Archive for the ‘Life with a CP Baby’ Category

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Monday – Music Therapy and Speech and Language Therapy

Tuesday – nada

Wednesday – Physio

Thursday – nada

Friday – Physio and Hydrotherapy

Maybe that doesn’t sound like a lot to you. Maybe you are thinking, “Isn’t Stacie on maternity leave? She can fit that all in.” Or, “An hour or two a day, every other day isn’t much for May.”

So also, please consider the monthly visits by May’s community therapists (OT, Physio, SALT)? And Small Steps School?

Not to mention each of these people give May and I homework and that homework takes hours in itself.

At what point is May doing too much? Let me rephrase that. May is doing too much. I’ve already removed her from Small Steps – which was a hard decision months in the making. Everyone at Small Steps was a huge support to us. Why did I do it? Several reasons:

1. May couldn’t do three therapies on Fridays. Even I know that is too much for a toddler.

2. Small Steps is the furthest away and the longest session (2 1/2 hours) so it would take that much more out of May than the other therapies.

3. I can’t handle it.

That’s the truth. I can’t handle day-in-day-out of meetings with specialists that I know can help May – or, worse meetings where I know they won’t help May. Meeting after meeting where well-meaning people sit down with me and we discuss how disabled my daughter is. How she needs standing frames and future wheelchairs and hoists to get her out of bed. How she needs splinting and lycra suiting. How she needs to try chewing with solids, sipping from cups, assisted standing. How we must do for her what she can not like brush her teeth, dress her, hold her chin so she can chew better. How when we dress or bath her we must support her in ways so that she can support herself and encourage her to reach.

I struggle to see, not only how I can physically do all the above x 10 in one 24-hour period, but also bear the weight of the constant voice in my head, “May can’t. May can’t. May can’t. You must.”

I have a splitting headache.

Here’s my final thought. Every time one of them comes to my house and sees my May-bell in her Bumbo seat, they say, “As May’s physio/OT/bum off the street, I have to tell you that May really shouldn’t sit in that chair/She’s too big for it/She’s going to fall over/Shouldn’t push back like that it’s a bad habit.”

Here is a question for them: Do you see her smile?

How can I take away her Bumbo? No one has suggested another means of letting her experience independence. This is the only time she spends on her own, entertaining herself all day.

Every meeting opens up new questions. What I want is answers.

You can read more from Stacie over at BabyCenter.

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In this, the next segment of our continuing series ‘Yes May, but is it art?’, we consider a new exhibition that passed before the newly bespectacled eyes of little May this week.

It was not May’s first time at Salisbury Cathedral. She and I enjoyed the cathedral’s tea and scones while I was pregnant and unable to complete the Cathedral tour on a visit only four months ago. I was gutted. (A lie. That scone was love on a plate.)

This weekend, however, May was determined to see more at Salisbury Cathedral and was treated to the Conflux exhibition of Sean Henry sculptures. The exhibition’s life-like sculptures of people juxtaposed ordinary people with the saints adorning the cathedral.

I reached this woman's elbow.

May is a big fan of exhibits that challenge the viewers to consider the value of things. In this exhibition the question was: Should average people be considered equals to the saints they are placed amongst?

The sculptures had a surreal quality that May found easy to ignore, even if her mother found it slightly disconcerting. May can easily brush aside anything she feels is not significant enough to draw her attention. From afar the sculptures looked real, but up close it was a frozen reality and just that bit too large – large enough to make her Mama feel like she was in a scene from Alice in Wonderland. (My husband said I should be used to this since I am already so short, it is a feature of my every day.)

But, who cares what I think?

May, is it art?

On approaching the magnificent cathedral through the square:

Snoring. Bit of wheezing.

After a bottle of milk in the catherdral cafe:

Perking up. Ready to critique some art!

In baby changing room toilets listening to the hand dryer:

It’s art! It’s art! (May loves hand dryers.)

Outside by the sculpture of a woman walking:

Interesting. Possibly art. May listens carefully to see if she makes any funny noises.

Standing inside the open sculpture of the same man lying in bed and standing by a table:

It might be art, but it certainly isn’t interesting. You know what’s interesting, Mama? Dinner. Dinner is interesting.

At that point we retired to the pub where May and her daddy were both reacquainted with their bottles. I waited until then to ask the most pressing of questions: May, does art have a place in religion? Should places like Salisbury Cathedral celebrate modern art?

Slurp. Slurp. Big smile. Straight into bouncing!

Salisbury Cathedral, be proud. May approves.

Side story: My friends, who live in Salisbury and hosted us for the weekend – thank you Anthony and Donna! – saw a dog contemplating this exhibition the previous weekend. The dog could not figure out why the man in the bed looked so much like a man, but neither smelled nor moved like one. So if anyone fancies creeping out their dog, this exhibition is for you.

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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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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Last night, in anticipation of the arrival of May’s glasses today, I asked to my husband, “Do you think the glasses will make a difference?”

“No,” he said, bluntly.

I made a kind of hmmm sound. The kind of sound wives make to husbands when a “no” isn’t quite a sufficiently long enough response.

He looked up at me, since I was still looking at him, thought better of it, and continued. “Noooo, but I hope.”

Like him, I can’t expect much more than that.

I picked up the glasses today, less than two weeks after doctors discovered she has an astigmatism. Just as you are, I saw her in them for the first time today. I hope hope hope this makes a difference. So, what do I think of them so far?

Hmmm. Very cute.

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Want May to win Best Special Needs Blog at Parents Magazine? The easiest way to vote is to register with your Facebook, Twitter or email account when prompted. May thanks you for your vote: Bounce!Bounce!Bounce!

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A few months ago, I entered a giveaway to receive a free iPad for May. It was the second giveaway the blog, called Marissa’s Bunny, ran. In the first, Mike, the writer of the blog, organized a raffle where for every $1,000 raised, a special needs family would receive a iPad. Tickets cost $2.

In the first giveaway, 20 families were promised laptops. It doesn’t appear than any received them. Perhaps some did but, if so, the vitriol unleashed over the internet would imply few did.

Why then open a second giveaway? There is much about this story that perplexes me. Since my initial application, months ago, I have not heard anything back other than his own postings on the blog. (I did email him for this post, to hear his take on the status of the contest, but he did not respond.)

Once it was clear that receipt of the iPads was no longer a given, he wrote an elaborate story on the blog involving emailed threats, the police and his family’s safety. Without revealing any specifics, he conveyed vague threats of violence to towards himself and his children as the reason he was forced to stop. Given the tone of the writing, I hope it was all in his imagination.

This lack of details about the closure of the giveaway, combined with the disappointment of parents already bludgeoned daily by disappointments, sent the special needs blogosphere into a tizzy.

People have a tendency to trust and admire the parents of disabled children. There is no justification for it. I’ve never understood this. Not many of you readers know me in real life. I could be complete loser in real life, or worse, a man. (That is a joke!) Or even, an American! (Actually, that part is true.)

As the father of a daughter with special needs, readers took Mike on faith and donated A LOT of money to help raise money for his daughter’s surgery. I’ve read of figures topping $25,000, though how much exactly, I am unsure of.

On the other hand, it is not unheard of for companies and charities to offer special needs children free products. Only a couple of weeks ago, my speech and language therapist told me about a British charity that is giving away iPads to children. But, I’ve never heard of something like this.

What a curiosity! Have you heard of the Marissa’s Bunny giveaway/raffle?

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

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