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.

6 comments:

Thamma to Ollie said...

We can not possibly live and lead a normal life in a dark dark cave of sorrow and disappointments unless we have HOPE of seeing light some day ! Oliver Akash has already proved that he is amazing in every way...a super fighter. He is sure to show the world one day, that he is unique.So we will have to live with hope and his brave parents will have to continue being his care takers so that he can flourish.

nicolemonique4@gmail.com said...

Dear Meghan, I just found this link hidden as a "Spam" in my email. So glad I did. It is hard to know what to say to you, but I felt I wanted to say something. Your reflections on Ollie's 3rd birthday were raw and beautiful at the same time. Your honesty in assessing the truth is clear and inspiring. I have no word of advise or cheer. I just want to say that I heard you and to be a loving witness to your difficult and wonderful journey. Sending Love,Nickie (From Caitlyn's scrapbooking)

Anonymous said...

'Stumbled' across your blog after searching flicker for Ithaca snow (I was homesick) - imagine my surprise to discover that you'd spent time in Australia (I'm from Tasmania), and now I've fallen in absolute adoration of your little boy. My best wishes to you all, with my utmost respect.

Ellen said...

Meghan, hi. I hope you get this; I would like very much to converse online, please email me.

Gemini said...

Dear Meghan, Piku,

Ani has been wanting to send something from Shifu across for Ollie. I finally got around to putting some videos online of Shifu as a pup.
Hope they brighten up Ollie's day (or yours).
smallisbeautiful.blogspot.com

Take care.

luv,
Sanjeev
---

meruna said...

Hi Meghan / Shami

I stumbled across your blog while researching something, and was led to a page in early 2007 - i instantly loved the pictures (agra, jaipur) and also read your subsequent entries - i especially loved the "40 week pic by pic account" its brilliant ! My heart goes out to you as I read about your boy, he is so intelligent and sweet, it comes across in the pictures even.

Life is indeed strange, the best of people are dealt with the toughest things I guess.. I had a tough childhood, my mother was diagnosed with brain tumor (which progressively deteriorated her motor skills) - she was a truly exceptional person, smart, witty, hyperactive and it was very very tough to watch her like that. There are many parallels with daily struggles,and the fears and emotions behind these, but I can also find the same spirit in both of you, of loving life, loving family, and living each day as it comes, to the fullest. May god bless.

I will bookmark and stay in touch.

In hope, and faith.
Runa Mookerjee

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