Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
Currently, May enjoys bouncing and the dulcet tones of dub step.
Click on May's photo here to link to her best bits, including videos!
Email her or her mama at: firstname.lastname@example.org
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- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 14, 2009 // 36 Comments
- November 25, 2011 // 35 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- November 29, 2013 // 0 Comments
- November 25, 2013 // 5 Comments
- November 7, 2013 // 4 Comments
- October 23, 2013 // 12 Comments
- October 9, 2013 // 11 Comments
- By Mama Lewis, December 7, 2013
- By Kristen, December 6, 2013
- By Katie B., November 26, 2013
- By Ellen Lewis, November 26, 2013
- By Madgew, November 26, 2013
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Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
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Searching for a nursery – Part IV
I feel like George Lucas with his Star Wars saga. Parts 1 – 3 are over, then later, I discover that I never actually finished filming Part 1, so I begin again and it is terrible. Really terrible.
Two days ago, the council phoned me to explain that May’s equipment and one-on-one care for nursery was approved. We hadn’t actually applied for one-on-one care for May, so this came as a surprise for me, but a welcome one.
“Wonderful!” I said, delirious in the idea that someone had done something extra for May that I didn’t even remember applying for.
“But, having approved this, I was wondering what you plan on doing for the rest of May’s care? Our limit on one-to-one care for any child is 15-hours and I see here that May will be attending for nine-hours a day.”
My delirium burst. “What do you mean?”
The woman explained that if they agreed May needed one-on-one care, than she needed it all the time. One-on-one care is expensive and the nursery would be liable if they didn’t provide it and something happened to May in its absence. Someone had to pay for one-on-one care for the rest of May’s time in nursery.
“With your child’s needs,” she said, “she just won’t react to danger in the same way as other children.”
“May is only nine-months old,” I said, “if there is a fire in the nursery, none of the babies are going to run out of the building.”
The woman from the council did not seem entirely convinced this was an appropriate analogy. She agreed to speak to the nursery and discuss the situation. Later, I received a phone message from the council. The nursery claimed they’d never heard of May.
I assumed that this was a mistake. I phoned. No one phoned back. I called again today and the manager spoke to me. “The thing is,” she said, “we only have May’s initial paperwork. We haven’t contacted you yet to say a place is available. We haven’t invited you in to put down a deposit.”
My heart sank.”But, you said that it wouldn’t be a problem. You told me. Don’t you remember us?”
“Yes, I remember you. But, you see, we have a waiting list. At the moment, no one is leaving and even then we need to work through the list.”
I stammered with incredulity. “You told me the waiting list wouldn’t be a problem for us. Why would you tell us that?”
“I am so sorry, but I have to adhere to our system.”
My frustration and anger rose. “Why did you make such a promise to me if you couldn’t keep it? You haven’t just made this awkward for me, you have made it horrendous. What nursery will have a place for May this close to me starting work?”
“I am sorry. We can keep her on our waiting list.”
“But, how will I find a place for her? No nursery wants her,” a sob cracked through my veneer. ”My daughter is so sweet and no one wants to help her.”
What am I meant to think about this? My husband thinks they heard about the one-on-one care – which incidentally the council agrees is unnecessary until May is older – and decided not to take a chance on her. It is hard to know.
Regardless of their reasoning though, making a promise to the parent of a disabled child and then reneging on it with weeks to spare, is reprehensible.
Luckily, the only other nursery we found that would take May, the very first nursery we went to in fact, will most likely have her. I meet with them in a week and a half – following our visit to Wales over the half-term holiday – to see if May passes their risk assessment. The manager was confident that she would.
My relief was considerable. And, hopefully, unlike the Star Wars prequels, this nursery search will be a big success. And over.