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Posts Tagged ‘motherhood’

I have a wish list for May. It’s for both of us really because anything that interests her, makes her giggle or helps her be more independent is a gift for me too.

My list:

1. A toddler sized Bumbo seat so that May can continue to enjoy sitting as only she knows how.

2. A teether that stays in May’s mouth while she is sleeping.

3. May to sleep through the night (Yep. That’s right. We are back there again.)

4. Ieuan to sleep through the night. (It’s like my own small Hell here at the moment. Be it a very cute version of Hell.)

5. A holiday. Anywhere.

So, in part, an unlikely-to-be-achieved list. We can all dream. I even wrote to Bumbo at one point and asked them for a toddler sized seat, but alas they do not make them.

One free thing I did receive this week was a pack of flashcards from a friend who runs the company Who Loves Me? I sent her photos and she sent me back flashcards with members of May’s family on them.  On the back, are short statements I wrote and read out to May so that the whole thing became a little story of my own creation. May enjoyed the colors and the little stories. My favorite card is of Ieuan and Grandpa together at The Original Pancake House for the first time. Lots of giggles when that came up. May LOVES the Pancake House thus proving she is a real Lewis. (Incidentally, Ieuan’s favorite card was also this one! Lots of smiles when I turned it over. He loves his Grandpa.)

So tell me… what’s on your wish list?

*Disclaimer: Though I received the cards for free, my opinion about them is my own. And, unlike the cards, the fun we had with them was not manufactured!

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

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I often think about the other parents. The ones who are in intensive care wards, or in the “bad news room” at the hospital awaiting results. The ones who are sitting next to incubators, who pray, who hope, who despair. We were them once.

I had so many questions then. Not medical questions – questions for my future self. And, I expected every answer would filled with more misery than the next.

Fast forward 2 1/2 years. How would I answer the questions of the woman I was?

Question from me 2009: Does life suck?

Answer from me 2011: No.

Question: But, surely it does and you are just covering it up to make me feel better.

Me: No, I’m not. Everything takes longer. I worry more about the future. I will never feel “grateful” for May’s brain damage. But, that doesn’t mean I hate my life. I love my life. I love my daughter.

Question: I know you are lying to me. What about her seizures? She has over 100 a day.

Me: They stopped. That was a major challenge, but we tried out various medications and got them down to almost non-existent.

Challenging, but not without its pleasures.

Question: Well, that sounds good, but she still can’t sit. Or, feed herself. Or, speak.

Me: Yes. I hate all that. But, I don’t let it eat away at me. I can’t. I focus on helping May become as independent as she can. I try to focus on what she can do rather than what she can’t.

Question: Oh, come on. Don’t you want to run-away or scream or anything but not have this be your life?

Me: My life has changed. It is definitely different than I imagined. But, the worst moments all happened when she was still at the hospital. After we left that behind, the only way was up. It never got that bad again. That’s the truth. When we were told of May’s injuries it was a blinding, desolation of my emotions I have never felt since.

Question: Are you sure you don’t wish every day that this never happened?

Me: I do. I would literally give of my body if it would cure her – anything to erase May’s injury and make her whole. It’s hard to watch her struggle to do what comes naturally to the rest of us. But, mainly I worry about her future when we aren’t around. But, here’s something to think about: almost everything I worry about, May doesn’t. She doesn’t even understand that there is anything wrong with her.

Question: But, you must look at her and know she will amount to nothing.

Me: I can’t wait for you to see everything May can do. Watch her Olympic level bouncing to see even a sliver of the joy she has brought into our lives. Society rates success on money and degrees and titles. And, okay, she won’t achieve those. But, how many of us can say that we made a member of our family smile every day?  Is that nothing?

Until you live with May every day, you will not understand how proud of her we are – how her most minor achievements astound us. It is simply not possible to love her more than we do.

There is much pleasure, love and silly songs in your future.

I really wish I had known that then.

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

VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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You’ll have to look closely here. As quickly as I could in such an awkward position, I tried to capture something I’d never seen before. The shaky footage is due to me grabbing my computer, the only thing with a camera to hand. Also, the upload plays at a slightly faster speed than real life giving it a silent film like quality. Not to mention I started weeping.

All this, and yet it is such a miraculous moment that I’m uploading it anyway.

Here May reaches out and for the first time I have ever seen, touches something other than our faces. And, it’s her brother.

In my wildest dreams, I never expected May to acknowledge Ieuan so early on. I didn’t get my hopes up on her acknowledging him at all – not until he was old enough to make his presence known. But here, May gently reaches out with an open hand, caresses his face and sticks her index finger in his mouth for him to suck on. She did it here, on the video, but also numerous times throughout hour they lay together under the playmat.

Don’t lose hope parents of special needs kids. Amazing things are always just around the corner. Of course, we endure the desperate eternities between milestones, and even our milestones are not conventional, but sometimes we are rewarded with the most beautiful moments of our lives.

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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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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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Today, we brought May’s little brother home from the hospital. I still can’t believe they let us go! I am in total awe at how smoothly everything has gone – so different from our first experience.

I will tell more later. I’m too tired now. I’m only awake because I have to feed the little nipper soon!

Also, we have a name but I haven’t yet spoken to the whole family, so I will reserve the right to not say for a little while longer.

To sum up: happy happy happy.

Photos of May’s first meeting with Peanut, yesterday at the hospital:

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Happy 4th of July everyone! And, of course, Happy 5th of July for us – the big due date!

Tomorrow, May becomes a big sister! If all goes to plan and the baby is healthy, there is no telling how beneficial the little one will be for May. For us all! So, there is a lot to celebrate around here.

If you want to know anything about the baby’s arrival tomorrow, please check on BabyCenter. I asked my husband to upload a photo and info on to their site. I can’t really ask him to do the same here, when all you have to do is click over!

I’m not sure exactly how long it will be before that photo goes up, so don’t panic if you don’t hear anything from us by tomorrow. Both of us will be pretty exhausted!

In the meantime, get a load of Big Sister May in all her American finery. The gorgeous woman supporting her in three of the photos is her Grandma Barbie, here to meet Peanut, babysit May and nurse Mama Lewis back to health post-op.

Wish us luck!

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