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Archive for the ‘Success!’ Category

I’m an hour early for the celebrations this year. May officially turns 2 1/2 tomorrow, but we are celebrating now with her uncle and aunt who are in from Perth, Australia. What better gift for May’s birthday than two more people around to spoil her!

Considering how far May has come, I’m especially excited as to what the next six months will hold since May started with doing more physio and other therapies, and also – fingers crossed – will be starting at a special school in January.

In keeping with previous birthday posts, let’s all celebrate May’s amazing accomplishments!

(Bouncing encouraged, but optional.)

May, when you were born, here is what the doctors definitely knew you would be able to do:

- pee

- breathe

At two and one half years old you can:

- sleep in your big girl bed (but not through the night grrrr)

- investigate your new sibling’s mouth

- enjoy being on your tummy so much you giggle rather than cry

- even prop yourself up on your arms and have a look around 

- lift your head up and hold it up in awkward positions

relax and remain in a side lying position without support

- show the potential to control your hands and arms more

- play independently in your Bumbo or bouncer for 30+ minutes

- express your disappointment with Welsh rugby

Happy Birthday May! We love you!

____________________

You can read more from Stacie on BabyCenter or Twitter!

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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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If you think May is a superhero – if her Superior Power of Cuteness has directed you to read posts when really you should be working, there is no need to thank us. Who needs a job anyway? Mama and May approve of your devotion!

Here are a few ways you can spread the LOOOOVE:

1. VOTE for us! Parents Magazine is running a Best Blog Awards contest and we are nominated for Best Special Needs Blog.

2. Can you help out May’s special school Small Steps School for Parents? The company Give-It-Away has donated in excess of £150,000 to Small Steps over the years by renovating and selling on houses in London. Do you work for a building firm? Or, do a bit of plumbing?  If you think you can help, even to give them some publicity, not only Small Steps, but all the other small, underrepresented charities that they help will be very grateful!

May thanks you! (bounce, bounce, bounce!)

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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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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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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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FREEDOM!

May is learning to be more independent. How is she doing this? Because I am forcing her to.

Ah, yes. That old favorite of parents everywhere. The final countdown has begun to the arrival of Baby Two AKA Peanut. One month left. When Peanut arrives, little May will have to entertain herself more.

Is she interested in achieving this new found freedom? Not really. But, then, she wasn’t all that interested in sleeping between the hours of 2 and 4 a.m. and we forced her to do that too.

Independence for May, even on a small scale, is a big issue for us. May needs a lot of stimulation and assistance. For that reason, we will still be sending her to nursery (even when I’m on maternity leave, but for May’s sake, it makes sense). But, what of the days when May is home and the baby needs our attention? Or, I’m too exhausted to open my eyes let alone bouncybouncybouncy?

For all these reasons, I’ve been giving May more time on her own. I’ve bought new toys for her to play with. I sit her in her Bumbo or her special chair more, rather than in my arms. I leave her alone in her crib with her mobile playing or one of the other sing-song distractions hanging off it.

Miraculously, it is working! Like while I was typing the above, May was playing in her crib and I when I went in to check on her, I found this:

She’s asleep, by the way, not unconscious (worried grandmothers take a breath!). She goes to bed – naps or at night – awake, without endless cuddles as was the case. Another move towards independence!

It’s the final countdown to Baby Two’s arrival! Follow the last month of Mama Lewis’ pregnancy on BabyCenter, or via Twitter!

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