'll find lots to eat and be a fat and happy toad.

Sunday, August 15, 2010

Taughannock Falls with the Grandparents

It is very special that Oliver can spend time with all four grandparents. This weekend we all drove out to Taughannock Falls State Park. There is a look-out point above, and then a nice wide flat trail below, great for wheels, leading to the base of the falls. We all enjoyed the sights and the amazing weather. Due to a lack of rain, there was only a trickle of water over the falls, but it was spectacular nonetheless.

Taughannock Falls, late summer Stairs at Taughannock park
The Falls, cut by ancient retreating glaciers. Compare the same view from last fall. And here are the steep stairs to walk down to the lookout point.

Maini and Baba at Taughannock Ma and Da at Taughannock
Dadu and Thamma, Papa Dadu and Nainai.

Shami, Dadu, and Oliver Thamma, Shami, and Ollie
Three generations of Chatterjee boys, and Ollie with his dad and Thamma.

Bridge at Taughannock Dibs, Ma, Ollie at Taughannock
Below the falls, Ollie with his mom and grandmother.

After the waterfall, the creek runs over a rocky bed and empties into Cayuga Lake a short distance away. Shami, Ollie, and I wandered down to the shore after the grandparents left for home. We skipped some stones across the water, absorbed some of the peace and quiet, and then drove home ourselves. It was a nice outing.

Meghan and Oliver at Taughannock At the south end of Cayuga lake

Cayuga lake shore

Tuesday, August 10, 2010

Nainai and PapaDadu's Anniversary

Oliver's Ithaca grandparents had their wedding anniversary in early August. To celebrate we invited them over for a sit down Indian meal. Several dishes were whipped up, and Oliver's Thamma spent the day making a special payesh (rice pudding) for dessert. Ollie offered to taste-test it beforehand to make sure it was good - just kidding - but Thamma gave him a taste anyway. It looks like he liked it, doesn't it? Never trust a picture! It took a lot of effort to coax that smile out of him. But he did have some fun playing with it on his tray.

A taste of rice pudding? No way! Oliver playing with rice pudding

Ollie joined us at the table and it was a lovely dinner. And everyone (except Ollie) agreed that the food, and especially the payesh, was delicious!

Anniversary dinner for Ma and Da Anniversary dinner spread
Anniversary dinner table Rice pudding for dessert

Friday, July 30, 2010

More July photos

We had a nice visit from Oliver's uncle Ian, Aunt Wei, and their kids Eamonn and Molly. It was great to see them. Wei spent some one-on-one time getting to know Oliver, which was wonderful. Ollie loved having Aunt Wei read to him!

Ian, Wei, Eamonn, Molly, and Oliver Wei reading to Ollie

While they were in town, Shami engineered a fantastic Indian banquet and we had the whole family over. As usual it was crazy, chaotic, and exhausting, but well worth the effort!

Ollie and Nainai Thamma, Dadu, and Ollie in his walker
Family Dinner Dinner in the backyard
Eamonn likes Indian food Maini and Eliza

We haven't seen very much of Oliver's cousins this summer. But with Eamonn and Molly visiting from Canada they decided to all stop over one day to put on a spur-of-the-moment concert for Oliver. It was quite a scene! Ollie especially liked Kieran playing his Saxophone.

Cousins perform for Ollie

We've tried to get out of the house each weekend with Oliver's Thamma and Dadu. Here are a few photos from some of our July excursions:

At the Ithaca Farmer's Market, and walking through the Cornell herb and flower gardens.

At the Farmers Market Walking in the plantations
Walking in the plantations Dadu enjoying the Cornell gardens

At the once-a-year Ithaca Artists' Market, and at a quilt show at the Johnson Art museum.

At the Artists Market Quilt show at the Johnson Museum

Here is a photo of Ollie with all four of his grandparents on the museum's deck, and one with his dad from an upper floor with Cayuga Lake in the background.

Four grandparents and Ollie The view from the top

And a few more pictures just for the fun of it:
Here's Ollie swinging with his grandmas and cousin Kieran, and getting a math lesson from his grandfather.

Swinging with Thamma and Nainai PapaDadu doing math with Oliver

Finally, here's Ollie getting cuddles from his Thamma.
Thamma and Ollie enjoy a cuddle