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There is nothing I like more than hugging my May. She is the softest, sweetest smelling child in all the world. She never tires of cuddles in the way that babies, and certainly toddlers, are meant to. She will snuggle with me for all of eternity if I want, and sometimes I do.

So, why, why, why would I leave her behind and travel such a distance that an entire ocean separates us?

Necessity.

Though May is two years old, because of her brain damage, she is completely dependent on me. And, because she is two, she is heavy. To bring her on a transatlantic flight to visit my family in the States, by myself, along with her newborn brother, I saw as a near impossibility. Not to mention, how I would take care of both of them in tandem for the 10 days of my stay.

Here is what I envisaged for the plane ride alone: My arm thrust across the seat next to me to support my heavy child, who can’t sit, who is crying because she has a wet diaper. Meanwhile, in my lap, her brother is curled up against my other arm, also crying because he is hungry. How? Who? By what means?

Now, multiply that by 10 days.

Maybe, I should have found a way. Or, maybe sometimes, a mama’s got to do what a mama’s got to do. So, I said “goodbye” to my darling cuddle bug. It’s just Ieuan and I here in Detroit.

Oh, but my May-May. My sweet May-May. I miss you.

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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Mama Lewis and the Amazing Adventures of the Half-Brained Baby has a new home now. Come visit us at mamalewis.com.

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When I wrote my 100,000 hits post, it was only February of this year. It took almost a year and a half to get there, and now a third of the time to get here.

But, that’s not what I really what I find amazing. 200,000 hits is small potatoes compared to everything else that happened in that short amount of time.

May discovered her mouth. She enjoys making clicking and humming sounds. She spits like a champ. She sings along with us. Her laugh is infectious. I defy anyone to not giggle along with her. What a joy she is!

May’s seizures disappeared. We go weeks without seeing one now. Let me repeat that for those of you new to my blog. We go weeks after almost two years of frequent seizures, at their height over 100/day. To rid herself of these, May had to endure medicine trials. That’s how she learned to spit like a champ.

May learned to sleep through the night. We should win a medal for that.

May moved on to chunky food and put on the pounds! Finally! (And, from this, I learned that my instincts are right. Two fingers to so-called experts who doubt and patronize thoughtful, reflective and informed parents.)

May became more independent. She mastered the Bumbo seat. Which means, she can sit – be it aided. That is an amazing step forward. Not to mention, she LOVES her Bumbo. She also loves her bouncer. In both of these, she will happily play on her own for 20 – 30 minutes at a time.

And, just in time – because she needs to be more independent after the major event of the year. A healthy, baby brother for May!

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Yesterday, I wrote a post ‘What NOT to say to the parents of special care babies‘ on BabyCenter.

This got me thinking… what is the right thing to say?

A week before we took May home from the hospital, my husband and I attended a wedding. At the wedding, pretty much everyone, even the people we didn’t know well, knew that we had a baby in the hospital.

One friend of a friend approached me. He was a parent himself.
He took my hand. “Congratulations and commiserations,” he said to me.

Other people at the wedding were offended on my behalf, but I thought it was honest and touched genuinely on how I felt. I was so grateful that a person didn’t pretend everything was okay. He managed to do so, while at the same time recognizing the love we had for our daughter.

So, instead of being offended, I thanked him and we spoke for a while. Our mutual adoration for our children (and the newly married couple) was our only link, but his decency lasted with me.

I don’t know that everyone would agree that it was the right thing to say, but it worked for me.

What do you think people should say to the parents of a special care baby?

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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Perhaps you think this blog is to inform you, the reader, of special needs issues, or May’s issues in particular.

OR… maybe my blog should be endless slideshows of my adorable children.

You decide.

In the meantime, enjoy! I call this installment: A face only a mother could love?

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Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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In my last post, I discussed how May doesn’t understand the concept of a sibling, nor does she recognize that someone new has taken up residence in her home. Still true. (It’s okay. Don’t feel bad. We don’t.)

She does, however, react to Ieuan when he is physically placed next to her, as demonstrated in the video below.

The video is a bit longer than I normally post. This is down to my lack of any editing software. I would suggest you start the video about 2 1/2 minute in to get a full flavor for May’s reaction, if you don’t want to watch the whole thing.

It is not my intention to bore you to death with long videos of my children.

That said, I can’t think of a better way to die…

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Since Ieuan’s birth, there has been one question we’ve been asked more than any other, even more than “Are you getting any sleep?” (Answer: No)

The question is: “How has May reacted to her new brother?” Sometimes people ask who really understand May’s cognitive functions. Always, it is asked with genuine interest. But, it is not a comfortable question for me to answer.

I’ve tried several answers:

“She loves hearing him cry. She loves a crying baby! Very funny!”

“She is being spoiled rotten so she is fine with it!”

“She’s enjoying being at home with her mama, daddy and new brother.”

What I really want to say is, “May has no idea she has a new brother.” Because, that is the truth. May doesn’t understand the concept of a new sibling joining the family. She doesn’t recognize that there is anyone new in the house. She is totally unconcerned. She is not excited. She is not upset.

I’ll be honest. I’m sick of answering this question. Every time I have to answer it, I lie. Okay, so they are white lies. (May really does enjoy laughing at a crying babies. The more screaming and pain the more rapturous her giggle.)

Only yesterday, I was still attempting to get May to recognize me. I walked into the kitchen quietly and stood directly in front of her with a big smile on my face. I willed her to identify my face while I remained silent. There was no response, and then, all of a sudden, she burst into a heap  of giggles. “She recognized me!” I cried out to my husband. He was just as excited, because even recognizing the faces of us, her parents, is difficult for May.

So, to be clear, though we may all want May to have a big reaction to her brother, she hasn’t.

But, that doesn’t mean she won’t in the future. If May is going to recognize her brother’s existence it will just take a bit of work on our end. Like everything else, May needs direct access and stimulation over time to build associations. She can’t just occupy the same room as him to know he is there; she has to feel his face with her hands, listen to his cries, be brought up close to him so she can see his eyes.

And, this is exactly what I’ve started to do with her. When I bring her that close, I think she shows a bit more interest. Okay, so she doesn’t grasp that she has a brother yet. But, he does amuse her. Especially, when he cries.

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