Archive for August, 2010

Baby Jet Lag. Not fun.

It’s a funny thing, see – babies don’t understand time zones. They just don’t get it.

And, May has one super power above all others. The power to sleep in any situation, in any position – even when held completely upright or upside down. She developed this power specifically for times such as these, when her parents dearly want to sleep at 4 AM, but she wants to bounce. Bouncing at 4 AM requires the super power of sleep to replenish energy reserves.

Cute photos of May a year ago to remind her parents why she is worth it:

Yes. It is the bouncing that sustains us in this time of Baby Jet Lag, surely the worst of all jet lags.

Interestingly, in her most recent medical report, the doctor noted all the following:

“She likes rhyme games… bouncing to indicate more.”
“She most enjoys supported standing and being bounced.”
“She enjoys bouncing on her mother’s lap.”
“She was also observed bouncing…”

Hmmm. Maybe I’ll try this bouncing thing with May and see if she likes it.


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Four days left in the Land of Free and Home of the Brave. Sob.

Since May’s birth, I’ve searched high and low for information on helping raise a brain-damaged baby, and the amount, or lack of, literature has been shocking. The most formative months of her life, and what help do I get from medical and scientific minds? Zip.

I’ve certainly had help from the professionals working with May, but when it came to source and developing my own understanding of May’s condition. Zip. Nada.

“There is so little we know of the brain,” I am constantly told.

“Not good enough!” I say (to no one in particular).

But, here is something I have found, for those interested parties: family helps.

I don’t mean, family members will help change diapers (Hello? Dad? Change a diaper?) I mean being around family helps me, and especially helps May. Her two cousins (2 and 6 years old) adore her and she obviously loves them. Every time they shriek or laugh, she does the same. And, they help her play in a way that an oldie such as myself has no concept of.

I can’t get over how much progress May has made in the past few weeks. She is reaching forward all the time now to press buttons on toys. Her balance is better. She seems to fix on things better. Everything is better.

And for me, I have had a few weeks of just thinking about May as being my daughter and just another member of the family. That is a huge thing. It is very hard to not think about May’s condition all the time. To think of May as just an adorable little girl playing with her cousins is a real gift.

Here is a short video from the start of the vacation of my sister (Aunt Carrie) with May. This was one of the first times we saw May reaching up to touch someone else’s face besides mine or her father. I couldn’t capture it exactly – babies never do what you want when the video is recording! You can see May doesn’t get to Carrie’s face, but I can assure you she does now all the time.

This is what family can do that medical textbooks can not.

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The following is a Brain-Damaged Baby: Genius Moment.

Playing with toys is not something May has ever shown interested in. A therapist once said to me, “Some children are toy people and some are social people. May is social.” That is the kind of reassurance that lasts a few weeks, but then a year later, May’s mama still wondered, with a mild sense of doom, “Why won’t May play with toys?”

Could it be:

  1. She has difficulty using her hands and arms to reach them?
  2. She is severely visually impaired so she can’t see them?
  3. She isn’t interested in them because she doesn’t have the cognitive ability to understand that she can entertain herself with objects?
  4. A combo of the above?

Up until this week, May would reach up to swat toys hanging above her. Or, if she sat on our lap, and we helped her raise her arm up, she could reach forward, very very very slowly, to tap a toy in front of her. But, not all toys. In fact, only one toy, or sometimes a Dr Suess book. And, we were never sure if she intended to do it, or if it was involuntary.

Last week, a friend gave me a Fisher Price Ocean Wonders crib toy that her son, half the age of May doesn’t use anymore. She’s one of my oldest friends and had the decency to say something like, “He keeps pulling on it and I’m afraid it will fall on his head so I don’t keep it in his crib anymore.” And, I had the decency to accept it, even though I know that May shows zero interest in toys.

But, what the hell, I’ll try anything. A few days back I was sure, when I lifted her arm up, she reached forward herself to turn it on and off. A glorious moment!

But, there is always uncertainty. Did she really do it? The button on the toy is ultra-sensitive so even the slightest brush of May’s hand can set it off and on. So, did she understand she was turning it off and on?

Doubters pay attention. Tonight, as I sat at this very computer, my daughter drifting off to the lullaby of the toy behind me, suddenly – the toy turned off! I stopped typing and raced to the crib. She had a sneaky smile on her face. Then, on her own, her arm shot out to turn the toy back on. Rapturous joy on my daughter’s face! Rapturous joy on my face!

I am the mama to a beautiful brain-damaged genius.

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The Next Blogs

New posts! New blogs!

Some of my blog entries appear as well on the web site The Next Family. It’s an online community that publishes writing from all kinds of families; modern families like single parent households, gay parents, multi-racial – all kinds – and, as of a week ago, (drum roll!) families like ours.

Also, my husband now has two blogs. (I’m ignoring his attempts to one-up me with two blogs compared to my one. Oh, wait! I do have two blogs – my other one I haven’t updated for a year.) He still writes about Sci-Fi on Cadair Griffin, but now he also writes about World War One poetry at Move Him Into The Sun. He is in-charge of A-level Literature (AP English for Americans) at Southfields Community College. The blog is for students and WWI poetry buffs alike.

Links to all the above will remain on my sidebar for all interested readers!

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America has had all kinds of positive influences over May.

Today, she rolled on to her front five times. May can roll side to side, but rarely all the way over to her front. Despite getting stuck in this position, this is a sign that she is stronger. She is also reaching up to touch my mouth all the time when I make sounds she likes. But, yesterday, she reached up and touched my sister’s face. We’ve only seen her do this to my husband and I. Further evidence that she is reaching properly now, is a new toy I demonstrated for her. I reached her hand out to brush a large and very sensitive button that turns it on and off. After, she reached forward herself to start and stop it. This was an incredible moment.

Okay, so her aim isn’t that great. And, she needs encouraging and steady support. But, she is getting it! And, these are actions we worried she would never be capable of. We are so excited!

Another first this week: May’s first hair cut. Cut by that stylist to the stars: Grandma Bar!

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