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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 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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A bit of grrrrrr today. Grrrrrr.

Our car was sideswiped while parked about a week ago.

Today, the repair company is picking up our car and dropping off a courtesy car as arranged by our insurance company. I asked them if it would be comparable to the car we own. “Do you own a VW Polo?” he said, “Because that’s what it is.”

No, I don’t. When you have a child as severely disabled as May, a two-door hatchback doesn’t cut it. We could use the entire back end of the car, passenger seats and all to just fit the double stroller we have to use.

I called the insurance company and asked for a bigger car. I even offered to pay the difference. “I’m sorry,” the customer services lady said to me, “but we can only arrange a car as in keeping with the policy.”

So, I explained my daughter’s disabilities. “I’m sorry,” she said, “but it would be unfair on our other policy holders.”

“But, it isn’t fair on us,” I insisted. “Our situation is not equal. We are not receiving a mode of transportation that is equal to getting us places like the rest of your customers.”

This went back and forth for a while. I asked to speak to a manager – who she said was unavailable. “I’ll hold.”

“He won’t be able to speak with you. He will call you back within 24 hours.”

“That’s not good enough for me,” I said. “We need a car today. I’ll hold.”

“You will be holding all day. He is busy.”

“Let me put this in perspective. My daughter can’t walk or talk. Your boss is busy.”

There was a low moan and she asked me to wait. Five minutes later she returned, “My manager is too busy to speak to you, but he has approved a bigger car.”

“Thank you,” I said sweetly.

I don’t enjoy these conversations. I don’t want to speak to managers or throw my daughter’s disabilities in someone’s face. But the fact is, our lives are harder than most people’s.

I have these conversations with airlines that refuse to chill my daughter’s medication because it will take up room in their refrigerator. Or, nurseries that herald their special needs policies, but won’t prioritize May because it would be “unfair on other parents.” Or, people who park in handicap spaces and when I ask why say, “My wife is in the shop and she is pregnant.”

Pregnancy isn’t a disability.

I struggle to dress May in the morning. Fine. I accept that. It takes longer. We sing some songs as we go along. But, I should not struggle to access the basics that any other family, or policyholder, would be able to use.

Finally, enough grrrrrr. Here are a couple cute photos of my son. He turned three months old yesterday and he is no trouble at all. My insurance company could learn a lot from him.


Don’t forget to VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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You know why I love social services so much? Because working with them is an adventure; I never know what to expect next. What fun! Plus, I get to really focus on what May can’t do. That’s something I love doing.

Today, a social worker called to confirm an appointment. Her call was the first I heard of it. Today. An appointment at 3.00 today.

I couldn’t figure out what this appointment could be for. Then, I had a sudden realization, “Wait! Is this about respite care for May?”

Turns out it was. So, I said I was free.

The information the social worker collects goes to a panel later this week. There some people, as always strangers who have never met May, will decide exactly how many hours of help we need assistance with, based on a report compiled after our 40 minute meeting.

It doesn’t instill you with much confidence does it?

Me neither. And, given our previous experience with Social Services, I expected the worst. I was actually nervous. While Ieuan took a nap, I went outside and paced in the sunshine creating a list in my mind of reasons we need respite care. Newborn baby. May’s increasing heaviness. Not enough time to do basic stretches. Need someone to assist for the safety of both children while I’m concentrating on one. That I want just one cup of tea without being interrupted. Just one.

Is that too much to ask?

Here is where this post turns bizarre. I LIKED the social worker. I don’t think she’d be for everyone with her blunt mannerisms, dark sense of humor and business-like professionalism, but that is exactly what I want in a social worker. I want someone who will say, “On the form it asks about communication. I’m just going to write, ‘none’ and fill in the rest on your behalf later using the medical reports.”

Hello? What? Honest, to the point and helpful all at once? A social worker entered my home and had already read May’s case history. She did not ask me a single thing about the birth. She had handwritten notes on May’s reports. I didn’t need to explain anything except where she didn’t know what to say without asking me.

I thanked her. Repeatedly.

She acted like it was all part of the job. She doesn’t realize how rare it is that people do their job.

From her chair, one which reclined comfortably and she said she may never leave, the social worker snorted a chuckle. “It says here, ‘Did you meet with the applicant alone?’ as if May and I would arrange to meet!”

“Next time, I’ll leave you two be,” I said, “and you can meet for coffee.”

She chuckled again. This woman, with her notes and strong demeanor is what I have been fearing for so long. Good news for once from the department that trains the so-called experts.

We should find out in the next week what kind of respite comes from the report.

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

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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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